Value-based healthcare in Lynch syndrome

Springer Science and Business Media LLC - Tập 12 - Trang 347-354 - 2013
Simone D. Hennink1, Nandy Hofland2, Jessica P. Gopie2, Corinne van der Kaa3, Kimberley de Koning3, Maartje Nielsen2, Carli Tops2, Hans Morreau4, Wouter H. de Vos tot Nederveen Cappel5, Alexandra M. J. Langers1, James C. Hardwick1, Katja N. Gaarenstroom6, Rob A. Tollenaar7, Roeland A. Veenendaal1, Aad Tibben2, Juul Wijnen2, Magdalena van Heck3, Christi van Asperen2, Anne J. Roukema3,8, Daan W. Hommes9, Frederik J. Hes2, Hans F. A. Vasen1,3
1Department of Gastroenterology and Hepatology, Leiden University Medical Centre, Leiden, The Netherlands
2Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands
3Dutch Lynch Syndrome Registry, Netherlands Foundation for the Detection of Hereditary Tumors, Leiden, The Netherlands
4Department of Pathology, Leiden University Medical Centre, Leiden, The Netherlands
5Department of Gastroenterology and Hepatology, Isala Clinics, Zwolle, The Netherlands
6Department of Gynaecology, Leiden University Medical Centre, Leiden, The Netherlands
7Department of Surgery, Leiden University Medical Centre, Leiden, The Netherlands
8Department of Surgery, St Elisabeth Hospital, Tilburg, The Netherlands
9Division of Digestive Diseases, University of California, Los Angeles, USA

Tóm tắt

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).

Tài liệu tham khảo

Hampel H, Frankel WL, Martin E, Arnold M, Khanduja K, Kuebler P et al (2005) Screening for the Lynch syndrome (hereditary nonpolyposis colorectal cancer). N Engl J Med 352(18):1851–1860 Lynch HT, Lynch PM, Lanspa SJ, Snyder CL, Lynch JF, Boland CR (2009) Review of the Lynch syndrome: history, molecular genetics, screening, differential diagnosis, and medicolegal ramifications. Clin Genet 76(1):1–18 Jarvinen HJ, Mecklin JP, Sistonen P (1995) Screening reduces colorectal cancer rate in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 108(5):1405–1411 Porter ME (2010) What is value in health care? N Engl J Med 363(26):2477–2481 Vasen HF, Blanco I, Aktan-Collan K, Gopie JP, Alonso A, Aretz S, et al. Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European experts. Gut 2013 Feb 21 Renkonen-Sinisalo L, Butzow R, Leminen A, Lehtovirta P, Mecklin JP, Jarvinen HJ (2007) Surveillance for endometrial cancer in hereditary nonpolyposis colorectal cancer syndrome. Int J Cancer 120(4):821–824 Engel C, Rahner N, Schulmann K, Holinski-Feder E, Goecke TO, Schackert HK et al (2010) Efficacy of annual colonoscopic surveillance in individuals with hereditary nonpolyposis colorectal cancer. Clin Gastroenterol Hepatol 8(2):174–182 Mecklin JP, Aarnio M, Laara E, Kairaluoma MV, Pylvanainen K, Peltomaki P et al (2007) Development of colorectal tumors in colonoscopic surveillance in Lynch syndrome. Gastroenterology 133(4):1093–1098 Vasen HF, Abdirahman M, Brohet R, Langers AM, Kleibeuker JH, van Kouwen M et al (2010) One to 2-year surveillance intervals reduce risk of colorectal cancer in families with Lynch syndrome. Gastroenterology 138(7):2300–2306 Stuckless S, Green J, Morgenstern M, Kennedy C, Green R, Woods M et al (2012) Impact of colonoscopic screening in male and female Lynch syndrome carriers with an MSH2 mutation. Clin Genet 82(5):439–445 Wagner A, van Kessel I, Kriege MG, Tops CM, Wijnen JT, Vasen HF et al (2005) Long term follow-up of HNPCC gene mutation carriers: compliance with screening and satisfaction with counseling and screening procedures. Fam Cancer 4(4):295–300 Gopie JP, Vasen HF, Tibben A (2012) Surveillance for hereditary cancer: does the benefit outweigh the psychological burden?-A systematic review. Crit Rev Oncol Hematol 83(3):329–340