Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis
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EDITORIAL – RECONSTRUCTIVE ONCOLOGY
Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis Mark V. Schaverien, MB, ChB, MSc, MEd, MD, FRCS(Plast)1, Anaeze C. Offodile II, MD, MPH1, and Christopher Gibbons, PhD2 1
Division of Surgery, Department of Plastic Surgery-Unit 1488, University of Texas MD Anderson Cancer Center, Houston, TX; 2Division of Internal Medicine, Department of Symptom Research, MD Anderson Center for INSPiRED Cancer Care, University of Texas MD Anderson Cancer Center, Houston, TX
The article entitled ‘‘Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis’’ by Dr. Beelen and colleagues reports outcomes of a systematic literature review guided by the PRISMA criteria of all patient-reported outcome measures (PROMs) used to assess health-related quality of life for patients with lymphedema.1 The authors used the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist, a framework for evaluating the methodologic quality of PROM development. They found that none of the lymphedema-specific PROMs met all of the COSMIN quality standards for development and that a major shortcoming in the development of these tools was the lack of substantial open-ended patient input during the development phase. The authors therefore concluded that the currently available instruments are inadequate and may not represent the totality of the patient’s quality of life. With the number of cancer survivors increasing, the treatment of secondary lymphedema is a growing health care need. Lymphedema has a profound negative impact on patients’ quality of life, and PROMs provide insight from patients about their quality of life associated with their condition and how this changes with time and the treatment they have received.2–4 It is therefore essential that the
Ó Society of Surgical Oncology 2020 First Received: 21 October 2020 Accepted: 27 October 2020 M. V. Schaverien, MB, ChB, MSc, MEd, MD, FRCS(Plast) e-mail: [email protected]
development of PROMs involve patients, and as this systematic review highlights, only Upper Limb Lymphedema (ULL)-27 was developed with patient interviews. Six of the tools involved patient surveys during the development phase, which also may provide validity if the surveys were conducted in an open-question format. Although no questionnaire met all of the COSMIN criteria, which were developed in an international expert opinion Delphi study, it is not clear whether this means that a tool is not valid or reliable. For example, no study was scored as adequate or greater on more than 4 of the 11 COSMIN domains. No information was available in any study for cross-cultural validity, and responsiveness was almost never addressed. As demonstrated in this report, a wide variety of PROMs have been used across published studies of lymphedema, indicating a lack of consensus among investigators about the most suitable lymphedemaspecific PROM to use. The lack of a universally accepted and app
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