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

Memorial Sloan Kettering Cancer Center, 1275 York Ave, New York, NY, 10065, USA, .
Journal of Cancer Survivorship (Impact Factor: 3.3). 12/2012; 7(1). DOI: 10.1007/s11764-012-0247-5
Source: PubMed


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.

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    • "normalcy and one's sense of self (Thomas-MacLean, Miedema & Tatemichi, 2005b; Meiklejohn, Heesch, Janda, & Hayes, 2013). A recent systematic review of health-related quality of life outcomes for women with breast cancer-related lymphedema showed that the majority of studies reported poorer HRQOL outcomes in function and psychological well-being (Pusic et al., 2013). Another systematic review, addressing both upper and lower limb SLC, found statistically significant differences for social wellbeing (e.g., body image, sexuality) (Fu et al., 2012). "
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