Advertisement

Patient and Caregiver Experience Decision Factors in Treatment Decision Making: Results of a Systematic Literature Review of Multiple Myeloma Decision Aids

      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 access
      One-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 Health
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Kyle R.A.
        • Rajkumar S.V.
        Multiple myeloma.
        N Engl J Med. 2004; 351: 1860-1873
        • Usmani S.Z.
        • Hoering A.
        • Cavo M.
        • et al.
        Clinical predictors of long-term survival in newly diagnosed transplant eligible multiple myeloma — an IMWG Research Project.
        Blood Cancer J. 2018; 8: 123
        • Dimopoulos M.A.
        • Moreau P.
        • Terpos E.
        Mutiple myeloma: EHA-ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up.
        Ann Oncol. 2021; 32: 309-322
        • Koon S.
        Important considerations for design and implementation of decision aids for shared medical decision making.
        Perm J. 2020; 24: 19-064
        • Terpos E.
        • Mikhael J.
        • Hajek R.
        • et al.
        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
      1. Shared decision making guideline. National Institute for Health and Care Excellence (NICE).
        • Tariman J.D.
        • Doorenbos A.
        • Schepp K.G.
        • Becker P.S.
        • Berry D.L.
        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
        • Galinsky J.
        • Richard S.
        • Morris M.
        Myeloma patients’ self-reported experiences of care and treatment.
        Cancer Nurs Pract. 2016; 15: 22-26
        • Edwards M.
        • Davies M.
        • Edwards A.
        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
        • Pritlove C.
        • Jassi M.
        • Burns B.
        • McCurdy A.
        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
        • Mühlbacher A.C.
        • Lincke H.J.
        • Nubling M.
        Evaluating patients’ preferences for multiple myeloma therapy, a discrete-choice-experiment.
        Psychosoc Med. 2008; 5 (Doc10)
        • Mühlbacher A.C.
        • Nubling M.
        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
        • Postmus D.
        • Richards S.
        • Bere N.
        • et al.
        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
        • Fifer S.J.
        • Ho K.A.
        • Lybrand S.
        • Axford L.J.
        • Roach S.
        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
        • Fifer S.
        • Galinsky J.
        • Richard S.
        Myeloma patient value mapping: a discrete choice experiment on myeloma treatment preferences in the UK.
        Patient Preference Adherence. 2020; 14: 1283-1293
        • Kurtin S.
        • Lilleby K.
        • Spong J.
        Caregivers of multiple myeloma survivors.
        Clin J Oncol Nurs. 2013; 17: 25-32
      2. National standards for the certification of patient decision. National Quality Forum.
      3. Decision aid. Medical Dictionary.
        • Mikhael J.
        • Ismaila N.
        • Cheung M.C.
        • et al.
        Treatment of multiple myeloma: ASCO and CCO joint clinical practice guideline.
        Oncology. 2019; 37: 1228-1263
        • Page M.J.
        • McKenzie J.E.
        • Bossuyt P.M.
        • et al.
        The PRISMA 2020 statement: an updated guideline for reporting systematic reviews.
        BMJ. 2021; 372: n71
        • Michels T.C.
        • Petersen K.E.
        Multiple myeloma: diagnosis and treatment.
        Am Fam Phys. 2017; 95: 373-383
        • Giralt S.
        • Garderet L.
        • Durie B.
        • et al.
        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
        • Terpos E.
        • Ntanasis-Stathopoulos I.
        • International Myeloma Society
        Clinical updates regarding multiple myeloma from the 2019 American Society of Hematology Annual Meeting.
        Clin Lymphoma Myeloma Leuk. 2020; 20: 499-508
        • Tan D.
        • Lee J.H.
        • Chen W.
        • et al.
        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
        • Quach H.
        • Joshua D.
        • Ho J.
        • et al.
        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
        • Snowden J.A.
        • Greenfield D.M.
        • Bird J.M.
        • et al.
