ArticleFamilial cancer2006
Compliance and Satisfaction with Long-Term Surveillance in Finnish HNPCC Families.
Article in Familial cancer, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 45 citations in OpenAlex.
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- Risk Factors Associated with Painful Colonoscopy and Prolonged Cecal Intubation Time in Female Patients.Journal of the anus, rectum and colon · 2023Article
- Colonoscopy quality improvement after initial training: A cross-sectional study of intensive short-term training.Endoscopy international open · 2023Article
- Systemic Barriers to Risk-Reducing Interventions for Hereditary Cancer Syndromes: Implications for Health Care Inequities.JCO precision oncology · 2021Review
- Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study.Hereditary cancer in clinical practice · 2019Article
- Lack of association between screening interval and cancer stage in Lynch syndrome may be accounted for by over-diagnosis; a prospective Lynch syndrome database report.Hereditary cancer in clinical practice · 2019Article
- Uptake of genetic testing by the children of Lynch syndrome variant carriers across three generations.European journal of human genetics : EJHG · 2017Article
- Performance measures for lower gastrointestinal endoscopy: a European Society of Gastrointestinal Endoscopy (ESGE) quality improvement initiative.United European gastroenterology journal · 2017Review
- Colorectal cancer incidence inHereditary cancer in clinical practice · 2017Article
- Screening adherence and cancer risk perceptions in colorectal cancer survivors with Lynch-like syndrome.Clinical genetics · 2016Article
- Patient compliance based on genetic medicine: a literature review.Journal of community genetics · 2014Article
- Hereditary colorectal cancer registries in Canada: report from the Colorectal Cancer Association of Canada consensus meeting; Montreal, Quebec; October 28, 2011.Current oncology (Toronto, Ont.) · 2013Article
- Changes in screening behaviors and attitudes toward screening from pre-test genetic counseling to post-disclosure in Lynch syndrome families.Clinical genetics · 2013Article
- A mobile colonoscopic unit for lynch syndrome: trends in surveillance uptake and patient experiences of screening in a developing country.Journal of genetic counseling · 2013Article
- Causes of death of mutation carriers in Finnish Lynch syndrome families.Familial cancer · 2012Article
- Identification and surveillance of 19 Lynch syndrome families in southern Italy: report of six novel germline mutations and a common founder mutation.Familial cancer · 2011Article
- Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch Syndrome.Familial cancer · 2011Article
- Prevalence and predictors of appropriate colorectal cancer surveillance in Lynch syndrome.The American journal of gastroenterology · 2010Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveNation-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
methodsHospital 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.
resultsOut 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.
conclusionPatient 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.
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