Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis
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REVIEW ARTICLE – RECONSTRUCTIVE ONCOLOGY
Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis Louise Marie Beelen, MD1,2 , Anne-Margreet van Dishoeck, PhD2, Elena Tsangaris, PhD1, Michelle Coriddi, MD3 , Joseph H. Dayan, MD3 , Andrea L. Pusic, MD, MHS1, Anne Klassen, PhD4 Dalibor Vasilic, MD, PhD2
, and
1
Department of Surgery, Patient-Reported Outcome, Value and Experience (PROVE) Center, Harvard Medical School, Brigham and Women’s Hospital, Boston, MA; 2Department of Plastic and Reconstructive Surgery, Erasmus MC University Medical Center, Rotterdam, The Netherlands; 3Memorial Sloan Kettering Cancer Center, New York, NY; 4 McMaster University, Hamilton, ON, Canada
ABSTRACT Background. Lymphedema is a chronic and debilitating condition that affects many cancer survivors. Patient-reported outcome measures (PROMs) can give valuable insight into the impact of lymphedema on a patient’s quality of life and can play an essential role in treatment decisions. This study aims to (1) identify PROMs used to assess health-related quality of life (HRQoL) in patients with lymphedema; and (2) assess the quality of the lymphedema-specific PROMs. Methods. We performed a systematic search to identify articles on lymphedema, quality of life, and PROMs. An overview was created of all PROMs used to assess HRQoL in patients with lymphedema. The methodological quality of the lymphedema-specific PROMs was assessed using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria. Results. A total of 235 articles met the inclusion criteria, of which 200 described studies using one or more PROMs as an outcome measure in patients with lymphedema. The other 35 studies described the development and/or
Electronic supplementary material The online version of this article (https://doi.org/10.1245/s10434-020-09346-0) contains supplementary material, which is available to authorized users. Ó Society of Surgical Oncology 2020 First Received: 6 August 2020 Accepted: 25 September 2020 L. M. Beelen, MD e-mail: [email protected]
validation of a lymphedema-specific PROM. The COSMIN assessment demonstrated that none of these PROMs met all quality standards for development. Conclusion. The use of PROMs in lymphedema is increasing; however, based on our findings, we cannot fully support the use of any of the existing instruments. A welldeveloped lymphedema-specific PROM, based on patient input, is needed to gain better insight into the impact of this condition, and can be used to measure the effect of possible medical and surgical treatments.
Lymphedema is an increasing health problem that affects up to 250 million people worldwide.1 This condition is manifested by visible swelling, progressively decreasing function, pain, and recurrent skin infections. In Western countries, the majority of patients with lymphedema suffer from secondary lymphedema caused by cancer treatment, such as lymphadenectomy or radiotherapy.2 Secondary lymphedema most frequently affects the upper
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