Abstract
Objectives
Decision-aids (DAs) may facilitate shared decision-making for patients and caregivers,
by providing evidence-based information to assist healthcare professionals, patients,
and caregivers in making choices about aspects of care, and/or highlighting decision
factors to discuss with the potential of altering the treatment decision. These decision
factors may not be well integrated in DAs.
Methods
A systematic literature review was conducted in the field of multiple myeloma (MM)
on peer-reviewed publications, extended with a gray literature search. Data on whether
and how patient and caregiver experience elements, other than survival and physical
quality of life, were mentioned as decision factors in the identified MM DAs were
extracted and analyzed qualitatively.
Results
Seventy MM DAs were found and analyzed; 51% of DAs mentioned any patient non-routinely
assessed experience decision factors and only 17% mentioned any caregiver-related
information. One hundred and forty potential decision factors were extracted, deduplicated
and categorized into the following categories: 1) financial, 2) mode of administration
/ transportation issues, 3) personal beliefs and values, 4) emotional and social quality
of life, 5) other medical information, 6) availability of social support, 7) caregiver
burden. None of the DAs presented a comprehensive framework on all seven categories
of decision factors being consider when mapping patient and caregiver experience value
elements in MM.
Conclusions
Based on available DAs, we recommend a set of patient and caregiver experience decision
factors that have the potential to affect treatment choices of patients with MM, which
should be included in DAs, including MM clinical guidelines.
Keywords
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Value in HealthAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Multiple myeloma.N Engl J Med. 2004; 351: 1860-1873
- Clinical predictors of long-term survival in newly diagnosed transplant eligible multiple myeloma — an IMWG Research Project.Blood Cancer J. 2018; 8: 123
- Mutiple myeloma: EHA-ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up.Ann Oncol. 2021; 32: 309-322
- Important considerations for design and implementation of decision aids for shared medical decision making.Perm J. 2020; 24: 19-064
- Management of patients with multiple myeloma beyond the clinical-trial setting: understanding the balance between efficacy, safety and tolerability, and quality of life.Blood Cancer J. 2021; 11: 40
- Shared decision making guideline. National Institute for Health and Care Excellence (NICE).https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/shared-decision-makingDate accessed: October 20, 2021
- Patient, physician and contextual factors are influential in the treatment decision making of older adults newly diagnosed with symptomatic myeloma.Cancer Treat Commun. 2014; 2: 34-47
- Myeloma patients’ self-reported experiences of care and treatment.Cancer Nurs Pract. 2016; 15: 22-26
- What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature.Patient Educ Couns. 2009; 75: 37-52
- The work of managing multiple myeloma and its implications for treatment-related decision making: a qualitative study of patient and caregiver experiences.BMC Cancer. 2021; 21: 793-794
- Evaluating patients’ preferences for multiple myeloma therapy, a discrete-choice-experiment.Psychosoc Med. 2008; 5 (Doc10)
- Analysis of physicians’ perspectives versus patients’ preferences: direct assessment and discrete choice experiments in the therapy of multiple myeloma.Eur J Health Econ. 2011; 12: 193-203
- Individual trade-offs between possible benefits and risks of cancer treatments: results from a stated preference study with patients with multiple myeloma.Oncologist. 2018; 1: 44-51
- Alignment of preferences in the treatment of multiple myeloma — a discrete choice experiment of patient, carer, physician, and nurse preferences.BMC Cancer. 2020; 20: 546
- Myeloma patient value mapping: a discrete choice experiment on myeloma treatment preferences in the UK.Patient Preference Adherence. 2020; 14: 1283-1293
- Caregivers of multiple myeloma survivors.Clin J Oncol Nurs. 2013; 17: 25-32
- National standards for the certification of patient decision. National Quality Forum.https://www.qualityforum.org/Publications/2016/12/National_Standards_for_the_Certification_of_Patient_Decision_Aids.aspxDate accessed: February 25, 2021
- Decision aid. Medical Dictionary.https://medical-dictionary.thefreedictionary.com/decision+aidDate accessed: February 25, 2021
- Treatment of multiple myeloma: ASCO and CCO joint clinical practice guideline.Oncology. 2019; 37: 1228-1263