        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
        • Snowden J.A.
        • Ahmedzai S.H.
        • Ashcroft J.
        • et al.
        Guidelines for supportive care in multiple myeloma 2011.
        Br J Haematol. 2011; 154: 76-103
        • Bird J.M.
        • Owen R.G.
        • D'Sa S.
        • et al.
        Guidelines for the diagnosis and management of multiple myeloma 2011.
        Br J Haematol. 2011; 154: 32-75
        • Hungria V.T.M.
        • Crusoe E.Q.
        • Quero A.A.
        • Sampaio M.
        • Maiolino A.
        • Bernardo W.M.
        Guidelines on the diagnosis and management of multiple myeloma treatment.
        Br Med Assoc. 2013; 3: 35
        • Jeevanantham D.
        • Rajendran V.
        • McGillis Z.
        • Tremblay L.
        • Larivière C.
        • Knight A.
        Mobilization and exercise intervention for patients with multiple myeloma: clinical practice guidelines endorsed by the Canadian Physiotherapy Association.
        Phys Ther. 2021; 101: pzaa180
        • Kouroukis C.T.
        • Baldassarre F.G.
        • Haynes A.E.
        • et al.
        Bortezomib in multiple myeloma: a practice guideline.
        Clin Oncol. 2014; 26: 110-119
        • Chen C.
        • Baldassarre F.
        • Kanjeekal S.
        • Herst J.
        • Hicks L.
        • Cheung M.
        Lenalidomide in multiple myeloma—a practice guideline.
        Curr Oncol. 2013; 20: 136-149
        • Surgeon's Committee of the Chinese Myeloma Working Group of the International Myeloma Foundation
        Consensus on surgical management of myeloma bone disease.
        Orthop Surg. 2016; 8: 263-269
      4. 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
        • Moreau P.
        • Sonneveld P.
        • Boccadoro M.
        • et al.
        Chimeric antigen receptor T-cell therapy for multiple myeloma: a consensus statement from the European Myeloma Network.
        Haematologica. 2019; 104: 2358-2360
        • Terpos E.
        • Kleber M.
        • Engelhardt M.
        • et al.
        European Myeloma Network guidelines for the management of multiple myeloma-related complications.
        Haematologica. 2015; 100: 1254-1266
        • Larocca S.M.
        • Dold S.
        • Zweegman S.
        • et al.
        Patient-centered practice in elderly myeloma patients: an overview and consensus from the European Myeloma Network.
        Leukemia. 2018; 32: 1697-1712
        • Ludwig H.
        • Durie B.G.M.
        • McCarthy P.
        • et al.
        Consensus on maintenance therapy in multiple myeloma.
        Blood. 2012; 119: 3003-3015
        • Dimopoulos M.A.
        • Sonneveld P.
        • Leung N.
        • et al.
        International Myeloma Working Group recommendations for the diagnosis and management of myeloma-related renal impairment.
        J Clin Oncol. 2016; 34: 1544-1557
        • Terpos E.
        • Morgan G.
        • Dimopoulos M.A.
        • et al.
        International Myeloma Working Group recommendations for the treatment of multiple myeloma-related bone disease.
        J Clin Oncol. 2013; 22: 119-130
        • Mateos M.V.
        • Kumar S.
        • Dimopoulos M.A.
        • et al.
        International Myeloma Working Group risk stratification model for smoldering multiple myeloma (SMM).
        Blood Cancer J. 2020; 10: 102
        • Laubach J.
        • Garderet L.
        • Mahindra A.
        • et al.
        Management of relapsed multiple myeloma: recommendations of the IMWG.
        Leukemia. 2015; 30: 1005-1017
        • Sonneveld P.
        • Avet-Loiseau H.
        • Lonial S.
        • et al.
        Treatment of multiple myeloma with high-risk cytogenetics: a consensus of the International Myeloma Working Group.
        Blood. 2016; 127: 2955-2962
        • Yanamandra U.
