title: Quality of life among breast cancer patients with lymphedema: a systematic review of patient-reported outcome instruments and outcomes.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  As lymphedema may develop many years after breast cancer surgery, the ULL-27 may offer greater content validity for use in survivorship research.
authors.affiliation: Memorial Sloan Kettering Cancer Center, New York, NY 10065, USA. pusica@mskcc.org
authors.forename: Andrea L
authors.initials: AL
authors.lastname: Pusic
authors.forename: Yeliz
authors.initials: Y
authors.lastname: Cemal
authors.forename: Claudia
authors.initials: C
authors.lastname: Albornoz
authors.forename: Anne
authors.initials: A
authors.lastname: Klassen
authors.forename: Stefan
authors.initials: S
authors.lastname: Cano
authors.forename: Isabel
authors.initials: I
authors.lastname: Sulimanoff
authors.forename: Marisol
authors.initials: M
authors.lastname: Hernandez
authors.forename: Marga
authors.initials: M
authors.lastname: Massey
authors.forename: Peter
authors.initials: P
authors.lastname: Cordeiro
authors.forename: Monica
authors.initials: M
authors.lastname: Morrow
authors.forename: Babak
authors.initials: B
authors.lastname: Mehrara
mesh_terms: D001943:Breast Neoplasms / Q000150:complications* / Q000523:psychology / Q000601:surgery; D005260:Female; D006304:Health Status; D006801:Humans; D008209:Lymphedema / Q000209:etiology* / Q000517:prevention & control / Q000523:psychology; D008408:Mastectomy / Q000009:adverse effects*; D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D057566:Self Report; D017741:Survivors / Q000523:psychology*