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Qualitative Review on Domains of Quality of Life Important for Patients, Social Care Users, and Informal Carers to Inform the Development of the EQ-HWB

Open AccessPublished:January 13, 2022DOI:https://doi.org/10.1016/j.jval.2021.11.1371

      Highlights

      • Generic measures for use in economic evaluation are focused on specific aspects such as health or social care limiting their use across health and social care.
      • This article explored the views of the beneficiaries of interventions to inform a new broader generic measure of health and well-being. Seven broad themes relevant to the quality of life of patients, social care users, and informal carers were identified.
      • Themes included health and broader outcomes such as self-identity and autonomy. The findings were useful for informing the development of EQ-Health and Wellbeing.

      Abstract

      Objectives

      To identify the themes to inform the content of a new generic measure, the EQ-HWB (EQ Health and Wellbeing), that can be used in economic evaluation across health, social care, and public health, based on the views of users and beneficiaries of these services including informal carers.

      Methods

      A qualitative review was undertaken. Systematic and citation searches were undertaken focusing on qualitative evidence of the impact on quality of life from reviews for selected health conditions, informal carers, social care users, and primary qualitative work used in the development of selected measures. A subset of studies was included in the review. Framework analysis and synthesis were undertaken based on a conceptual model.

      Results

      A total of 42 reviews and 24 primary studies were selected for inclusion in the review. Extraction and synthesis resulted in 7 high-level themes (with subthemes): (1) feelings and emotions (sadness, anxiety, hope, frustration, safety, guilt/shame); (2) cognition (concentration, memory, confusion, thinking clearly); (3) self-identity (dignity/respect, self-esteem); (4) “coping, autonomy, and control” relationships; (5) social connections (loneliness, social engagement, stigma, support, friendship, belonging, burden); (6) physical sensations (pain, discomfort, sleep, fatigue); and (7) activity (self-care, meaningful activities, mobility, communication, hearing, vision). Apart from physical sensations, most of the other themes and subthemes were relevant across both health and social care, including for informal carers.

      Conclusions

      The findings from this broad review identified themes that go beyond health and that are relevant to patients, informal carers, and social care users. The themes and subthemes informed the domains for the EQ-HWB.

      Keywords

      Background

      Utility values to inform the “Q” in quality-adjusted life-years (QALYs) can be generated using preference-based measures. Nevertheless, the coverage in preference-based measures may be too narrow for some areas of healthcare
      • Finch A.P.
      • Brazier J.E.
      • Mukuria C.
      What is the evidence for the performance of generic preference-based measures? A systematic overview of reviews.
      and in contexts in which other aspects of quality of life (QoL) are important, such as supporting independence through social care.
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      The Extending the QALY project aimed to address this problem by developing a broader multidimensional measure of benefit within an extrawelfarist theoretical tradition.
      • Peasgood T.
      • Mukuria C.
      • Carlton J.
      • et al.
      What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality-adjusted life years? Application to the development of the EQ-HWB?.
      This article presents stage 1 of the project (see Brazier et al

      Brazier JE, Peasgood T, Mukuria C, et al. Development of a new generic measure of health and wellbeing for estimating Quality Adjusted Life Years: the EQ Health wellbeing (EQ-HWB). Value Health. In press.

      for further details), which aimed to identify the aspects of QoL that were considered for potential inclusion in the EQ-HWB.

      Methods

      The study research question was “Based on the voice of adult (aged 18 years and over) patients, social care users, and informal carers, what is the impact on QoL of health conditions and interventions (health, social care, and public health interventions)?” The aim was to produce a qualitative review to inform the content of the new measure and provide rich data from a broad range of different groups of individuals.
      • Noyes J.
      • Booth A.
      • Cargo M.
      • et al.
      Cochrane Qualitative and Implementation Methods Group guidance series—paper 1: introduction.
      Due to resource constraints, this review adopted a pragmatic, targeted approach focusing on a sample of qualitative reviews with supplementary information from primary studies on the development or validation of selected measures.

      Identification of Studies

      Search strategy

      QoL and related terms were used in the search. The Wilson and Cleary’s
      • Wilson I.B.
      • Cleary P.D.
      Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes.
      model, which links biological impairments to sensations/symptoms and QoL, was extended (eg, daily circumstances were added to include carer impacts) to form the conceptual model
      • Peasgood T.
      • Mukuria C.
      • Carlton J.
      • et al.
      What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality-adjusted life years? Application to the development of the EQ-HWB?.
      ,

      Brazier JE, Peasgood T, Mukuria C, et al. Development of a new generic measure of health and wellbeing for estimating Quality Adjusted Life Years: the EQ Health wellbeing (EQ-HWB). Value Health. In press.

      (Fig. 1).

      Qualitative reviews search strategy

      A sample of conditions was selected to represent the spectrum of the impact of health conditions (different types of symptoms, functioning limitation, and impact; acute vs chronic, etc). Conditions were selected based on the burden of disease (years lived with a disability) in the United Kingdom using the World Health Organization Burden of Illness data from 2015.
      Global Burden of Illness data (United Kingdom). Institute for Health Metrics and Evaluation.
      In each International Classification of Disease–10 classification system
      The ICD-10 Classification of Mental and Behavioural Disorders: diagnostic criteria for research. World Health Organization.
      chapter 1 or more top burden conditions were selected to ensure representativeness of the chapter, for example, lower back pain and rheumatoid arthritis for musculoskeletal conditions. Each condition was also assessed against International Classification of Functioning, Disability, and Health core sets (in which these were available) to minimize redundancy across the selected conditions, for example, if 2 conditions were very similar in their impact, then only 1 was included (see Appendix 1 in Supplemental Materials found at https://doi.org/10.1016/j.jval.2021.11.1371). Eighteen conditions were identified (lower back pain, rheumatoid arthritis, depressive disorder, autistic spectrum disorder, migraine, Alzheimer’s disease and other dementias, hearing loss, cataract, diabetes, asthma, dermatitis, ischemic heart disease [IHD], stroke, edentulism and severe tooth loss, iron-deficiency anemia, breast cancer, and prostate cancer). IHD and stroke had a similar impact based on the International Classification of Functioning, Disability, and Health core sets, therefore, IHD was dropped. Search terms including the selected health conditions, informal care, and social care were used in the systematic search (Table 1 and Appendix 2 in Supplemental Materials found at https://doi.org/10.1016/j.jval.2021.11.1371). The search identified studies up to October 2017.
      Table 1Search term definitions
      OutcomesQoL and Wellbeing and related terms - those aspects of a person’s QoL or Wellbeing that are impacted by their health condition(s), health care, public health interventions, social care, and informal caring role.
      Populations and measuresPatients – conditions selected on the basis of data on the burden of disease.

      Informal carers - anyone caring “… for a friend or family member who cannot cope on their own without support because of illness, disability, a mental health problem or drug and alcohol dependency” (source: https://carers.org/what-carer) including parents caring for children with long-term health conditions.

      Social care users were identified based on public or privately-funded activities that they used to support everyday living either in their own homes or in supported-living facilities. The primary focus in the review was on “social care,” not social services because the latter includes other interventions related to employment and housing, among others, and groups such as children and families.

      Generic measures used in the populations of interest in evaluations of interventions and to assess QoL.
      MethodsQualitative reviews focused on outcomes and populations.

      Primary qualitative studies focused on the development of generic measures used in the populations of interest.
      LanguageEnglish
      CountriesA primary focus on studies from Europe, the United States, Canada, Australia, and New Zealand as these were considered the most similar to the United Kingdom.
      QoL indicates quality of life.