        • Khattry N.
        • Kumar S.
        • et al.
        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
        • Barosi G.
        • Merlini G.
        • Billio A.
        • et al.
        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
      5. Validation of a personalised medicine tool for multiple myeloma that predicts treatment effectiveness in patients. Cordis.
      6. Clinical practice guideline multiple myeloma. MSAG.
      7. Update bortezomib, lenalidomide and dexamethasone (VRd) for initial treatment of multiple myeloma. MSAG.
      8. mSMART Mayo stratification for myeloma and risk-adapted therapy newly diagnosed myeloma. Mayo Clinic.
      9. Treatment guidelines: multiple myeloma. mSMART.
        https://www.msmart.org/mm-treatment-guidelines
        Date accessed: December 15, 2020
        • Gonsalves W.I.
        • Buadi F.K.
        • Ailawadhi S.
        • et al.
        Utilization of hematopoietic stem cell transplantation for the treatment of multiple myeloma: a mSMART consensus statement.
        Nature. 2019; 54: 353-367
        • Kumar S.K.
        • Callander N.S.
        • Adekola K.
        • et al.
        Multiple myeloma, version 3.2021, NCCN Clinical Practice Guidelines in Oncology.
        J Natl Compr Canc Netw. 2020; 8: 1685-1717
      10. Plasma cell neoplasms (including multiple myeloma) treatment (PDQ®)—health professional version. National Cancer Institute.
        • de Mel S.
        • Chen Y.
        • Gopalakrishnan S.K.
        • et al.
        Consensus Guidelines for the management of patients with multiple myeloma.
        Singapore Med J. 2017; 58: 55-71
        • Shah N.
        • Aiello J.
        • Avigan D.E.
        • et al.
        The Society for Immunotherapy of Cancer consensus statement on immunotherapy for the treatment of multiple myeloma.
        J Immunother Cancer. 2020; 8e000734
        • Pratt G.
        • Bowcock S.
        • Lai M.
        • et al.
        United Kingdom Myeloma Forum (UKMF) position statement on the use of bendamustine in myeloma.
        Int J Lab Hematol. 2014; 36: 20-28
        • Palumbo A.
        • Davies F.
        • Kropff M.
        • et al.
        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
        • Engelhardt M.
        • Kleber M.
        • Udi J.
        • et al.
        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
        • Samaras P.
        • Bargetzi M.
        • Betticher D.C.
        • et al.
        Current status and updated recommendations for diagnosis and treatment of plasma cell myeloma in Switzerland.
        Swiss Med Wkly. 2015; 145: w14100
        • Gonzalez-McQuire S.
        • Dimopoulos M.A.
        • Weisel K.
        • et al.
        Development of an initial conceptual model of multiple myeloma to support clinical and health economics decision making.
        MDM Policy Pract. 2019; 42381468318814253
        • Ludwig H.
        • Avet-Loiseau H.
        • Bladé J.
        • Boccadoro M.
        • et al.
        European perspective on multiple myeloma treatment strategies: update following recent congresses [published correction in Oncologist. 2012;17(7):1005].
        Oncologist. 2012; 17: 592-606
        • Chng W.J.
        • Chung T.H.
        • Kumar S.
        • et al.
        Gene signature combinations improve prognostic stratification of multiple myeloma patients.
        Nature. 2015; 30: 1071-1078
        • Mohty M.
        • Rousseau J.L.
        Handbook of multiple myeloma. Springer International Publishing.
        • Taverna C.
        • Bargetzi M.
        • Betticher D.
        • et al.
        Integrating novel agents into multiple myeloma treatment — current status in Switzerland and treatment recommendations.
        Swiss Med Wkly. 2010; 140: w13054
        • João C.
        • Geraldes C.
        • Neves M.
        • Mariz M.
        • Trigo F.
        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
        • Bouwmeester W.
        • Briggs A.
        • van Hout B.
        • et al.
