BackgroundLynch syndrome is a hereditary cancer with confirmed carriers at high risk for colorectal (CRC) and extracolonic cancers. The purpose of the current study was to develop a greater understanding of the factors influencing decisions about disease management post-genetic testing.MethodsThe study used a grounded theory approach to data collection and analysis as part of a multiphase project examining the psychosocial and behavioral impact of predictive DNA testing for Lynch syndrome. Individual and small group interviews were conducted with individuals from 10 families with the MSH2 intron 5 splice site mutation or exon 8 deletion. The data from confirmed carriers (n = 23) were subjected to re-analysis to identify key barriers to and/or facilitators of screening and disease management.ResultsThematic analysis identified personal, health care provider and health care system factors as dominant barriers to and/or facilitators of managing Lynch syndrome. Person-centered factors reflect risk perceptions and decision-making, and enduring screening/disease management. The perceived knowledge and clinical management skills of health care providers also influenced participation in recommended protocols. The health care system barriers/facilitators are defined in terms of continuity of care and coordination of services among providers.ConclusionsIndividuals with Lynch syndrome often encounter multiple barriers to and facilitators of disease management that go beyond the individual to the provider and health care system levels. The current organization and implementation of health care services are inadequate. A coordinated system of local services capable of providing integrated, efficient health care and follow-up, populated by providers with knowledge of hereditary cancer, is necessary to maintain optimal health.
BackgroundTo study and update the provincial incidence of type 1 diabetes mellitus (T1DM) in Newfoundland and Labrador (NL), a province of Canada with a very high incidence previously reported in 2006, and one of the highest incidences reported worldwide. This is a retrospective time trend study of the incidence of T1DM, in children aged 0–14 years from 1987–2010 inclusive.FindingsOver the study period 931 children aged 0–14 years were diagnosed with T1DM. The incidence of T1DM in this population over the period 1987 – 2010 inclusive was 37.7 per 100,000 per year (95% CI 35. 3, 40.2)The incidence from 2007–2010 was 49.9 per 100,000 per year (95% CI 42.2, 57.6). The incidence over this 24 year period increased by a factor of 1.03 per 100,000 per year.ConclusionNL has one of the highest incidences of T1DM reported worldwide. Potential reasons for the very high incidence could be related to the unique genetic background of the population, northern latitude and vitamin D insufficiency, low breastfeeding rates, and high rates of cesarean section.
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