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Quality of life among breast cancer patients with lymphedema: a systematic review of patient-reported outcome instruments and outcomes

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Abstract

Purpose

Lymphedema following breast cancer surgery remains a common and feared treatment complication. Accurate information on health-related quality of life (HRQOL) outcomes among patients with lymphedema is critically needed to inform shared medical decision making and evidence-based practice in oncologic breast surgery. Our systematic review aimed to (1) identify studies describing HRQOL outcomes in breast cancer-related lymphedema (BCRL) patients, (2) assess the quality of these studies, and (3) assess the quality and appropriateness of the patient-reported outcome (PRO) instruments used.

Methods

Using the PRISMA statement, we performed a systematic review including studies describing HRQOL outcomes among BCRL patients. Studies were classified by levels of evidence and fulfillment of the Efficace criteria. PRO instruments were assessed using the COSMIN criteria.

Results

Thirty-nine studies met inclusion criteria, including 8 level I and 14 level II studies. Sixteen of 39 studies were compliant with the Efficace criteria. Seventeen HRQOL instruments were used, two specific to lymphedema patients. Exercise and complex decongestive therapy treatment interventions were associated with improved HRQOL.

Conclusions

High-quality data on HRQOL outcomes is required to inform surgical decisions for breast cancer management and survivors. Of the lymphedema-specific PRO instruments, the Upper Limb Lymphedema 27 (ULL-27) was found to have strong psychometric properties. Future studies should strive to use high-quality condition- specific PRO instruments, follow existing guidelines for HRQOL measurement and to consider economic burdens of BCRL.

Implications for Cancer Survivors

As lymphedema may develop many years after breast cancer surgery, the ULL-27 may offer greater content validity for use in survivorship research.

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The authors declare that they have no conflict of interest

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Authors and Affiliations

  1. Memorial Sloan Kettering Cancer Center, 1275 York Ave, New York, NY, 10065, USA

    Andrea L. Pusic, Yeliz Cemal, Claudia Albornoz, Isabel Sulimanoff, Marisol Hernandez, Peter Cordeiro, Monica Morrow & Babak Mehrara

  2. McMaster University, Hamilton, ON, Canada

    Anne Klassen

  3. Clinical Neurology Research Group, Peninsula College of Medicine and Dentistry, Plymouth University, Plymouth, UK

    Stefan Cano

  4. The Dr. M Massey Practice Group, Roper Office Medical Building Suite #550, Charleston, SC, USA

    Marga Massey

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  1. Andrea L. Pusic
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Correspondence to Andrea L. Pusic.

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Pusic, A.L., Cemal, Y., Albornoz, C. et al. Quality of life among breast cancer patients with lymphedema: a systematic review of patient-reported outcome instruments and outcomes. J Cancer Surviv 7, 83–92 (2013). https://doi.org/10.1007/s11764-012-0247-5

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  • DOI: https://doi.org/10.1007/s11764-012-0247-5

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