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How are patient-reported outcomes and symptoms being measured in adults with relapsed/refractory multiple myeloma? A systematic review

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Abstract

Purpose

Patients with relapsed and/or refractory multiple myeloma (RRMM) are living longer due in part to changing treatment patterns. It is important to understand how changing treatment patterns affect patients’ lives beyond extending survival. Research suggests that direct patient report is the best way to capture information on how patients feel and function in response to their disease and its treatment. Therefore, the purpose of this review is to summarize evidence of patients’ experience collected through patient-reported outcomes (PRO) in RRMM patients, and to explore PRO reporting quality.

Methods

We conducted a systematic search to identify manuscripts reporting PROs in RRMM and summarized available evidence. We assessed PRO reporting quality using the Consolidated Standards of Reporting Trials (CONSORT) PRO Extension checklist.

Results

Our search resulted in 30 manuscripts. Thirteen unique PRO measures were used to assess 18 distinct PRO domains. Pain, fatigue, and emotional function were commonly assessed domains though reporting formats limited our ability to understand prevalence and severity of PRO challenges in RRMM. Evaluation of PRO reporting quality revealed significant reporting deficiencies. Several reporting criteria were included in less than 25% of manuscripts.

Conclusions

Existing evidence provides a limited window for understanding the patient experience of RRMM and is further limited by suboptimal reporting quality. Observational studies are needed to describe prevalence, severity and patterns of PROs in RRMM overtime. Future studies that incorporate PROs would benefit from following existing guidelines to ensure that study evidence and conclusions can be fully assessed by readers, clinicians and policy makers.

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Notes

  1. Multiple myeloma relapse is defined as progressive disease following a response to treatment, and refractory disease is defined as failure to respond to treatment, or progressive disease while on treatment or within 60 days of treatment [17].

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Acknowledgements

The authors would like to acknowledge Amanda Woodward MLIS and Jamie Conklin MLIS for their assistance with this manuscript.

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Authors and Affiliations

  1. Duke University School of Nursing, 307 Trent Drive, Durham, NC, 27710, USA

    Matthew R. LeBlanc & Sophia K. Smith

  2. University of North Carolina Chapel Hill School of Nursing, Campus Box #7460, Carrington Hall, Chapel Hill, NC, 27599, USA

    Rachel Hirschey & Ashley Leak Bryant

  3. Duke University School of Medicine, 8 Searle Center Drive, Durham, NC, 27710, USA

    Thomas W. LeBlanc

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Correspondence to Matthew R. LeBlanc.

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Matthew R. LeBlanc, Rachel Hirschey, and Sophia K. Smith declare that they have no conflicts of interest. Ashley Leak Bryant has received research grants and speaker honoraria from Carevive Systems Inc. Thomas W. LeBlanc has received grants from American Cancer Society, AstraZeneca, Duke University, Jazz Pharmaceuticals, the National Institute of Nursing Research/National Institutes of Health, and Seattle Genetics, has received speaking honoraria from Celgene for non-branded speaking engagements and is a member of a speakers bureau for Agios, has served on advisory boards for AbbVie, Agios, Amgen, Daiichi-Sankyo, Heron, Medtronic, and Otsuka, and is currently or has been within the last 24 months a consultant for Agios, AstraZeneca, Carevive Systems, Flatiron, Helsinn, Otsuka, Pfizer, and Seattle Genetics.

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LeBlanc, M.R., Hirschey, R., Leak Bryant, A. et al. How are patient-reported outcomes and symptoms being measured in adults with relapsed/refractory multiple myeloma? A systematic review. Qual Life Res 29, 1419–1431 (2020). https://doi.org/10.1007/s11136-019-02392-6

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