      Primary qualitative studies search strategy

      The project team and the steering group identified a list of commonly used generic health and social care measures. Two reviews were used to identify informal care measures: the reviews of Van Durme et al
      • Van Durme T.
      • Macq J.
      • Jeanmart C.
      • Gobert M.
      Tools for measuring the impact of informal caregiving of the elderly: a literature review.
      and Chow et al.
      • Chow M.Y.
      • Morrow A.M.
      • Cooper Robbins S.C.
      • Leask J.
      Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: a systematic review.
      Citation searches were undertaken to identify primary qualitative work from the development or testing of identified measures.

      Inclusion and exclusion criteria

      Reviews were included for consideration if they were qualitative including mixed methods, focused on QoL (impact of condition or interventions), and were directly elicited from adult patients, social care users, or informal carers (or a proxy when it was not possible for individuals to report their own QoL). Studies were excluded if they were only quantitative, not in English, focused only on side effects (considered too narrow), or focused only on posttraumatic growth, given that the interest is on deficits in QoL.
      Primary studies were included if they were qualitative or mixed methods and were related to the development or testing of the identified measures. Studies that were only quantitative or not in English were excluded. Informal care measures that focused only on the caring process, rather than QoL, were also excluded.

      Screening and selection

      All qualitative review titles and abstracts were screened by 1 reviewer following agreement of the process across 3 reviewers based on piloting using 1 randomly chosen condition. Two or more reviews were selected within each health condition, social care, and informal care group to ensure broad representativeness. No formal quality assessment was undertaken but the selection was based on qualitative reviews that reported clear methods, including search strategy, inclusion/exclusion criteria, synthesis methods, and original quotes.
      Extraction was undertaken independently by the 4 reviewers for all the primary qualitative studies on generic and social care measures. A selection of informal care measures was selected to represent the experience of caring based on different groups, for example, caring for the elderly versus unwell adults or children.

      Data Extraction and Synthesis

      The framework analysis method,
      • Ritchie J.
      • Spencer L.
      • Bryman A.
      • Burgess R.G.
      Qualitative data analysis for applied policy research.
      which uses a thematic indexing approach to analysis was used because it is suited to analysis where a conceptual model exists. A framework based on the conceptual model (Fig. 1) was developed in Microsoft Excel (Microsoft Corporation, Redmond, Washington) and quotes or summaries were extracted into it after it was independently piloted by 3 reviewers and refined on 1 condition. Study details (see Table 2
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      and 3
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      ,
      • Richardson J.R.J.
      • Peacock S.J.
      • Hawthorne G.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      Construction of the descriptive system for the assessment of quality of life AQoL-6D utility instrument.
      • Peacock S.
      • Richardson J.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      • Hawthorne G.
      Construction of the descriptive system for the assessment of quality of life (AQoL-6D) utility instrument. BMC.
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      • Fox-Rushby J.
      • Selai C.
      What concepts does the EQ-5D measure? Intentions and interpretations.
      • Shah K.K.
      • Mulhern B.
      • Longworth L.
      • Janssen M.F.
      Views of the UK General Public on important aspects of health not captured by EQ-5D.
      • van Dalen H.
      • Williams A.
      • Gudex C.
      Lay people’s evaluations of health: are there variations between different subgroups?.
      • Herdman M.
      • Gudex C.
      • Lloyd A.
      • et al.
      Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).
      • Al-Janabi H.
      • Flynn T.N.
      • Coast J.
      Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.
      • Al-Janabi H.
      • Keeley T.
      • Mitchell P.
      • Coast J.
      Can capabilities be self-reported? A think aloud study.
      • Castel L.D.
      • Williams K.A.
      • Bosworth H.B.
      • et al.
      Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data.
      • Kaplan R.M.
      • Bush J.W.
      • Berry C.C.
      Health status: types of validity and the index of well-being.
      • Hill S.
      • Harries U.
      • Popay J.
      Is the short form 36 (SF-36) suitable for routine health outcomes assessment in health care for older people? Evidence from preliminary work in community based health services in England.
      • Jenkinson C.
      • Peto V.
      • Coulter A.
      Making sense of ambiguity: evaluation in internal reliability and face validity of the SF 36 questionnaire in women presenting with menorrhagia.
      • Mallinson S.
      Listening to respondents::a qualitative assessment of the Short-Form 36 Health Status Questionnaire.
      • Üstün B.
      Disability and culture: universalism and diversity.
      World Health Organization
      QoL focus group moderator training.
      World Health Organization
      Report of WHOQoL focus group work.
      • Al-Janabi H.
      • Coast J.
      • Flynn T.N.
      What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
      • Szmukler G.I.
      • Burgess P.
      • Herrman H.
      • Benson A.
      • Colusa S.
      • Bloch S.
      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      • Farnik M.
      • Brożek G.
      • Pierzchała W.
      • Zejda J.E.
      • Skrzypek M.
      • Walczak Ł.
      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
      • Sutton E.J.
      • Coast J.
      Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.
      • Grewal I.
      • Lewis J.
      • Flynn T.
      • Brown J.
      • Bond J.
      • Coast J.
      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      ) were also extracted. Emerging themes and subthemes were added to the existing framework.
      Table 2List of included reviews and studies by International Classification of Disease Chapter and Condition
      Reference (Author, year)GroupResearch question/aims and objectivesMethodsResults
      Systematic search (Y/N/NR)Review method included (QL, QL+QT, NR)Review periodQuality check (Y/N)Number of articlesCountriesOverall sample size/ rangeLanguageAnalysis method
      Lawrence et al
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      Cardiovascular diseases: StrokeTo describe the experience of stroke from the perspective of young adults.YQLNRN4Not stated69EnglishNR
      Salter et al
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      Cardiovascular diseases: StrokeTo examine the contribution of the published qualitative literature to our understanding of the experience of living with stroke.YQL1980-2007Y9United States, Sweden, Canada, United Kingdom250EnglishDescriptive meta-synthesis
      Gater et al
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      Chronic respiratory diseases: AsthmaTo summarize the qualitative research conducted to inform the initial development of the Asthma Daily Symptom Diary.YQL1997-2012N18United States, China, United Kingdom, Denmark, Canada, France, Germany, Norway, The Netherlands, Australia11-60EnglishNR
      Disler et al
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      Chronic respiratory diseases: COPDTo increase understanding of the experience and ongoing needs of individuals living with COPD.YQL, Mixed1990-2013Y22NR4 - 63EnglishThematic synthesis
      Foss et al
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      Diabetes, urogenital, blood, and endocrine diseases: DiabetesTo provide insights based on a bottom-up approach that has the potential to develop innovations in policy/practice that are patient-led in the self-management of diabetes.NRQL2004-2014Y29The United Kingdom, Denmark, The Netherlands, Sweden, Norway, Switzerland, Germany, Belgium553EnglishStaged coding
      Vanstone, M et al
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      Diabetes, urogenital, blood, and endocrine diseases: DiabetesTo examine the perceptions of patients with uncontrolled type 1 diabetes on how it affects their lived experience and quality of life.YQL2005- 2015Y and N31Canada, United States, Europe, Australia, New ZealandPatients 752 caregiver or family member 103 clinicians 10EnglishStaged coding similar to grounded theory
      Garcia-Sanjuan et al
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      Digestive diseases: Inflammatory bowel disease/Crohn's diseaseTo identify and describe the evidence on life experiences and perceived social support of people affected by Crohn's disease.YQL +QT2002 to 2012N23United Kingdom, United States, Canada, Sweden, Chile, Brazil, Switzerland, New Zealand, Austria2-5960Spanish, Portuguese, German, and EnglishNr
      Hakanson
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      Digestive diseases: IBSTo review current knowledge about illness-related experienced of IBS from the perspective of everyday life, healthcare and self-care management.YQLStart of database to 2012N23European, North America, and, North East Asian144EnglishStepwise integrative review
      Depape and Lindsay
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      Mental health and substance abuse disorders: Autistic spectrum conditionsTo identify the experiences of individuals with ASC across major areas of life, including successes and challenges, and how these experiences affected by their developmental stage, such as childhood, adolescence, and adulthood?YQL1980-2014Y32NR318NRNarrative synthesis
      Toor et al
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      Mental health and substance abuse disorders: ASCTo identify what factors facilitate or act as obstacles for individuals with ASC transitioning to “and” or “or” in further and higher education and the support needs of individuals with ASC in this context.YQLNR (studies cover 2005-2015)Y12Belgium, United Kingdom, United States, Sweden3-23EnglishThematic synthesis
      Corcoran et al
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      Mental health and substance abuse disorders: depression old ageTo synthesize the qualitative studies that have been conducted on elders’ to better understand older people's perceptions and experiences.YQLAny year up to 2010N13Mostly the United States, also Sweden, and Australia356Not stated but assume EnglishFramework
      Connell et al
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      Mental health and substance abuse disorders: Mood, neurosis, and stress-related, personality and schizophrenia, schizotypal and delusional disordersTo identify the domains of quality of life important to people with mental health problems.YQLStart of database to 2010Y16Canada, United Kingdom, Sweden, United States, Australia, and New ZealandNrEnglishFramework
      Mollard
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      Mental health and substance abuse disorders: PPDTo synthesize existing qualitative literature on the first-hand experiences of women suffering from PPD, to uncover potential common themes.YQL2003-13N12United States, Australia, Norway, United Kingdom, India, Sweden, Canada, France, Ireland, Italy, Portugal, Austria, Switzerland, Japan, And Uganda485EnglishMeta-ethnography
      Bunzli et al
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      Musculoskeletal disorders: Low Back PainTo provide clinicians with a richer understanding of their patients’ lower back pain experience to highlight the importance of moving away from biomedical paradigms in clinical management.YQL1991-2011N24United Kingdom, United States, Sweden, The Netherlands, Australia, Canada, New Zealand713English, French, and SpanishMeta aggregate review
      Froud et al
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      Musculoskeletal disorders: Low back painTo inform the debate about the coverage of back pain outcome measure core sets, and to suggest areas worthy of exploration within healthcare consultations.YQL1991-2010Y49United States, Sweden, Israel, New Zealand, Australia, Canada, The Netherlands, Iran, South AfricaNrEnglishMeta-ethnography and a meta-narrative approach
      Daker-White et al
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      Musculoskeletal disorders: Rheumatoid ArthritisTo synthesize published qualitative studies concerning the lived experience of rheumatoid arthritis.YQL1975-2001 & updated 2002-2009Y1975-2001: 25

