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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
Correspondence: Clara Mukuria, School of Health and Related Research (ScHARR), University of Sheffield, Regent Court, 30 Regent St, Sheffield, England, UK S1 4DA.
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.
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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.
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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.
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
The Extending the QALY project aimed to address this problem by developing a broader multidimensional measure of benefit within an extrawelfarist theoretical tradition.
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.
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.
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
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
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.
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.
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
Outcomes
QoL 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 measures
Patients – 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.
Methods
Qualitative reviews focused on outcomes and populations. Primary qualitative studies focused on the development of generic measures used in the populations of interest.
Language
English
Countries
A 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.
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
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.
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
“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.
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
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.
Diabetes, urogenital, blood, and endocrine diseases: Diabetes
To 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.
NR
QL
2004-2014
Y
29
The United Kingdom, Denmark, The Netherlands, Sweden, Norway, Switzerland, Germany, Belgium
Mental health and substance abuse disorders: Autistic spectrum conditions
To 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?
To 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.
To 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.
Y
QL
1991-2011
N
24
United Kingdom, United States, Sweden, The Netherlands, Australia, Canada, New Zealand
To inform the debate about the coverage of back pain outcome measure core sets, and to suggest areas worthy of exploration within healthcare consultations.
Y
QL
1991-2010
Y
49
United States, Sweden, Israel, New Zealand, Australia, Canada, The Netherlands, Iran, South Africa
To summarize black and minority ethnic patients and partners' experiences of prostate cancer by examining the findings of existing qualitative studies.
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
To review perceived emotional Wellbeing in older people with visual impairment and perceived factors that inhibit/facilitate psychosocial adjustment to vision loss.
Y
QL
1st Jan 1980 - 31st Dec 2010
Y
17
United States, The Netherlands, Sweden, United Kingdom, Australia
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
To synthesize the findings of published qualitative research that has focused on the spousal caregiver’s experience of living with a partner diagnosed of dementia.
To 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.
Y
QL
NR
Y
15
Australia, Canada, Chile, Denmark, Iran, Norway, Sweden, United Kingdom, United States
To 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.
“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.
To 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.
Aims to integrate current qualitative international findings and enhance the experiences of and perspectives on pain and pain management in the context of nursing homes.
Y
QL
Not stated
Y
6
United States, Norway, Iceland, United Kingdom, Australia
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
To 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.
Y
QL
Up to May 2014
Y
12
Sweden, Denmark, Canada, Australia, Norway, United Kingdom,
To 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 Danish
QL+QT
Content analysis and narrative summary.
NA (Studies on the interpretation of EQ-5D using official translations were relevant)
To explore patients’ experience of completing 3 outcome questionnaires – EQ-5D, COOP-WONCA charts and Measure Yourself Medical Outcome Profile (MYMOP).
English
QL
In-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 treatment
To elicit concepts and develop items for a capability Wellbeing measure for the general adult population for use in economic evaluation.
English
QL
Interviews. 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 areas
To 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.
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.
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.
English
QL +QT
Interviews with a subsample of the interviewees who completed a questionnaire
Patients 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 score
To 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 languages
QL+QT
Key informant interviews and focus groups
Prototypical 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 caregivers
45 + 2 focus groups for the United Kingdom
Cambodia, Canada, Greece, India, Japan, Luxemburg, The Netherlands, Nigeria, Romania, Spain, Tunisia, Turkey, United Kingdom
To 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 languages
QL+QT
Discussion groups.
Individuals demographically typical of the population
6-8 in each field center
Thailand, United Kingdom, India, Australia, Russia, Croatia, The Netherlands, Panama, United States
(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 languages
QL+QT
Focus groups. Structured analysis.
Inpatient and outpatient users, the general population including informal carers, health personnel
6-8 in each focus group; minimum of 2 focus groups for each target group
Thailand, United Kingdom, India, Australia, Russia, Croatia, The Netherlands, Panama, United States
To 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.
English
QL+QT
Cognitive debriefing interviews
Decision-makers used to identify important outcomes in social care
To determine the important attributes of quality of life for older people.
English
QL
Interviews. Framework analysis
Purposive sampling to include the range of personal characteristics (sex, age, health, household composition, occupation)
40
United 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
Book Review: Asking Questions: The Definitive Guide to Questionnaire Design for Market Research, Political Polls, and Social and Health Questionnaires.
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
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
). 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,
“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.
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
“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.
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
“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.
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
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.
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.
“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.
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
). The most common countries were the United Kingdom, United States, Canada, and other European countries primarily focusing on English language studies (Table 2
“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.
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
Qualitative studies of patients’ perceptions of loss of teeth, the edentulous state and prosthetic rehabilitation: a systematic review with meta-synthesis.
Coping together with hearing loss: a qualitative meta-synthesis of the psychosocial experiences of people with hearing loss and their communication partners.
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
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.
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
“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.
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”).
Factors influencing older people’s experiences of participation in autonomous decisions concerning their daily care in their own homes: a review of the literature.
“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.
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