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Leiden, Netherlands

Hennink S.D.,Leiden University | Hofland N.,Leiden University | Gopie J.P.,Leiden University | Van Der Kaa C.,Dutch Lynch Syndrome Registry | And 19 more authors.
Familial Cancer | Year: 2013

Lynch syndrome (LS), one of the most frequent forms of hereditary colorectal cancer (CRC), is caused by a defect in one of the mismatch repair (MMR) genes. Carriers of MMR defects have a strongly increased risk of developing CRC and endometrial cancer. Over the last few years, value-based healthcare has been introduced as an approach to the cost-effective delivery of measurable patient value over complete cycles of care. This requires all involved stakeholders to formulate and validate patient value for Lynch syndrome, as well as to identify targets and associated costs. The aim of this study was to develop a value-based care model for Lynch syndrome that can determine patient value and associated costs, and to design a coordinated care pathway from existing guidelines. All specialists in our hospital involved in the management of LS patients evaluated the care delivered to these patients at their department and formulated outcome measures relevant to patient value. Patients were then invited to complete a questionnaire that assessed the importance of these measures on a scale of 1-10. Six high-value outcomes were identified: (1) prevention of cancer or detection of early stage cancer (2) rapid results from MMR gene mutation testing (3) rapid investigation of the colon and uterus (4) no/little pain during colonoscopy and gynaecologic examination/ biopsy (5) the offer of psychological help and (6) registration with the Dutch Lynch syndrome registry. A total of 38 (59 %) out of 62 patients completed the questionnaire. The relevance of all outcomes was confirmed by the patients and mean scores varied from 7.2 to 9.9. Patients underscored the relevance of both proper patient education and the efficiency of surveillance during their care cycle. Value-based care delivery for Lynch syndrome includes the implementation of six parameters related to prevention and early detection of cancer, a short cycle time and registration to ensure continuation of care. Estimated costs are € 3320 for the first cycle of care (€ 3550 including gynaecologic surveillance) and approximately 720 per subsequent annual cycle (€ 950 including gynaecologic surveillance). improves when available finances are redistributed amongst the various services of the total care [4]. Value is often revealed over time and is manifested in long-term outcomes such as the prevention of CRC by ongoing surveillance colonoscopies in Lynch syndrome. The only effective way to accurately measure value is to track patient outcomes longitudinally. The aim of the present study was to develop a similarly comprehensive approach for patients suspect for LS in our hospital. The first step was to evaluate LS patient care at the various departments. We then established relevant outcomes for these individuals. Finally, we evaluated whether these outcomes were indeed relevant by conducting a survey amongst LS patients. © 2013 Springer Science+Business Media Dordrecht.

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