      2002-2009: 14
      1975-2001: Canada, Denmark, New Zealand the United Kingdom, United States1975-2001: 4-541975-2001 no restrictions on language

      2002-2009 English only
      Meta-ethnography
      Poh et al
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      Musculoskeletal disorders: Rheumatoid ArthritisTo provide an overview of the evidence on the experiences and needs of adults living with rheumatoid arthritis.YQL+QT2003 - March 2014N19 ql+ 19 qtCanada, Denmark, England, Lithuania, Morocco, The Netherlands, Portugal, Singapore, Sweden, South Korea, Taiwan, United StatesQl 5-39

      Qt 45-750
      EnglishIntegrative
      Adams et al
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      Neoplasms: Breast CancerTo identify their specific experiences, needs, and concerns if young women with breast cancer.YQL1989-2009Y17United States, Canada, Sweden, Australia, JapanNot indicatedEnglishMeta-ethnography
      Campbell-Enns and Woodgate
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      Neoplasms: Breast CancerTo summarize the psychosocial experience of women with breast cancer from a lifespan perspective.YQL1990-2014Y24United States, Australia, United Kingdom, Canada, Sweden, Korea427EnglishMeta-aggregate review
      Paterson et al
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      Neoplasms: Prostate CancerTo identify the different domains of unmet supportive care needs in men living with prostate cancer?YQL (9)+QT(8)1990-2014 (studies cover 1997-2014)Y17Canada, United Kingdom, United States, Australia, Sweden, Europe2914Narrative synthesis
      Rivas et al
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      Neoplasms: Prostate CancerTo summarize black and minority ethnic patients and partners' experiences of prostate cancer by examining the findings of existing qualitative studies.YQL2000-2015Y21 articles covering 13 studiesNREnglishMeta-ethnography
      Nichols et al
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      Neurological disorders: Chronic headacheTo systematically review the qualitative literature of the lived experience of people with a chronic headache disorder.YQL, QL+QT1988-2016Y4United States, Sweden, Italy, Finland, United Kingdom73English, Spanish, German, and FrenchThematic synthesis approach and meta-ethnographic approach
      de Boer et al
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      Neurological disorders: DementiaTo gain a better understanding of how people with dementia experience and value their situation.YNRStart of database to 2006N50Western CountriesNRDutch, English, German, and FrenchThematic
      O’Rourke et al
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      Neurological disorders: DementiaTo identify the factors that affect the quality of life from the perspective of people with dementia (PWD).YQL1975-2012Y12 articles (11 studies)United Kingdom, The United States, Canada, The The Netherlands, Ireland, Australia, And Japan345EnglishMeta-synthesis
      Greenwood and Smith
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      Neurological disorders: YODTo synthesize the qualitative literature on the experiences of people diagnosed of YOD.YQL1937-2016Y84 United Kingdom, 4 Western Countries87EnglishMeta-ethnography
      Kashbour et al
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      Oral disorders: EdentulismTo identify patients' experience of dental implant treatment at various stages of their implant treatment.YQLUp to July 2014Y10Sweden, United Kingdom, Canada, Nz206EnglishThematic
      Nordenram et al
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      Oral disorders: EdentulismTo identify patients' perceptions of loss of teeth, edentulism, and oral rehabilitation.YQLNot indicatedY7Sweden, Brazil, United Kingdom,168EnglishThematic
      Bennion et al
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      Sense organ diseases: AMDTo explore people's experiences of living with AMD to ensure recommendations for practice fit with patients' demands.YQL1996-2012Y9Nr165EnglishInterpretative analysis following the principles of meta-synthesis
      Nyman et al
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      Sense organ diseases: Vision loss in later lifeTo review perceived emotional Wellbeing in older people with visual impairment and perceived factors that inhibit/facilitate psychosocial adjustment to vision loss.YQL1st Jan 1980 - 31st Dec 2010Y17United States, The Netherlands, Sweden, United Kingdom, Australia538EnglishInductive thematic-style
      Barker et al
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      Sense organ diseases: Hearing lossTo examine the psychosocial experiences of hearing loss from the perspectives of both the person with hearing loss and their communication partner.YQL + Mixedstart of database to 2016Y12NRNRNRMeta-synthesis
      Lehane et al
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      Sense organ diseases: Hearing lossTo identify the effect of sensory loss, and associated communication difficulties, on couples’ relational and psychosocial adjustment.YQL+QTstart of database to 2014Y24Australia, Norway, South Africa, United Kingdom, United States, Sweden, Canada7-19EnglishNR
      Hong et al
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      Skin and subcutaneous diseases: DermatitisTo review the psychological, social, and occupational impact of psoriasis and atopic dermatitis.NNRNot indicatedN32NRNRNRNarrative
      Nakayama et al
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      Skin and subcutaneous diseases: Systemic Sclerosis in place of dermatitisTo describe the patients’ perspectives and experiences of living with systemic sclerosis.YQLStart of database to 2014Y26United Kingdom, Canada, United States, Belgium, France, Austria, Turkey, Germany, Switzerland, Sweden, Romania, The Netherlands463NRThematic
      Pozzebon et al
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      Informal Care - DementiaTo synthesize the findings of published qualitative research that has focused on the spousal caregiver’s experience of living with a partner diagnosed of dementia.YQL1980-2014Y16NR234EnglishThematic
      Priestley and McPherson
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      Informal carer - DepressionTo explore the experiences of family members caring for a partner or relative with depression, to consider the findings in light of the impact on family relationships and how policy and practice might seek to best support caregivers in their role.YQLNRY15Australia, Canada, Chile, Denmark, Iran, Norway, Sweden, United Kingdom, United States263NRMeta-ethnography
      Topcu et al
