Compliance and Satisfaction with Long-Term Surveillance in Finnish HNPCC Families

Abstract

Objective: Nation-wide preventative colonoscopic surveillance for mutation carriers in HNPCC families has been organized since the early 1980 by the Finnish HNPCC registry. After characterization of MMR genes, a predisposing mutation has been verified in 111 HNPCC families and over 1500 family members at risk have been tested. The aim of this study was to evaluate the compliance and satisfaction of mutation carriers during life-long colonoscopic surveillance. Materials and Methods: Hospital records of long-term surveillance were obtained for all mutation carriers (n=664). A questionnaire assessing overall experience, willingness to continue the surveillance, painfulness (a three-rank scale), possible interruption of endoscopy and the need for pain relief medication during colonoscopy, was sent to all living mutation carriers (n=587). The questionnaire was returned by 441 persons (75%) of whom 415 persons under colonoscopic surveillance were included in the study and 26 young mutation carriers excluded as they were still pending their first endoscopy. Results: Out of 664 mutation carriers, surveillance had been interrupted in 8 cases (1.2%). Colonoscopies were described as painful by 151 (36%), uncomfortable by 161 (39%) and easy by 103 (25%) patients. Endoscopy was more often rated as painful by females (1.36, SD 0.71) than by males (0.86, SD 0.75), P<0.001. Medication for pain during colonoscopies was administered more often to females (32%) than males (15%), P<0.001. Colonoscopy had to be discontinued because of pain at least once in 10% of the patients. Conclusion: Patient compliance under life-long surveillance was excellent, but painfulness, especially in females, must be seen as a risk for compliance and the quality of endoscopies.