Background Increasingly, women with a strong family history of breast cancer are seeking genetic testing as a starting point to making significant decisions regarding management of their cancer risks. Individuals who are found to be carriers of a BRCA1 or BRCA2 mutation have a substantially elevated risk for breast cancer and are frequently faced with the decision of whether or not to undergo risk reducing mastectomy. Objective In order to provide BRCA1/2 carriers with ongoing decision support for breast cancer risk management, a computer-based interactive decision aid was developed and tested against usual care in a randomized controlled trial. Design Following genetic counseling, 214 female (aged 21-75) BRCA1/2 mutation carriers were randomized to Usual Care (UC; N=114) or Usual Care plus Decision Aid (DA; N=100) arms. UC participants received no further intervention; DA participants were sent the CD-ROM based decision aid to view at home. Main Outcome Measures The authors measured general distress, cancer specific distress and genetic testing specific distress at 1-, 6- and 12-month follow up time points, post-randomization. Results Longitudinal analyses revealed a significant longitudinal impact of the DA on cancer specific distress (B= 5.67, z = 2.81, p = 0.005) which varied over time (DA group by time; B = -2.19, z = -2.47, p = 0.01) and on genetic testing specific distress (B = 5.55, z = 2.46, p = 0.01) which also varied over time (DA group by time; B= -2.46, z = -2.51, p = 0.01). Individuals randomized to UC reported significantly decreased distress in the month following randomization, whereas individuals randomized to the DA maintained their post-disclosure distress over the short-term. By 12-months, the overall decrease in distress between the two groups was similar. Conclusion This report provides new insight into the long-term longitudinal effects of DAs.
BACKGROUND Latinas have lower quality of life than Caucasian cancer survivors but we know little about factors associated with quality of life in this growing population. METHODS Bilingual staff conducted interviews with a national cross-sectional sample of 264 Latina breast cancer survivors. Quality of life was measured using the Functional Assessment of Cancer Therapy-Breast (FACT-B). Regression models evaluated associations between culture, social and medical context and overall quality of life and its subdomains. RESULTS Latina survivors were 1-5 years post-diagnosis and reported a lower mean quality of life score compared to other published reports of non-Latina survivors (M=105; SD=19.4 on the FACT-B). Culturally-based feelings of breast cancer-related stigma and shame were consistently related to lower overall quality of life and lower well-being in each quality of life domain. Social and medical contextual factors were independently related to quality of life; together cultural, social and medical context factors uniquely accounted for 62% of the explained model variance of overall quality of life (Adjusted R2=0.53, P<.001). Similar relationships were seen for quality of life subdomains in which cultural, social and medical contextual variables independently contributed to the overall variance of each final model: physical well-being (Adjusted R2=0.23, P <.001), social well-being (Adjusted R2=0.51, P<.001), emotional well-being (Adjusted R2=0.28, P<.001), functional well-being (Adjusted R2=0.41, P<.001) and additional breast concerns (Adjusted R2=0.40, P<.001). CONCLUSIONS Efforts to improve Latinas’ survivorship experiences should consider cultural, social and medical contextual factors to close existing quality of life gaps between Latinas and other survivors.
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