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      Informal carers - MSTo identify factors that may affect the QoL of MS carers positively “and” or “or” negatively, and derive a new conceptual understanding of the views and experiences of carers of patients with MS-related to caregiving to help inform future research and practice.YQLNR - search conducted 2014Y17NR1023EnglishMeta-ethnography
      Rand and Fox
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      Informal carers - not condition-specificTo identify the common factors that affect carers’ quality of life across different care settings.YQL+QT - QL only extracted2002-2012N7The Netherlands, India, United States, United Kingdom, Australia, Honk Kong, Denmark, SwedenNREnglishReview of reviews
      Shaw et al
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      Social care - Frail elderlyTo assess barriers to respite care and to identify needs for service provision.YQLUp to Oct 2005; update 2008Y70 articles (69 studies)United Kingdom, United States, Canada, Australia/New Zealand, Other1-597 (content analysis for large n)EnglishMeta-synthesis
      Griffith et al
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      Social care - Intellectual disabilitiesTo examine and bring together qualitative research that reports the experiences of individuals with ID who engage in challenging behavior when in receipt of support services and how individuals feel that support services they receive affect their challenging behavior.NRQLUp to Jan 2013Y17United Kingdom, United States, Canada184EnglishThematic analysis
      Vaismoradi et al
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      Social care - Nursing homesAims to integrate current qualitative international findings and enhance the experiences of and perspectives on pain and pain management in the context of nursing homes.YQLNot statedY6United States, Norway, Iceland, United Kingdom, Australia109+EnglishInterpretative thematic approach
      Fjordside & Morville
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      Social care - Older peopleTo review the literature on how older people perceive opportunities and limitations with regard to participation in autonomous decisions concerning their daily care in their own homes.YQLUp to May 2014Y12Sweden, Denmark, Canada, Australia, Norway, United Kingdom,250EnglishThematic
      Bradley et al
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      Social Care - SPDCTo systematically evaluate the literature on patient-perceived psychosocial experiences of attendance at SPDC.YQL+QTUp to Jan 2009Y12NR4-102EnglishThematic
      AMD indicates age-related macular degeneration; ASC, autistic spectrum conditions; COPD, chronic obstructive pulmonary disorder; IBS, inflammatory bowel symptoms; MS, multiple sclerosis; N, No; NR, not reported; PPD, postpartum depression; QL, qualitative; QT, quantitative; SPDC, Specialist Palliative Day Care; Y, Yes; YOD, young-onset dementia.
      Table 3List of included studies for generic, informal care, and social care measures
      Reference (Author, year)MeasureResearch question/aims and objectivesLanguageMethods included (QL, QL+QT, NR)MethodsInclusion criteriaOverall sample size/rangeCountry
      Richardson et al 2012
      • Richardson J.R.J.
      • Peacock S.J.
      • Hawthorne G.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      Construction of the descriptive system for the assessment of quality of life AQoL-6D utility instrument.
      ; Peacock et al 2010
      • Peacock S.
      • Richardson J.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      • Hawthorne G.
      Construction of the descriptive system for the assessment of quality of life (AQoL-6D) utility instrument. BMC.
      Generic measure: AQoL 6DTo create a descriptive system - a set of questions whose answers describe a person's health state. To create additional items for the item bank.EnglishQL + QTFocus groupsHealth professionals and members of the public22Australia
      Paterson 2004
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      Generic measure: Dartmouth Primary care Cooperative Information Project (COOP)To explore patients’ experience of completing 3 outcome questionnaires – EQ-5D, COOP-WONCA charts, and MYMOP.EnglishQLIn-depth and cognitive interviews. Grounded theory and content analysis.Patients with a health problem of at least 6 months duration, receiving acupuncture and available within 5 weeks of treatment23United Kingdom
      Fox-Rushby and Selai 2003
      • Fox-Rushby J.
      • Selai C.
      What concepts does the EQ-5D measure? Intentions and interpretations.
      Generic measure: EQ-5DTo summarize the work on how EQ-5D is interpreted from a number of studies with EQ members, patients, and members of the general population in different contexts.English, Dutch and DanishQL+QTContent analysis and narrative summary.NA (Studies on the interpretation of EQ-5D using official translations were relevant)23-270United Kingdom, The Netherlands, Denmark
      Shah et al 2017
      • Shah K.K.
      • Mulhern B.
      • Longworth L.
      • Janssen M.F.
      Views of the UK General Public on important aspects of health not captured by EQ-5D.
      Generic measure: EQ-5DTo analyze the views of the United Kingdom general public about important aspects of health considered to be missing from the EQ-5D.EnglishQLInterview with an open-ended question on what is important for health content analysis.A representative sample of the UK general public179United Kingdom
      van Dalen et al 1994
      • van Dalen H.
      • Williams A.
      • Gudex C.
      Lay people’s evaluations of health: are there variations between different subgroups?.
      Generic measure: EQ-5DTo elicit lay concepts of health and to see whether these are related to various sociodemographic factors.EnglishQLInterview with open-ended and structured questions. Thematic coding.Adult (18 and over) general representative population196United Kingdom
      Paterson 2004
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      Generic measure: EQ-5DTo explore patients’ experience of completing 3 outcome questionnaires – EQ-5D, COOP-WONCA charts and Measure Yourself Medical Outcome Profile (MYMOP).EnglishQLIn-depth and cognitive interviews. Grounded theory and content analysis.Patients with a health problem of at least 6 months duration, receiving acupuncture and available within 5 weeks of treatment23United Kingdom
      Herdman et al 2011
      • Herdman M.
      • Gudex C.
      • Lloyd A.
      • et al.
      Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).
      Generic measure: EQ-5D-5LTo select severity labels for the EQ-5D-5L and to test the face and content validity of the resulting instrument.English and SpanishQLFocus groups and interviews.General population and patients80 interviews

