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Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis

  • Reconstructive Oncology
  • Published:
Annals of Surgical Oncology Aims and scope Submit manuscript

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 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 well-developed 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.

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Acknowledgment

The authors thank Drs. Linda Vriend and the information specialists of the Erasmus University Medical Library for their help in the development of the search strategy.

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Authors and Affiliations

  1. Department of Surgery, Patient-Reported Outcome, Value and Experience (PROVE) Center, Harvard Medical School, Brigham and Women’s Hospital, Boston, MA, USA

    Louise Marie Beelen MD, Elena Tsangaris PhD & Andrea L. Pusic MD, MHS

  2. Department of Plastic and Reconstructive Surgery, Erasmus MC University Medical Center, Rotterdam, The Netherlands

    Louise Marie Beelen MD, Anne-Margreet van Dishoeck PhD & Dalibor Vasilic MD, PhD

  3. Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Michelle Coriddi MD & Joseph H. Dayan MD

  4. McMaster University, Hamilton, ON, Canada

    Anne Klassen PhD

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  1. Louise Marie Beelen MD
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  2. Anne-Margreet van Dishoeck PhD
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Correspondence to Louise Marie Beelen MD.

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Disclosures

Anne Klassen and Andrea Pusic are co-developers of the Q-PROM portfolio (including the BREAST-Q). As such, they may recieve royalties when these PROMs are used in for-profit, industry-sponsored clinical trials. Louise Marie Beelen, Anne-Margreet van Dishoeck, Elena Tsangaris, Michelle Coriddi, Joseph H. Dayan, and Dalibor Vasilic have no disclosures to declare.

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Louise Marie Beelen was financially supported by the Erasmus Trustfonds (Erasmus University Rotterdam, The Netherlands).

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Beelen, L.M., van Dishoeck, AM., Tsangaris, E. et al. Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis. Ann Surg Oncol 28, 1656–1668 (2021). https://doi.org/10.1245/s10434-020-09346-0

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