Using quality of life scores to help determine treatment: is restoring bowel continuity better than an ostomy?

OBJECTIVE: In colorectal surgery, evaluation of heath-related quality of life (HRQL) has been relatively minimal when compared to other medical specialties. Would the performance of such HRQL evaluations change our decision-making in patient care? In familial adenomatous polyposis (FAP), procedures that restore bowel continuity (i.e. Ileorectal anastomosis or ileal pouch anal anastomosis) are routinely preferred to ileostomy because of the perceived, but unproven, better HRQL. This study evaluates FAP patients who underwent prophylactic colectomy with either permanent ileostomy or 'restored bowel continuity' reconstruction. The functional outcomes of both groups are reported, and the HRQL assessments are compared. METHODS: All FAP patients who underwent (procto) colectomy resection with reconstruction, either restored bowel continuity (BC) or permanent ileostomy (OST), between 1980 and 1998 were studied. Functional data were obtained by questionnaire and medical record review. HRQL was assessed by 2 validated instruments - the SF-36 Physical and Mental Health Summary Scales and the SF-36 Health Survey - which measure physical summary (PSF) and mental summary functioning (MSF) as well as eight separate health quality dimensions including health perception (HP), physical (PF) and social functioning (SF), physical (PR) and emotional role limitations (ER), mental health (MH), bodily pain (BP), and energy level (E). RESULTS: Results were obtained in 54 patients; bowel continuity (44), ileostomy (10). Mean patient age was 39 years, mean follow up time was 10.5 years. Mean patient age at operation was 28 years. Functional results for BC included number of bowel movements/day (6.7), leakage (30%), having to wear a pad (11%), perianal skin problems (25%), food avoidance (68%), and inability to distinguish gas (27%). Functional results for OST were routinely excellent. Results of the HRQL surveys reveal no significant differences for BC vs OST (HP: 67 +/- 28 vs 79 +/- 39; PF: 91 +/- 14 vs 90 +/- 17; SF: 86 +/- 23 vs 97 +/- 5; PR: 79 +/- 34 vs 83 +/- 40; ER: 86 +/- 28 vs 88 +/- 27; MH: 77 +/- 19 vs 82 +/- 14; BP: 78 +/- 24 vs 71 +/- 32; E 60 +/- 21 vs 58 +/- 18, respectively). CONCLUSION: Although the perceived quality of life for ileostomy patients is generally worse than the 'restored bowel continuity' group, the measured HRQL is the same for both groups. These results suggest that a permanent ileostomy should be included as a viable and appropriate first line treatment option for FAP patients after resection. This study also suggests that HRQL should play a greater role in the evaluation of care and treatment in colorectal surgery.