      16 focus groups
      United Kingdom, Spain
      Al-Janabi et al 2012
      • Al-Janabi H.
      • Flynn T.N.
      • Coast J.
      Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.
      Generic measure: ICECAP-ATo elicit concepts and develop items for a capability Wellbeing measure for the general adult population for use in economic evaluation.EnglishQLInterviews. Thematic analysis.Informants were selected for interview from 4 electoral wards in England chosen to maximize the socio-economic diversity of the sample and to ensure ethnic diversity and representation from both urban and rural areas36 phase I, 18 phases IIUnited Kingdom
      Al-Janabi et al 2013
      • Al-Janabi H.
      • Keeley T.
      • Mitchell P.
      • Coast J.
      Can capabilities be self-reported? A think aloud study.
      Generic measure: ICECAP-ATo investigate whether individuals could provide information on their capabilities.EnglishQLThink aloud and semistructured interviews. Framework analysisInformants were selected from 4 geographical wards in the UK with wards chosen for maximum socio-economic diversity34United Kingdom
      Castel et al 2008
      • Castel L.D.
      • Williams K.A.
      • Bosworth H.B.
      • et al.
      Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data.
      Generic measure: PROMISTo assess the content validity of the PROMIS social health item banks.EnglishQLFocus groups. Thematic codingParticipants who had reported social health limitations25United States
      Kaplan et al 1976
      • Kaplan R.M.
      • Bush J.W.
      • Berry C.C.
      Health status: types of validity and the index of well-being.
      Generic measure: Quality of Wellbeing scaleTo clarify the meaning of the term "validity" as it applies to health status measures in general, and, second, to present a preliminary assessment of the validity of the IWB.EnglishQL+QTOpen-ended follow-up questionProbability sample of San Diego area households867United States
      Hill et al 1996
      • Hill S.
      • Harries U.
      • Popay J.
      Is the short form 36 (SF-36) suitable for routine health outcomes assessment in health care for older people? Evidence from preliminary work in community based health services in England.
      Generic measure: Short Form 36 (SF-36)To examine the short form 36 (SF-36) health status measure when used to assess older people's views of the outcome of community-based health care.EnglishQL +QTInterviews with a subsample of the interviewees who completed a questionnairePatients are referred to mental health or incontinence services with a new episode of treatment. Mental health patients had to have a score do 20 or above in the mini-mental state score47United Kingdom
      Jenkinson et al 1996
      • Jenkinson C.
      • Peto V.
      • Coulter A.
      Making sense of ambiguity: evaluation in internal reliability and face validity of the SF 36 questionnaire in women presenting with menorrhagia.
      Generic measure: SF-36To determine the face validity and internal reliability of the short form 36 (SF 36) health survey questionnaire in women presenting with menorrhagia.EnglishQLInterviews. Content analysisWomen with excessive menstrual bleeding49United Kingdom
      Mallinson 2002
      • Mallinson S.
      Listening to respondents::a qualitative assessment of the Short-Form 36 Health Status Questionnaire.
      Generic measure: SF-36To explore the various interpretations which arose during the administration of the SF-36 health status questionnaire.EnglishQLInterviews. Framework analysisPeople aged 65 yrs. or more who were newly referred to 2 teams of community physiotherapists and one team of rehabilitation occupational therapists56United Kingdom
      Üstün 2001
      • Üstün B.
      Disability and culture: universalism and diversity.
      Generic measure: WHODASTo identify the cultural consistency of the disability construct found in the WHODAS to identify appropriate assessment domains and facets and eventually appropriate questions for instrument development.Different languagesQL+QTKey informant interviews and focus groupsPrototypical representation to identify the best possible informants within each culture. The UK included health professionals, other professionals, consumers, health service users, individuals with a physical disability, and caregivers45 + 2 focus groups for the United KingdomCambodia, Canada, Greece, India, Japan, Luxemburg, The Netherlands, Nigeria, Romania, Spain, Tunisia, Turkey, United Kingdom
      WHO 1992
      World Health Organization
      QoL focus group moderator training.
      Generic measure: WHOQoLTo check the validity and comprehensiveness of the provisional WHOQoL domains and facets. Secondary aims included providing preliminary indications of the perceived importance of facets, establishing if any facets are difficult to discuss in any of the field centers.Different languagesQL+QTDiscussion groups.Individuals demographically typical of the population6-8 in each field centerThailand, United Kingdom, India, Australia, Russia, Croatia, The Netherlands, Panama, United States
      World Health Organization 1993
      World Health Organization
      Report of WHOQoL focus group work.
      Generic measure: WHOQoL(1) To check further on the existing facet structure; (2) to generate items/questions for the pilot WHOQoL and; (3) To obtain preliminary importance ratings of facets from participants.Different languagesQL+QTFocus groups. Structured analysis.Inpatient and outpatient users, the general population including informal carers, health personnel6-8 in each focus group; minimum of 2 focus groups for each target groupThailand, United Kingdom, India, Australia, Russia, Croatia, The Netherlands, Panama, United States
      Al-Janabi et al 2008
      • Al-Janabi H.
      • Coast J.
      • Flynn T.N.
      What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
      Informal Carer Measure: Carer Experience ScaleTo develop a concise measure of the caring experience for use in economic evaluation.EnglishQLMeta-ethnography followed by semistructured interviews. Framework analysis.Purposive sampling across qualitative studies on older people and informal care experience6/44 studies in meta-ethnography

      16 semistructured interviews
      United Kingdom, United States, Australia
      Szmukler et al 1996
      • Szmukler G.I.
      • Burgess P.
      • Herrman H.
      • Benson A.
      • Colusa S.
      • Bloch S.
      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      Informal Carer Measure: Experience of Caregiving

      Inventory
      To develop a practical, comprehensive, and a valid self-report measure of the experience of caring for a relative with a serious mental illness.EnglishQLFocus groups and interviews. Content analysisTwo major self-help organizations focused on mental health120Australia
      Farnik et al 2010
      • Farnik M.
      • Brożek G.
      • Pierzchała W.
      • Zejda J.E.
      • Skrzypek M.
      • Walczak Ł.
      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
      Informal Carer Measure: QLCCDQTo describe the development of the QLCCDQ and report on the assessment of its validity and reliability.NRQL+QTSemistructured interviews and rating importance of items.Health professionals (pediatricians, nurses) and parents of children with diabetes, asthma or eczema28 health professionals

      22 parents

      65 parents rated the importance
      Poland
      Netten et al 2012
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      Social Care Measure: ASCOTTo develop an equivalent measure to the QALY in health that would reflect the particular characteristics of social care and could be used in a range of circumstances to reflect the impact and value of social care interventions.EnglishQL+QTCognitive debriefing interviewsDecision-makers used to identify important outcomes in social care30United Kingdom
      Sutton and Coast 2013
      • Sutton E.J.
      • Coast J.
      Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.
      Social Care Measure: End of life careTo develop a descriptive system for a measure for use in an economic evaluation of end-of-life care.EnglishQLInterviews. Constant comparison analysis.People aged 65 were recruited from the general population, residential care, and receiving palliative care23United Kingdom
      Grewal et al 2006
      • Grewal I.
      • Lewis J.
      • Flynn T.
      • Brown J.
      • Bond J.
      • Coast J.
      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      Social Care Measure: ICECAP-OTo determine the important attributes of quality of life for older people.EnglishQLInterviews.

      Framework analysis
      Purposive sampling to include the range of personal characteristics (sex, age, health, household composition, occupation)40United Kingdom
      AQoL indicates assessment of quality of life; ASCOT, adult social care outcomes toolkit; COOP-WONCA, Cooperative World Organization of National Colleges, Academies and academic associations of general practioners/family physicians; ICECAP-A, ICEpop CAPability measure for Adults; ICECAP-O, ICEpop CAPability measure for older people; IWB, index of Wellbeing; MYMOP, measure yourself medical outcome profile; N, No; NA, not applicable; PROMIS, patient-reported outcomes measurement information system; QALY, quality-adjusted life-years; QL, qualitative; QLCCDQ, quality of life in the child’s chronic disease questionnaire; QT, quantitative; WHO, World Health Organization; WHODAS, WHO disability assessment schedule; WHOQoL, WHO quality of life assessment; Y, Yes; YOD, young-onset dementia.
      Thematic synthesis was undertaken to identify key themes and subthemes, associations, and key terminology. Subsequent discussions with the wider team and the stakeholder groups resulted in changes in themes/subthemes.

