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Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis
Louise Marie Beelen1,2, Anne-Margreet van Dishoeck3, Elena Tsangaris4
1Department of Surgery, Patient-Reported Outcome, Value and Experience (PROVE) Center, Harvard Medical School, Brigham and Women's Hospital, Boston, MA, USA. l.beelen@erasmusmc.nl.
Annals of Surgical Oncology
|November 29, 2020
Summary
Patient-reported outcome measures (PROMs) for lymphedema are increasingly used, but existing tools lack sufficient quality. A new, patient-centered PROM is needed to accurately assess lymphedema
Area of Science:
- Oncology
- Rehabilitation Medicine
- Health Outcomes Research
Background:
- Lymphedema significantly impacts cancer survivors' quality of life.
- Patient-reported outcome measures (PROMs) are crucial for understanding lymphedema's effects and guiding treatment.
- Existing PROMs require rigorous evaluation for clinical utility.
Purpose of the Study:
- To identify PROMs used for assessing health-related quality of life (HRQoL) in lymphedema patients.
- To evaluate the methodological quality of lymphedema-specific PROMs.
Main Methods:
- Systematic literature search for studies on lymphedema, quality of life, and PROMs.
- Overview of PROMs applied to lymphedema HRQoL assessment.
- Quality assessment of lymphedema-specific PROMs using COSMIN criteria.
Main Results:
- 235 articles met inclusion criteria; 200 used PROMs, 35 developed/validated lymphedema-specific PROMs.
- COSMIN assessment revealed that no lymphedema-specific PROMs met all development quality standards.
- The quality of existing instruments is insufficient for full clinical support.
Conclusions:
- While PROM use in lymphedema is growing, current instruments are not fully supported due to quality limitations.
- There is a critical need for a well-developed, patient-centered lymphedema-specific PROM.
- A new PROM can improve insights into lymphedema's impact and treatment efficacy.
