Psychosocial Adjustment of Familial Polyposis Patients and Participation in a Chemoprevention Trial

Abstract

Psychological and social adjustment was assessed in eighty-nine individuals with familial polyposis, a genetically transmitted disease placing one at high risk for colon cancer. Three illness-related concerns were identified: 1) fear about future health due to the high risk for cancer; 2) guilt about transmitting a genetic disease to one's children; and 3) concern about physical disfigurement resulting from surgery. Well-being scores were generally positive, although somewhat lower than those reported in a community sample. Two factors in particular influenced well-being scores;: those with higher levels of concern about disfigurement reported lower well-being, and those with accurate information about the disease reported higher well-being. Of the eighty-nine individuals included in this study, sixty-one were participating in a clinical trial and twenty-eight had been invited but declined entry. Demographic and psychosocial factors were examined for their relationship to participation. Only three of these variables, length of time since diagnosis, religious affiliation, and geographic location distinguished participants from nonparticipants.