Thirty-year compliance with a surveillance program for patients with familial adenomatous polyposis.
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Familial adenomatous polyposis is an inherited genetic disorder responsible for multiple anomalies. Lifelong surveillance protocols are essential to detect and prevent adverse developments. However, limited data exist regarding the long-term feasibility of such programs. This study aims to evaluate the compliance with a surveillance program for patients with familial adenomatous polyposis. The study collated data from all patients who underwent surgery between January 1981 and December 1993, excluding non-French residents. Recorded characteristics included medical history, follow-up results, the indications for operations or other procedures, outcomes of these interventions, and patient status at the end of the follow-up period. One hundred and sixty-four patients were enrolled, comprising 86 females (52.4%). The median age at the time of colorectal resection was 29.6 years [10-67]. Thirty-six (22.0%) were diagnosed with cancer at the time of their surgery. Fifty-eight patients (35.3%) passed away at a median age of 52 years [18-95]. During the follow-up period, 47 patients developed duodenal or reservoir adenomas requiring invasive procedures, or desmoid tumors necessitating treatment. After a possible 30 years of follow-up, 49 survivors (46.2%) are still under observation, while 57 (53.8%) have been lost to follow-up. After 30 years of follow-up, the survival rate was 74.2% for patients who remained under observation, but only 58.2% for those lost to follow-up. Long-term follow-up of patients with familial adenomatous polyposis is associated with a high rate of loss to follow-up. However, those who remain under observation maintain an excellent prognosis. Understanding the reasons for loss to follow-up is challenging but may help in reducing this high attrition rate.