Purpose
This study was designed to prospectively examine functional outcome, quality of life, and patients’ personal experiences and adjustment to functional changes during the first year after prophylactic surgery.
Methods
Twenty-one consecutive patients with familial adenomatous polyposis were examined before proctocolectomy (T0), on ileostomy reversal (T1), and 6 (T2) and 12 months (T3) after surgery by means of standardized questionnaires and interviews.
Results
Average physical and mental health declined profoundly after proctocolectomy, followed by a steady improvement after 6 and 12 months. The majority of patients reported the ileostomy period as particularly distressing. After one year, 75 percent of patients reported complete recovery in terms of physical, emotional, and social functioning, whereas one-quarter of patients did not regain their former level of functioning. Despite substantial improvement in pouch functions, functional impairment persists because of frequent bowel movements, resulting mainly in restricted social activities. Ten percent of patients reported impaired sex life, irrespective of gender.
Conclusions
The majority of patients with familial adenomatous polyposis were found to adjust favorably to functional impairment while maintaining satisfactory quality of life. Complementing standardized quality of life measures by patients’ personal experiences may help to identify vulnerable patients in need of psychosocial support.
