Quality of life among breast cancer patients with lymphedema: a systematic review of patient-reported outcome instruments and outcomes.
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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ABSTRACT: Life with a disability is often riddled with paradoxes, one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Our article draws attention to this paradox among people who live with secondary lymphedema after cancer (SLC). SLC is a relatively unfamiliar chronic condition within medical and lay discourses of cancer, which proves challenging for the many cancer survivors who are in search of information and understanding. Thirteen men and women with SLC were recruited from two research sites (Fredericton, NB, and Ottawa, ON, Canada) to participate in semi-structured interviews about the physical and psychosocial aspects of SLC. Using a methodology of interpretive description, our analysis of participant interviews reveals the complex ways in which men and women felt both visible and invisible within various contexts. We discuss three majors themes: (in)visibility and appearance related to material losses; (in)visibility and action connected to visible losses in function, as well as invisible struggles to care for oneself; and the loss of present and future well-being, as SLC renders some limitations visible while potentially obscuring a hopeful future indefinitely. Our research indicates that timely diagnosis of SLC would be an immediate first step in recognizing the physical and emotional dimensions of the condition. To accomplish this, increased awareness is needed. To enhance quality of life for those living with SLC, the development of new resources and psychosocial supports is also required.International Journal of Qualitative Studies on Health and Well-Being 08/2014; 9:24354. DOI:10.3402/qhw.v9.24354 · 0.93 Impact Factor
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ABSTRACT: Patient-reported outcome measures (PROMs) are increasingly used in both research and clinical health settings. With the recent development of United States Food and Drug Administration guidance on PROMs, more attention is being devoted to their role and importance in health care. Several methodological challenges in the development, validation and implementation of PROMs must be resolved to ensure their appropriate utilization and interpretation. The present review discusses recent developments and updates in PROMs, with specific focus on the area of inflammatory bowel disease.
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ABSTRACT: Lymphedema is a common side effect of breast cancer treatment that may negatively impact on a woman's physical and psychological well-being. This study aimed to understand the impact of breast cancer-related lymphedema on women's sexual functioning, and to identify key concerns of these women regarding sexual issues. Purposive sampling recruited 17 women aged 38-67 years with mild to severe lymphedema. Telephone interviews concerning sexual issues were transcribed verbatim and thematic analysis undertaken. Women perceived sexual concerns arising from lymphedema to exacerbate concerns arising from breast cancer. Four interrelated factors determined the extent of lymphedema's sexual impact: (a) swelling severity and location, (b) needing to wear a compression garment, (c) body image concerns raised by lymphedema and breast cancer treatment, and (d) their sexual partner's acceptance and supportiveness. In particular, a supportive partner was instrumental in assisting women to overcome sexual issues caused by severe swelling and/or body image concerns. Few women reported being asked about sexual issues by any health professional, and most women indicated that they were unwilling to discuss sexual concerns with health professionals, friends, or family. Lymphedema had the potential to accentuate sexual issues caused by breast cancer, but most women were reluctant to discuss issues with anyone other than their partner. These findings are relevant to health professionals designing breast cancer psychosexual interventions and future research addressing lymphedema-specific sexual concerns.Supportive Care in Cancer 03/2015; DOI:10.1007/s00520-015-2709-6 · 2.50 Impact Factor