- The PRISMA 2020 statement: an updated guideline for reporting systematic reviews.BMJ. 2021; 372: n71
- Multiple myeloma: diagnosis and treatment.Am Fam Phys. 2017; 95: 373-383
- American Society of Blood and Marrow Transplantation, European Society of Blood and Marrow Transplantation, Blood and Marrow Transplant Clinical Trials Network, and International Myeloma Working Group Consensus Conference on salvage hematopoietic cell transplantation in patients with relapsed multiple myeloma.Biol Blood Marrow Transplant. 2015; 21: 2039-2051
- Clinical updates regarding multiple myeloma from the 2019 American Society of Hematology Annual Meeting.Clin Lymphoma Myeloma Leuk. 2020; 20: 499-508
- Recent advances in the management of multiple myeloma: clinical impact based on resource-stratification. Consensus statement of the Asian Myeloma Network at the 16th international myeloma workshop.Leuk Lymphoma. 2018; 59: 2305-2317
- Treatment of patients with multiple myeloma who are not eligible for stem cell transplantation: position statement of the myeloma foundation of Australia Medical and Scientific Advisory Group 2015 [published correction appears in Int Med J. 2016;46(12):1459].Int Med J. 2015; 45: 94-105
- UK Myeloma Forum (UKMF) and the British Society for Haematology (BSH). Guidelines for screening and management of late and long-term consequences of myeloma and its treatment.Br J Haematol. 2017; 176: 888-907
- Guidelines for supportive care in multiple myeloma 2011.Br J Haematol. 2011; 154: 76-103
- Guidelines for the diagnosis and management of multiple myeloma 2011.Br J Haematol. 2011; 154: 32-75
- Guidelines on the diagnosis and management of multiple myeloma treatment.Br Med Assoc. 2013; 3: 35
- Mobilization and exercise intervention for patients with multiple myeloma: clinical practice guidelines endorsed by the Canadian Physiotherapy Association.Phys Ther. 2021; 101: pzaa180
- Bortezomib in multiple myeloma: a practice guideline.Clin Oncol. 2014; 26: 110-119
- Lenalidomide in multiple myeloma—a practice guideline.Curr Oncol. 2013; 20: 136-149
- Consensus on surgical management of myeloma bone disease.Orthop Surg. 2016; 8: 263-269
- Clinically applicable, omics-based assessment of survival, side effects, and targets in multiple myeloma. CLIOMMICS.https://www.sys-med.de/en/alliances/cliommics/Date accessed: December 15, 2020
- Chimeric antigen receptor T-cell therapy for multiple myeloma: a consensus statement from the European Myeloma Network.Haematologica. 2019; 104: 2358-2360
- European Myeloma Network guidelines for the management of multiple myeloma-related complications.Haematologica. 2015; 100: 1254-1266
- Patient-centered practice in elderly myeloma patients: an overview and consensus from the European Myeloma Network.Leukemia. 2018; 32: 1697-1712
- Consensus on maintenance therapy in multiple myeloma.Blood. 2012; 119: 3003-3015
- International Myeloma Working Group recommendations for the diagnosis and management of myeloma-related renal impairment.J Clin Oncol. 2016; 34: 1544-1557
- International Myeloma Working Group recommendations for the treatment of multiple myeloma-related bone disease.J Clin Oncol. 2013; 22: 119-130
- International Myeloma Working Group risk stratification model for smoldering multiple myeloma (SMM).Blood Cancer J. 2020; 10: 102
- Management of relapsed multiple myeloma: recommendations of the IMWG.Leukemia. 2015; 30: 1005-1017
- Treatment of multiple myeloma with high-risk cytogenetics: a consensus of the International Myeloma Working Group.Blood. 2016; 127: 2955-2962
- Consensus in the management of multiple myeloma in India at Myeloma State of the Art 2016 Conference.Indian J Hematol Blood Transfus. 2017; 33: 15-21
- SIE, SIES, GITMO evidence-based guidelines on novel agents (thalidomide, bortezomib, and lenalidomide) in the treatment of multiple myeloma.Ann Hematol. 2012; 91: 875-888
- Validation of a personalised medicine tool for multiple myeloma that predicts treatment effectiveness in patients. Cordis.https://cordis.europa.eu/project/id/701143/reportingDate accessed: December 15, 2020
- Clinical practice guideline multiple myeloma. MSAG.https://myeloma.org.au/wp-content/uploads/2019/10/myeloma_clinical_practice_guideline_oct19.pdfDate accessed: December 15, 2020
- Update bortezomib, lenalidomide and dexamethasone (VRd) for initial treatment of multiple myeloma. MSAG.https://myeloma.org.au/wp-content/uploads/2020/09/MSAG_clinical_practice_update_JUL20_final.pdfDate accessed: December 15, 2020
- mSMART Mayo stratification for myeloma and risk-adapted therapy newly diagnosed myeloma. Mayo Clinic.
