[Show abstract][Hide abstract] ABSTRACT: This study used a novel questionnaire to assess quality of life and psychologic adjustment among young adults aged 18 to 35 years with a diagnosis of, or at risk of, developing familial adenomatous polyposis.
Eighty-eight participants (25 males) were recruited through four Australian Hereditary Bowel Cancer Registries.
The average age of participants was 28 years, and the average age of these participants at the time of their last genetic consultation was 23 years. Seventy-one participants (81 percent) had clinical familial adenomatous polyposis, of whom 57 had undergone an ileorectal anastomosis or formation of an ileal pouch with anal anastomosis to prevent colorectal cancer. The ileal-pouch-with-anal-anastomosis group had significantly more adverse outcomes for physical functioning, body image, sexual impact, and negative affect compared with the no-surgery group -- and significantly more negative outcomes for physical functioning and negative affect compared with the ileorectal-anastomosis group. Among the total sample, a small proportion (11.4 percent) had avoidance scores indicative of a significant stress response, and being single was associated with higher levels of avoidance responses about familial adenomatous polyposis (z = -3.19; P = 0.001).
Familial adenomatous polyposis may have a negative impact across a broad range of life domains. Being single is an important risk factor for adverse psychologic outcomes. Delaying surgery, especially ileal pouch with anal anastomosis may minimize the negative impact on physical and psychologic functioning. Referral for psychologic intervention may be required for a small proportion of those affected by familial adenomatous polyposis, and ongoing access to genetic services may help to identify and address the needs of this group.
Full-text · Article · Oct 2007 · Diseases of the Colon & Rectum
[Show abstract][Hide abstract] ABSTRACT: The study assessed views concerning genetic testing and information and support needs among young adults aged 18 to 35 years with a diagnosis of or at risk of developing familial adenomatous polyposis.
A total of 88 participants were recruited through Hereditary Bowel Cancer Registries and assessed using self-administered questionnaires.
The average age of participants was 28 years, and the average age at the time of their last genetic consultation was 23 years. Although 75% would consider prenatal genetic testing, only 21% would consider termination of an affected pregnancy. Sixty-one percent selected "at birth" or "early childhood" as the preferred age for genetic testing of offspring. Participants' highest areas of unmet support needs were with regard to anxiety about their children having familial adenomatous polyposis (39%) and fear of developing cancer (28%).
The parental desire to test children before it is clinically indicated may be a source of distress and create conflict with genetic services. These findings demonstrate that familial adenomatous polyposis may significantly impact young adults, with many having unmet support needs. The length of time since the last genetic consultation and the young age at which these consultations took place suggest that clinics should consider a means of regular follow-up to address these unmet needs.
Full-text · Article · Dec 2006 · Genetics in Medicine