Journal of Cancer Survivorship

, Volume 7, Issue 1, pp 83-92

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

  • Andrea L. PusicAffiliated withMemorial Sloan Kettering Cancer Center Email author 
  • , Yeliz CemalAffiliated withMemorial Sloan Kettering Cancer Center
  • , Claudia AlbornozAffiliated withMemorial Sloan Kettering Cancer Center
  • , Anne KlassenAffiliated withMcMaster University
  • , Stefan CanoAffiliated withClinical Neurology Research Group, Peninsula College of Medicine and Dentistry, Plymouth University
  • , Isabel SulimanoffAffiliated withMemorial Sloan Kettering Cancer Center
  • , Marisol HernandezAffiliated withMemorial Sloan Kettering Cancer Center
  • , Marga MasseyAffiliated withThe Dr. M Massey Practice Group
  • , Peter CordeiroAffiliated withMemorial Sloan Kettering Cancer Center
    • , Monica MorrowAffiliated withMemorial Sloan Kettering Cancer Center
    • , Babak MehraraAffiliated withMemorial Sloan Kettering Cancer Center

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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.


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.


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.


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.


Lymphedema Breast cancer Quality of life