- Treatment guidelines: multiple myeloma. mSMART.https://www.msmart.org/mm-treatment-guidelinesDate accessed: December 15, 2020
- Utilization of hematopoietic stem cell transplantation for the treatment of multiple myeloma: a mSMART consensus statement.Nature. 2019; 54: 353-367
- Multiple myeloma, version 3.2021, NCCN Clinical Practice Guidelines in Oncology.J Natl Compr Canc Netw. 2020; 8: 1685-1717
- Plasma cell neoplasms (including multiple myeloma) treatment (PDQ®)—health professional version. National Cancer Institute.https://www.cancer.gov/types/myeloma/hp/myeloma-treatment-pdqDate accessed: December 15, 2020
- Consensus Guidelines for the management of patients with multiple myeloma.Singapore Med J. 2017; 58: 55-71
- The Society for Immunotherapy of Cancer consensus statement on immunotherapy for the treatment of multiple myeloma.J Immunother Cancer. 2020; 8e000734
- United Kingdom Myeloma Forum (UKMF) position statement on the use of bendamustine in myeloma.Int J Lab Hematol. 2014; 36: 20-28
- Consensus guidelines for the optimal management of adverse events in newly diagnosed, transplant-ineligible patients receiving melphalan and prednisone in combination with thalidomide (MPT) for the treatment of multiple myeloma.Ann Hematol. 2010; 89: 803-811
- Consensus statement from European experts on the diagnosis, management, and treatment of multiple myeloma: from standard therapy to novel approaches.Leuk Lymphoma. 2010; 51: 1424-1443
- Current status and updated recommendations for diagnosis and treatment of plasma cell myeloma in Switzerland.Swiss Med Wkly. 2015; 145: w14100
- Development of an initial conceptual model of multiple myeloma to support clinical and health economics decision making.MDM Policy Pract. 2019; 42381468318814253
- European perspective on multiple myeloma treatment strategies: update following recent congresses [published correction in Oncologist. 2012;17(7):1005].Oncologist. 2012; 17: 592-606
- Gene signature combinations improve prognostic stratification of multiple myeloma patients.Nature. 2015; 30: 1071-1078
- Handbook of multiple myeloma. Springer International Publishing.https://link.springer.com/book/10.1007/978-3-319-18218-6?noAccess=trueDate accessed: December 15, 2020
- Integrating novel agents into multiple myeloma treatment — current status in Switzerland and treatment recommendations.Swiss Med Wkly. 2010; 140: w13054
- Management of older and frail patients with multiple myeloma in the Portuguese routine clinical practice: deliberations and recommendations from an expert panel of hematologists.J Geriatr Oncol. 2020; 11: 1210-1216
- Methodology of a novel risk stratification algorithm for patients with multiple myeloma in the relapsed setting.Oncol Ther. 2019; 7: 141-157
- Multiple myeloma: 2018 update on diagnosis, risk-stratification, and management.Am J Hematol. 2018; 93: 1091-1110
- Updates to the guidelines for the diagnosis and management of multiple myeloma.Br J Haematol. 2014; 167: 131-133
- Conquer Magazine.https://conquer-magazine.com/issues/2018/vol-4-no-3-june-2018/718-taking-an-active-role-in-multiple-myeloma-treatment-decisionsDate accessed: December 15, 2020
- Questions to ask about multiple myeloma. American Cancer Society.https://www.cancer.org/cancer/multiple-myeloma/detection-diagnosis-staging/talking-with-doctor.htmlDate accessed: December 15, 2020
- Multiple myeloma — a guide for patients. ESMO.https://www.esmo.org/content/download/104831/1843409/1/ESMO-ACF-Multiple-Myeloma-Guide-for-Patients.pdfDate accessed: December 15, 2020
- Patient handbook. International Myeloma Foundation.https://issuu.com/international-myeloma-foundation/docs/phb_en_2018?fr=sNDNhNDE4Nzg3MTEDate accessed: December 15, 2020