        Methodology of a novel risk stratification algorithm for patients with multiple myeloma in the relapsed setting.
        Oncol Ther. 2019; 7: 141-157
        • Rajkumar S.V.
        Multiple myeloma: 2018 update on diagnosis, risk-stratification, and management.
        Am J Hematol. 2018; 93: 1091-1110
        • Pratt G.
        • Jenner M.
        • Owen R.
        • et al.
        Updates to the guidelines for the diagnosis and management of multiple myeloma.
        Br J Haematol. 2014; 167: 131-133
        • Academy of Oncology Nurse & Patient Navigators: taking an active role in multiple myeloma treatment decisions
        Conquer Magazine.
      11. Questions to ask about multiple myeloma. American Cancer Society.
      12. Multiple myeloma — a guide for patients. ESMO.
      13. Patient handbook. International Myeloma Foundation.
      14. Multiple myeloma caregiver guide. Multiple Myeloma Research Foundation.
      15. Multiple myeloma treatment overview. Multiple Myeloma Research Foundation.
        • Dowling M.
        • Kelly M.
        • Meenaghan T.
        Multiple myeloma: managing a complex blood cancer.
        Br J Nurs. 2016; 25: S18-S28
      16. Autologous stem cell transplant: a guide for people with myeloma. Myeloma Australia.
      17. Myeloma: a comprehensive guide. Myeloma Australia.
      18. Multiple myeloma caregiver handbook. Myeloma Canada.
      19. Multiple myeloma treatment decision-making guide. Myeloma Canada.
        https://mymyeloma.ca/guide/
        Date accessed: December 15, 2020
      20. Multiple myeloma: a patients’ guide. Myeloma Patients Europe.
      21. High-dose therapy and autologous stem cell transplantation: treatments and tests infoguide. Myeloma UK.
      22. Infopack for carers of myeloma patients. Myeloma UK.
      23. Infopack for newly diagnosed patients. Myeloma UK.
      24. Guidelines for patients — multiple myeloma. NCCN.
      25. Plasma Cell Neoplasms (Including Multiple Myeloma) Treatment (PDQ®) — patient version. National Cancer Institute.
      26. Myeloma — information for the public. National Institute for Health and Care Excellence (NICE).
        • Kojovic B.
        • Tariman J.D.
        Decision aids: assisting patients with multiple myeloma and caregivers with treatment decision making.
        CJON. 2017; 21: 660-664
        • Stacey D.
        • Samant R.
        • Bennett C.
        Decision making in oncology: a review of patient decision aids to support patient participation.
        CA Cancer J Clin. 2008; 5: 293-304
        • van Weert J.C.
        • van Munster B.C.
        • Sanders R.
        • Spijker R.
        • Hooft L.
        • Jansen J.
        Decision aids to help older people make health decisions: a systematic review and meta-analysis.
        BMC Med. 2016; 16: 45
        • Riikonen J.M.
        • Guyatt G.H.
        • Kilpeläinen T.P.
        • et al.
        Decision aids for prostate cancer screening choice: a systematic review and meta-analysis.
        JAMA Intern Med. 2019; 179: 1072-1082
        • Poprzeczny A.J.
        • Stocking K.
        • Showell M.
        • Duffy J.M.N.
        Patient decision aids to facilitate shared decision making in obstetrics and gynecology: a systematic review and meta-analysis.
        Obstet Gynecol. 2020; 135: 444-451
        • Cornelius J.
        • Doran F.
        • Jefford E.
        • Salehi N.
        Patient decision aids in clinical practice for people with diabetes: a scoping review.
        Diabetol Int. 2020; 11: 344-359
        • Leinweber K.A.
        • Columbo J.A.
        • Kang R.
        • Trooboff S.W.
        • Goodney P.P.
        A review of decision aids for patients considering more than one type of invasive treatment.
        J Surg Res. 2019; 235: 350-366
        • Davis J.L.
        • Davison S.N.
        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