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.
"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). "
[Show abstract][Hide abstract] 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
[Show abstract][Hide abstract] ABSTRACT: Purpose:
To determine whether satisfaction and health-related quality of life (HR-QoL) differ between women who do and do not undergo contralateral prophylactic mastectomy (CPM) in the setting of implant reconstruction using the BREAST-Q, a validated patient-reported outcome instrument.
From 2000 to 2007, a total of 3,874 patients with stage 0 to III unilateral breast cancer (BC) had mastectomy; 688 (18 %) pursued CPM within 1 year. Patients who completed the BREAST-Q reconstruction module as part of BREAST-Q validation studies or routine clinical care formed our study cohort. Comparisons were made between CPM and no-CPM patients using univariate analysis and multivariate models (MVA).
Of 294 patients with BREAST-Q data, 112 (38 %) had CPM. Median time from mastectomy to BREAST-Q was 52 months. CPM patients were younger (mean 47 vs. 50 years), more likely to be White (98 vs. 86 %), married (84 vs. 71 %), have a family history of BC (60 vs. 44 %), and to choose silicone implants (67 vs. 48 %). There were no differences in tumor or treatment characteristics between groups at the time of BREAST-Q. Patients with CPM had a higher mean score for Satisfaction with Breasts (64.4 vs. 54.9; p < 0.001) and Satisfaction with Outcome (74.8 vs. 67.7; p = 0.007); other HR-QoL domains did not differ. On MVA, CPM and the absence of lymphedema were significant predictors of Satisfaction with Breasts (CPM p = 0.005, lymphedema p = 0.039). CPM was not associated with improved Satisfaction with Outcome.
This study suggests that in the setting of implant reconstruction, CPM has a positive correlation with patient satisfaction with their breasts, but not with improvements in other HR-QoL domains.
[Show abstract][Hide abstract] ABSTRACT: The genomic era has introduced concepts of "personalized medicine" and "targeted therapy" in the field of oncology. Medicine has become increasingly complex with a plethora of potential dilemmas in diagnosis, treatment, and management. The focus on classical outcomes for clinical decision-making is now increasingly being replaced by patient-reported outcome measures (PROMs). PROMs should increasingly now be in the center of patient-centered decision-making, based on valid, reliable, and clinically useful measures delivered directly by the patient to the caregiver. Surgeons' ability to interpret and apply PROMs and quality of life results must improve by education and further research, and has an unreleased potential to contribute to a better understanding of the patients' well-being. A number of caveats must be addressed before this can be brought to fruition; standardization for valid items; appropriate use of instruments; correct timing of the application; missing data handling, compliance, and respondent drop-outs are but a few issues to be addressed. Based on the apparent lack of use in both research and clinical work, it should call for an educational effort to address this among surgeons caring for patients with cancer.
Frontiers in Oncology 06/2013; 3:157. DOI:10.3389/fonc.2013.00157
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