- Multiple myeloma caregiver guide. Multiple Myeloma Research Foundation.https://themmrf.org/wp-content/uploads/2020/05/MMRF-Caregiver.pdfDate accessed: December 15, 2020
- Multiple myeloma treatment overview. Multiple Myeloma Research Foundation.https://themmrf.org/wp-content/uploads/2020/05/MMRF-Treatment-Overview.pdfDate accessed: December 15, 2020
- Multiple myeloma: managing a complex blood cancer.Br J Nurs. 2016; 25: S18-S28
- Autologous stem cell transplant: a guide for people with myeloma. Myeloma Australia.https://myeloma.org.au/wp-content/uploads/2020/06/stem_cell_transplant_booklet_apr20_final.pdfDate accessed: December 15, 2020
- Myeloma: a comprehensive guide. Myeloma Australia.https://myeloma.org.au/wp-content/uploads/2019/10/Myeloma-Comprehensive-Guide-2019.pdfDate accessed: December 15, 2020
- Multiple myeloma caregiver handbook. Myeloma Canada.https://www.myelomacanada.ca/pixms/uploads/serve/ckeditor/caregiver_handbook_en_11_2019_final.pdfDate accessed: December 15, 2020
- Multiple myeloma treatment decision-making guide. Myeloma Canada.https://mymyeloma.ca/guide/Date accessed: December 15, 2020
- Multiple myeloma: a patients’ guide. Myeloma Patients Europe.https://www.mpeurope.org/about-myeloma/treatment-of-myeloma/Date accessed: December 15, 2020
- High-dose therapy and autologous stem cell transplantation: treatments and tests infoguide. Myeloma UK.https://www.myeloma.org.uk/documents/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/Date accessed: December 15, 2020
- Infopack for carers of myeloma patients. Myeloma UK.https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-An-Infopack-for-carers-of-myeloma-patients.pdfDate accessed: December 15, 2020
- Infopack for newly diagnosed patients. Myeloma UK.https://www.myeloma.org.uk/wp-content/uploads/2018/05/Myeloma-UK-Infopack-for-newly-diagnosed-myeloma-patients.pdfDate accessed: December 15, 2020
- Guidelines for patients — multiple myeloma. NCCN.https://www.nccn.org/patients/guidelines/content/PDF/myeloma-patient.pdfDate accessed: December 15, 2020
- Plasma Cell Neoplasms (Including Multiple Myeloma) Treatment (PDQ®) — patient version. National Cancer Institute.https://www.cancer.gov/types/myeloma/patient/myeloma-treatment-pdq#_88Date accessed: December 15, 2020
- Myeloma — information for the public. National Institute for Health and Care Excellence (NICE).https://www.nice.org.uk/guidance/ng35/resources/myeloma-pdf-2989205831365Date accessed: December 15, 2020
- Decision aids: assisting patients with multiple myeloma and caregivers with treatment decision making.CJON. 2017; 21: 660-664
- Decision making in oncology: a review of patient decision aids to support patient participation.CA Cancer J Clin. 2008; 5: 293-304
- Decision aids to help older people make health decisions: a systematic review and meta-analysis.BMC Med. 2016; 16: 45
- Decision aids for prostate cancer screening choice: a systematic review and meta-analysis.JAMA Intern Med. 2019; 179: 1072-1082
- Patient decision aids to facilitate shared decision making in obstetrics and gynecology: a systematic review and meta-analysis.Obstet Gynecol. 2020; 135: 444-451
- Patient decision aids in clinical practice for people with diabetes: a scoping review.Diabetol Int. 2020; 11: 344-359
- A review of decision aids for patients considering more than one type of invasive treatment.J Surg Res. 2019; 235: 350-366
- Hard choices, better outcomes: a review of shared decision-making and patient decision aids around dialysis initiation and conservative kidney management.Curr Opin Nephrol Hypertens. 2017; 26: 205-213
Article info
Publication history
Published online: May 22, 2022
Accepted:
April 8,
2022
Identification
Copyright
© 2022 International Society for Pharmacoeconomics and Outcomes Research, Inc. Published by Elsevier Inc.