      Theme Selection

      A set of criteria for domain selection were drawn up that was related to good questionnaire design
      • Fayers P.M.
      • Machin D.
      Quality of Life: The Assessment, Analysis and Interpretation of Patient-Reported Outcomes.
      ,
      • Menon G.
      Book Review: Asking Questions: The Definitive Guide to Questionnaire Design for Market Research, Political Polls, and Social and Health Questionnaires.
      and the overall aims of the project to support the selection of themes and subthemes.
      • Peasgood T.
      • Mukuria C.
      • Carlton J.
      • Connell J.
      • Brazier J.
      Criteria for item selection for a preference-based measure for use in economic evaluation.
      This included whether they were: (1) applicable to QoL for most of the groups; (2) not strongly related to other themes/subthemes; or (3) nonjudgmental to avoid social desirability problems and considering what participants would be willing to disclose (eg, sexual intimacy); and not included if they were considered to be instrumental to a higher-level theme (eg, dexterity was considered to be instrumental to doing activities).

      Stakeholder Involvement

      Different stakeholder groups (National Institute of Health and Care Excellence staff, members of the EuroQol Descriptive Working Group, the Project Steering Group) were asked to comment on the protocol and the synthesized findings. The EuroQol Descriptive Working Group and the Steering and Advisory groups had members drawn from the United Kingdom and other countries. Members of the UK public with a health condition (not specified) or formal/informal carers of adults were recruited to a public involvement group (n = 7). The public involvement group was asked to consider which themes and subthemes they would include or exclude, and this information was considered alongside the synthesis of the results from the review.

      Results

      Study Selection

      A total of 33 qualitative reviews were included for health conditions (Fig. 2 and Table 2
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      ,
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      ). Reviews for chronic headache, vision loss and age-related macular degeneration, and systemic sclerosis were included for migraine, cataract, and dermatitis; none was included for anemia. A qualitative review of QoL in all mental health conditions that was identified separately, Connell et al,
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      was also included. Four informal qualitative reviews were selected based on the individuals being cared for (general
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      and those caring for individuals with dementia,
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      multiple sclerosis,
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      and depression
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      ) (Fig. 3 and Table 2
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      ). Five social care reviews focused on support for those with intellectual disabilities,
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      palliative care,
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      and care for the elderly (daily care in their own home,
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      respite care,
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      and nursing homes
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      ) (Fig. 2 and Table 2
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      ) were included.
      Figure thumbnail gr2
      Figure 2Qualitative reviews search results.
      The citation search identified 18 studies that were related to generic measure development or validation (Table 3
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      ,
      • Richardson J.R.J.
      • Peacock S.J.
      • Hawthorne G.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      Construction of the descriptive system for the assessment of quality of life AQoL-6D utility instrument.
      • Peacock S.
      • Richardson J.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      • Hawthorne G.
      Construction of the descriptive system for the assessment of quality of life (AQoL-6D) utility instrument. BMC.
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      • Fox-Rushby J.
      • Selai C.
      What concepts does the EQ-5D measure? Intentions and interpretations.
      • Shah K.K.
      • Mulhern B.
      • Longworth L.
      • Janssen M.F.
      Views of the UK General Public on important aspects of health not captured by EQ-5D.
      • van Dalen H.
      • Williams A.
      • Gudex C.
      Lay people’s evaluations of health: are there variations between different subgroups?.
      • Herdman M.
      • Gudex C.
      • Lloyd A.
      • et al.
      Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).
      • Al-Janabi H.
      • Flynn T.N.
      • Coast J.
      Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.
      • Al-Janabi H.
      • Keeley T.
      • Mitchell P.
      • Coast J.
      Can capabilities be self-reported? A think aloud study.
      • Castel L.D.
      • Williams K.A.
      • Bosworth H.B.
      • et al.
      Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data.
      • Kaplan R.M.
      • Bush J.W.
      • Berry C.C.
      Health status: types of validity and the index of well-being.
      • Hill S.
      • Harries U.
      • Popay J.
      Is the short form 36 (SF-36) suitable for routine health outcomes assessment in health care for older people? Evidence from preliminary work in community based health services in England.
      • Jenkinson C.
      • Peto V.
      • Coulter A.
      Making sense of ambiguity: evaluation in internal reliability and face validity of the SF 36 questionnaire in women presenting with menorrhagia.
      • Mallinson S.
      Listening to respondents::a qualitative assessment of the Short-Form 36 Health Status Questionnaire.
      • Üstün B.
      Disability and culture: universalism and diversity.
      World Health Organization
      QoL focus group moderator training.
      World Health Organization
      Report of WHOQoL focus group work.
      • Al-Janabi H.
      • Coast J.
      • Flynn T.N.
      What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
      • Szmukler G.I.
      • Burgess P.
      • Herrman H.
      • Benson A.
      • Colusa S.
      • Bloch S.
      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      • Farnik M.
      • Brożek G.
      • Pierzchała W.
      • Zejda J.E.
      • Skrzypek M.
      • Walczak Ł.
      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
      • Sutton E.J.
      • Coast J.
      Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.
      • Grewal I.
      • Lewis J.
      • Flynn T.
      • Brown J.
      • Bond J.
      • Coast J.
      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      ). Eleven carer measure studies were identified and 3 of these were selected based on the target populations (carer of adults or children) (Table 3
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      ,
      • Richardson J.R.J.
      • Peacock S.J.
      • Hawthorne G.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      Construction of the descriptive system for the assessment of quality of life AQoL-6D utility instrument.
      • Peacock S.
      • Richardson J.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      • Hawthorne G.
      Construction of the descriptive system for the assessment of quality of life (AQoL-6D) utility instrument. BMC.
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      • Fox-Rushby J.
      • Selai C.
      What concepts does the EQ-5D measure? Intentions and interpretations.
      • Shah K.K.
      • Mulhern B.
      • Longworth L.
      • Janssen M.F.
      Views of the UK General Public on important aspects of health not captured by EQ-5D.
      • van Dalen H.
      • Williams A.
      • Gudex C.
      Lay people’s evaluations of health: are there variations between different subgroups?.
      • Herdman M.
      • Gudex C.
      • Lloyd A.
      • et al.
      Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).
      • Al-Janabi H.
      • Flynn T.N.
      • Coast J.
      Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.
      • Al-Janabi H.
      • Keeley T.
      • Mitchell P.
      • Coast J.
      Can capabilities be self-reported? A think aloud study.
      • Castel L.D.
      • Williams K.A.
      • Bosworth H.B.
      • et al.
      Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data.
      • Kaplan R.M.
      • Bush J.W.
      • Berry C.C.
      Health status: types of validity and the index of well-being.
      • Hill S.
      • Harries U.
      • Popay J.
      Is the short form 36 (SF-36) suitable for routine health outcomes assessment in health care for older people? Evidence from preliminary work in community based health services in England.
      • Jenkinson C.
      • Peto V.
      • Coulter A.
      Making sense of ambiguity: evaluation in internal reliability and face validity of the SF 36 questionnaire in women presenting with menorrhagia.
      • Mallinson S.
      Listening to respondents::a qualitative assessment of the Short-Form 36 Health Status Questionnaire.
      • Üstün B.
      Disability and culture: universalism and diversity.
      World Health Organization
      QoL focus group moderator training.
      World Health Organization
      Report of WHOQoL focus group work.
      • Al-Janabi H.
      • Coast J.
      • Flynn T.N.
      What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
      • Szmukler G.I.
      • Burgess P.
      • Herrman H.
      • Benson A.
      • Colusa S.
      • Bloch S.
      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      • Farnik M.
      • Brożek G.
      • Pierzchała W.
      • Zejda J.E.
      • Skrzypek M.
      • Walczak Ł.
      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
      • Sutton E.J.
      • Coast J.
      Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.
      • Grewal I.
      • Lewis J.
      • Flynn T.
      • Brown J.
      • Bond J.
      • Coast J.
      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      ), whereas 4 social care measures were identified, and 3 were included as 2 referenced
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      the same information.

