title: Value-based healthcare in Lynch syndrome.
abstract: 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 <euro> 3320 for the first cycle of care (<euro> 3550 including gynaecologic surveillance) and approximately 720 per subsequent annual cycle (<euro> 950 including gynaecologic surveillance).
authors.affiliation: Department of Gastroenterology and Hepatology, Leiden University Medical Centre, Leiden, The Netherlands.
authors.forename: Simone D
authors.initials: SD
authors.lastname: Hennink
authors.forename: Nandy
authors.initials: N
authors.lastname: Hofland
authors.forename: Jessica P
authors.initials: JP
authors.lastname: Gopie
authors.forename: Corinne
authors.initials: C
authors.lastname: van der Kaa
authors.forename: Kimberley
authors.initials: K
authors.lastname: de Koning
authors.forename: Maartje
authors.initials: M
authors.lastname: Nielsen
authors.forename: Carli
authors.initials: C
authors.lastname: Tops
authors.forename: Hans
authors.initials: H
authors.lastname: Morreau
authors.forename: Wouter H
authors.initials: WH
authors.lastname: de Vos tot Nederveen Cappel
authors.forename: Alexandra M J
authors.initials: AM
authors.lastname: Langers
authors.forename: James C
authors.initials: JC
authors.lastname: Hardwick
authors.forename: Katja N
authors.initials: KN
authors.lastname: Gaarenstroom
authors.forename: Rob A
authors.initials: RA
authors.lastname: Tollenaar
authors.forename: Roeland A
authors.initials: RA
authors.lastname: Veenendaal
authors.forename: Aad
authors.initials: A
authors.lastname: Tibben
authors.forename: Juul
authors.initials: J
authors.lastname: Wijnen
authors.forename: Magdalena
authors.initials: M
authors.lastname: van Heck
authors.forename: Christi
authors.initials: C
authors.lastname: van Asperen
authors.forename: Anne J
authors.initials: AJ
authors.lastname: Roukema
authors.forename: Daan W
authors.initials: DW
authors.lastname: Hommes
authors.forename: Frederik J
authors.initials: FJ
authors.lastname: Hes
authors.forename: Hans F A
authors.initials: HF
authors.lastname: Vasen
mesh_terms: D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000191:economics* / Q000517:prevention & control*; D055088:Early Detection of Cancer; D005820:Genetic Testing; D006801:Humans; D017063:Outcome Assessment, Health Care; D012042:Registries; D011795:Surveys and Questionnaires