Around diagnosis, many young patients with breast cancer have low levels of knowledge about fertility issues. Further, low knowledge is associated with increased decisional conflict, which is likely to undermine the quality of decision making. These findings suggest that targeted and timely fertility information may reduce decisional conflict and increase informed choice. Neither relationship status nor firm plans regarding future children reliably predict desire to pursue fertility preservation.
Few studies have examined the cognitive profile of young children with NF1. In this study, 26 children with NF1 (M(age) = 5 years 3 months) were compared with 21 peer comparisons (M(age) = 4 years 8 months) and available normative data on neuropsychological measures. Children with NF1 demonstrated the characteristic downward shift in IQ, poor visuospatial constructional skills, and inattention. Working memory deficits were common in parental ratings. These findings suggest that at least some of the cognitive deficits associated with NF1 can be identified in the preschool-age group, highlighting the need for early assessment and intervention.
The aim of this study was to explore in detail the psychosocial impact of either having familial adenomatous polyposis (FAP) or being at risk for FAP amongst young adults. In-depth interviews were conducted with eleven individuals aged 18-35 with a clinical or genetic diagnosis of, or at risk of developing FAP. While being at risk did not seem to have a major psychosocial impact upon clinically unaffected participants, clinically affected individuals discussed a number of major stressors including issues in relation to changes in body image and physical functioning as a result of surgery, concerns about discussing FAP with new partners, difficulties in relation to childbearing decision-making, and impact on employment. Genetic counseling was described as being highly effective in providing support, but most participants were not aware of any other support services. Providing longer-term support through ongoing genetic counseling appears necessary to adequately address the ongoing challenges faced by young adults who are dealing with FAP.
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