      Study Characteristics

      Most reviews were systematic (n = 39/42), only qualitative studies (n = 32/42), and undertook quality checks (n = 30/42) (Table 2
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      ). The most common countries were the United Kingdom, United States, Canada, and other European countries primarily focusing on English language studies (Table 2
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      • Rand S.
      • Fox D.
      Review of the factors that affect carers’ quality of life. Vol DP 2837. Personal Social Services Research Unit.
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      • Bradley S.E.
      • Frizelle D.
      • Johnson M.
      Patients’ psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      • Vaismoradi M.
      • Wang I.L.
      • Turunen H.
      • Bondas T.
      Older people’s experiences of care in nursing homes: a meta-synthesis.
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      • Lawrence M.
      Young adults’ experience of stroke: a qualitative review of the literature.
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      • Gater A.
      • Nelsen L.
      • Fleming S.
      • et al.
      Assessing asthma symptoms in adolescents and adults: qualitative research supporting development of the asthma daily symptom diary.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      • Foss C.
      • Knutsen I.
      • Kennedy A.
      • et al.
      Connectivity, contest and the ties of self-management support for type 2 diabetes: a meta-synthesis of qualitative literature.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      • Toor N.
      • Hanley T.
      • Hebron J.
      The facilitators, obstacles and needs of individuals with autism spectrum conditions accessing further and higher education: a systematic review.
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      • Bunzli S.
      • Watkins R.
      • Smith A.
      • Schütze R.
      • O’Sullivan P.
      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      • Adams E.
      • McCann L.
      • Armes J.
      • et al.
      The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography.
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      • Paterson C.
      • Robertson A.
      • Smith A.
      • Nabi G.
      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      • Rivas C.
      • Matheson L.
      • Nayoan J.
      • et al.
      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      • De Boer M.E.
      • Hertogh C.M.
      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      • Kashbour W.A.
      • Rousseau N.S.
      • Ellis J.S.
      • Thomason J.M.
      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
      • Nordenram G.
      • Davidson T.
      • Gynther G.
      • et al.
      Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      • Barker A.B.
      • Leighton P.
      • Ferguson M.A.
      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      • Lehane C.M.
      • Dammeyer J.
      • Elsass P.
      Sensory loss and its consequences for couples’ psychosocial and relational wellbeing: an integrative review.
      • Hong J.
      • Koo B.
      • Koo J.
      The psychosocial and occupational impact of chronic skin disease.
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      ), although some included other languages, for instance, the article of Garcia-Sanjuan et al
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      included Spanish, Portuguese, and German studies. Most of the studies on measures were undertaken in a single country (n = 17) and most of those were in the United Kingdom (n = 11) (Table 3
      • Netten A.
      • Burge P.
      • Malley J.
      • et al.
      Outcomes of social care for adults: developing a preference-weighted measure.
      ,
      • Richardson J.R.J.
      • Peacock S.J.
      • Hawthorne G.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      Construction of the descriptive system for the assessment of quality of life AQoL-6D utility instrument.
      • Peacock S.
      • Richardson J.
      • Iezzi A.
      • Elsworth G.
      • Day N.A.
      • Hawthorne G.
      Construction of the descriptive system for the assessment of quality of life (AQoL-6D) utility instrument. BMC.
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      • Fox-Rushby J.
      • Selai C.
      What concepts does the EQ-5D measure? Intentions and interpretations.
      • Shah K.K.
      • Mulhern B.
      • Longworth L.
      • Janssen M.F.
      Views of the UK General Public on important aspects of health not captured by EQ-5D.
      • van Dalen H.
      • Williams A.
      • Gudex C.
      Lay people’s evaluations of health: are there variations between different subgroups?.
      • Herdman M.
      • Gudex C.
      • Lloyd A.
      • et al.
      Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).
      • Al-Janabi H.
      • Flynn T.N.
      • Coast J.
      Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.
      • Al-Janabi H.
      • Keeley T.
      • Mitchell P.
      • Coast J.
      Can capabilities be self-reported? A think aloud study.
      • Castel L.D.
      • Williams K.A.
      • Bosworth H.B.
      • et al.
      Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data.
      • Kaplan R.M.
      • Bush J.W.
      • Berry C.C.
      Health status: types of validity and the index of well-being.
      • Hill S.
      • Harries U.
      • Popay J.
      Is the short form 36 (SF-36) suitable for routine health outcomes assessment in health care for older people? Evidence from preliminary work in community based health services in England.
      • Jenkinson C.
      • Peto V.
      • Coulter A.
      Making sense of ambiguity: evaluation in internal reliability and face validity of the SF 36 questionnaire in women presenting with menorrhagia.
      • Mallinson S.
      Listening to respondents::a qualitative assessment of the Short-Form 36 Health Status Questionnaire.
      • Üstün B.
      Disability and culture: universalism and diversity.
      World Health Organization
      QoL focus group moderator training.
      World Health Organization
      Report of WHOQoL focus group work.
      • Al-Janabi H.
      • Coast J.
      • Flynn T.N.
      What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
      • Szmukler G.I.
      • Burgess P.
      • Herrman H.
      • Benson A.
      • Colusa S.
      • Bloch S.
      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      • Farnik M.
      • Brożek G.
      • Pierzchała W.
      • Zejda J.E.
      • Skrzypek M.
      • Walczak Ł.
      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
      • Sutton E.J.
      • Coast J.
      Development of a supportive care measure for economic evaluation of end-of-life care using qualitative methods.
      • Grewal I.
      • Lewis J.
      • Flynn T.
      • Brown J.
      • Bond J.
      • Coast J.
      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      ).

      Synthesis of Results

      Seven broad themes were identified: feelings and emotions; activity; self-identity; relationships and social connections; “coping, autonomy, and control;” physical sensations; and cognition (Fig. 3).

      Feelings and emotions

      Feelings and emotions were an important theme (Fig. 3). Fear or feeling scared was merged with anxiety. Cognition-related subthemes were initially extracted within this theme as they were considered to be related to mental health, but these were separated into a separate theme following discussions with stakeholders who considered it conceptually different to feelings and emotions.
      Sadness, depression, and related concepts such as emotional pain and grief were common in mental health
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      ,
      • Corcoran J.
      • Brown E.
      • Davis M.
      • Pineda M.
      • Kadolph J.
      • Bell H.
      Depression in older adults: a meta-synthesis.
      ,
      • Szmukler G.I.
      • Burgess P.
      • Herrman H.
      • Benson A.
      • Colusa S.
      • Bloch S.
      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      ,
      • Kelly M.A.
      • Morse J.Q.
      • Stover A.
      • et al.
      Describing depression: congruence between patient experiences and clinical assessments.
      and other conditions. These feelings were associated with physical symptoms such as pain in rheumatoid arthritis,
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      ,
      • Poh L.W.
      • He H.G.
      • Lee C.S.
      • Cheung P.P.
      • Chan W.C.
      An integrative review of experiences of patients with rheumatoid arthritis.
      poor vision,
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      intellectual disabilities,
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      providing care including feeling sad because of the experience of those cared for,
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      ,
      • Priestley J.
      • McPherson S.
      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      ,
      • Farnik M.
      • Brożek G.
      • Pierzchała W.
      • Zejda J.E.
      • Skrzypek M.
      • Walczak Ł.
      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
      and lack of physical capability.
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      Impact on the ability to take part in “normal life” was a common reason for feeling low.
      • Pozzebon M.
      • Douglas J.
      • Ames D.
      Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research.
      ,
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      ,
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      ,
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      ,
      • Grewal I.
      • Lewis J.
      • Flynn T.
      • Brown J.
      • Bond J.
      • Coast J.
      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      Acceptance of what was happening was associated with avoiding negative feelings “I am not depressed about it, I just accept it.”
      • Bennion A.E.
      • Shaw R.L.
      • Gibson J.M.
      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      The use of the term “depressed” was sometimes considered to be related to a diagnosis of depression rather than feelings of sadness.
      • Paterson C.
      Seeking the patient’s perspective: a qualitative assessment of EuroQol, COOP-WONCA charts and MYMOP.
      ,
      • Fox-Rushby J.
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      ,
      World Health Organization
      Report of WHOQoL focus group work.
      Feelings of joy or happiness were considered in studies that assessed the meaning of QoL for respondents with dementia,
      • O’Rourke H.M.
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      who identified functioning and social activity as related to these concepts, and more generally
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      Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.
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      World Health Organization
      QoL focus group moderator training.
      . There was also enjoyment in receiving
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      and giving support.
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      • Szmukler G.I.
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      Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
      Anxiety or worry along with related concepts of fear was associated with how physical symptoms could be managed
      • Kashbour W.A.
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      Patients’ experiences of dental implant treatment: a literature review of key qualitative studies.
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      • Nyman S.R.
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      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      including their progression and impact on the future.
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      The experience of living with stroke: a qualitative meta-synthesis.
      ,
      • Bunzli S.
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      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
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      • Poh L.W.
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      An integrative review of experiences of patients with rheumatoid arthritis.
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      • Farnik M.
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      Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
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      • Kelly M.A.
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      Describing depression: congruence between patient experiences and clinical assessments.
      It also occurred because of limitations imposed by conditions or situations, for example, on leisure.
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      Quality of life of people with mental health problems: a synthesis of qualitative research.
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      • Vanstone M.
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      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      ,
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      For carers, there was anxiety in how to manage their caring and also the impact of symptoms in those they cared for.
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      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      ,
      • Priestley J.
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      Experiences of adults providing care to a partner or relative with depression: a meta-ethnographic synthesis.
      In potentially life-limiting conditions such as cancer,
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      Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review.
      systemic sclerosis,
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      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      and chronic obstructive pulmonary disease,
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      there was fear of death. Few studies considered the positive end of the scale, such as feelings of calm or feeling relaxed.
      • van Dalen H.
      • Williams A.
      • Gudex C.
      Lay people’s evaluations of health: are there variations between different subgroups?.
      Some studies related spirituality as a way to remain worry-free in the context of change.
      • Rivas C.
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      Ethnicity and the prostate cancer experience: a qualitative metasynthesis.
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      • Nyman S.R.
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      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
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      Developing attributes for a generic quality of life measure for older people: preferences or capabilities?.
      Feelings of vulnerability or lack of safety were experienced
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      Outcomes of social care for adults: developing a preference-weighted measure.
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      • Connell J.
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      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      ,
      • Vanstone M.
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      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      ,
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      because of health conditions, for example, in mental health
      • Connell J.
      • Brazier J.
      • O'Cathain A.
      • Lloyd-Jones M.
      • Paisley S.
      Quality of life of people with mental health problems: a synthesis of qualitative research.
      ,
      • Mollard E.K.
      A qualitative meta-synthesis and theory of postpartum depression.
      or because of caregiving.
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      Some informal carers feared that those they cared for could cause them harm.
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.
      Receipt of supportive care was associated with reductions of these feelings.
      • Garcia-Sanjuan S.
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      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      Hopelessness was framed around uncertainty and frustration with diagnosis or situations
      • Disler R.T.
      • Green A.
      • Luckett T.
      • et al.
      Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research.
      ,
      • Bunzli S.
      • Watkins R.
      • Smith A.
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      Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain.
      ,
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      ,
      • De Boer M.E.
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      • Dröes R.M.
      • Riphagen I.I.
      • Jonker C.
      • Eefsting J.A.
      Suffering from dementia - the patient’s perspective: a review of the literature.
      ,
      • Greenwood N.
      • Smith R.
      The experiences of people with young-onset dementia: a meta-ethnographic review of the qualitative literature.
      and helplessness with lifelong conditions.
      • DePape A.M.
      • Lindsay S.
      Lived experiences from the perspective of individuals with autism spectrum disorder: a qualitative meta-synthesis.
      ,
      • Corcoran J.
      • Brown E.
      • Davis M.
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      • Bell H.
      Depression in older adults: a meta-synthesis.
      ,
      • Bennion A.E.
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      What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research.
      Hope was associated with regarding what individuals had rather than what they had lost, which was often the case in life-limiting conditions,
      • Campbell-Enns H.J.
      • Woodgate R.L.
      The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.
      ,
      • Nyman S.R.
      • Dibb B.
      • Victor C.R.
      • Gosney M.A.
      Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.
      whereas some remained optimistic by considering potential improvements through treatment.
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      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
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      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      ,
      • Barker A.B.
      • Leighton P.
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      Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
      Hope was also associated with returning to normal daily activities (“I’m looking forward to being able to go back to work again …that is very important”).
      • Salter K.
      • Hellings C.
      • Foley N.
      • Teasell R.
      The experience of living with stroke: a qualitative meta-synthesis.
      Anger and frustration were associated with hopelessness. Experience of symptoms or situations,
      • Froud R.
      • Patterson S.
      • Eldridge S.
      • et al.
      A systematic review and meta-synthesis of the impact of low back pain on people’s lives.
      ,
      • Nichols V.P.
      • Ellard D.R.
      • Griffiths F.E.
      • et al.
      The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.
      ,
      • Kelly M.A.
      • Morse J.Q.
      • Stover A.
      • et al.
      Describing depression: congruence between patient experiences and clinical assessments.
      experiences of poor interactions with family
      • Topcu G.
      • Buchanan H.
      • Aubeeluck A.
      • Garip G.
      Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research.
      ,
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • et al.
      Patients’ perspectives and experiences living with systemic sclerosis: a systematic review and thematic synthesis of qualitative studies.
      or health and social care workers,
      • Fjordside S.
      • Morville A.
      Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
      and uncertainty with regard to diagnosis and future prognosis
      • Griffith G.M.
      • Hutchinson L.
      • Hastings R.P.
      “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies.
      ,
      • Shaw C.
      • McNamara R.
      • Abrams K.
      • et al.
      Systematic review of respite care in the frail elderly.
      were all associated with anger and frustration.
      Individuals experiencing changes such as the inability to undertake their usual activities because of limitations felt guilt and shame.
      • Daker-White G.
      • Donovan J.
      • Campbell R.
      Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis.
      These feelings were also associated with diagnosis (eg, in dementia),
      • O’Rourke H.M.
      • Duggleby W.
      • Fraser K.D.
      • Jerke L.
      Factors that affect quality of life from the perspective of people with dementia: a metasynthesis.
      symptoms (eg, IBS),
      • Garcia-Sanjuan S.
      • Lillo-Crespo M.
      • Sanjuan-Quiles A.
      • Gil-Gonzalez D.
      • Richart-Martinez M.
      Life experiences of people affected by Crohn’s disease and their support networks: scoping review.
      ,
      • Håkanson C.
      Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: an integrative review of qualitative research.
      or failure to meet particular treatment goals (eg, blood sugar levels in diabetes
      • Vanstone M.
      • Rewegan A.
      • Brundisini F.
      • Dejean D.
      • Giacomini M.
      Patient perspectives on quality of life with uncontrolled type 1 diabetes mellitus: A systematic review and qualitative meta-synthesis.