Value-based healthcare in Lynch syndrome

Simone D Hennink, N. Hofland, J.P. Gopie, C. van der Kaa, K. de Koning, M. Nielsen, C. Tops, H. Morreau, W.H. de Vos Tot Nederveen Cappel, A.M. Langers, J.C. Hardwick, K.N. Gaarenstroom, R.A. Tollenaar, R.A. Veenendaal, A. Tibben, J. Wijnen, M. van Heck, C. van Asperen, J.A. Roukema, D.W. Hommes & 2 others F.J. Hes, H.F.A. Vasen

Research output: Contribution to journalArticleScientificpeer-review

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 € 3320 for the first cycle of care (€ 3550 including gynaecologic surveillance) and approximately 720 per subsequent annual cycle (€ 950 including gynaecologic surveillance).
Keywords: Lynch syndrome, Colorectal cancer, Endometrial cancer, Prevention, Value-based health care, Patient value, Outcome measures, Lynch syndrome registry
Original languageEnglish
Pages (from-to)347-354
JournalFamilial Cancer
Volume12
Issue number2
DOIs
Publication statusPublished - 17 May 2013

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Delivery of Health Care
DNA Mismatch Repair
Endometrial Neoplasms
Early Detection of Cancer
Uterus
Mutation
Neoplasms

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Hennink, S. D., Hofland, N., Gopie, J. P., van der Kaa, C., de Koning, K., Nielsen, M., ... Vasen, H. F. A. (2013). Value-based healthcare in Lynch syndrome. Familial Cancer, 12(2), 347-354. https://doi.org/10.1007/s10689-013-9655-6
Hennink, Simone D ; Hofland, N. ; Gopie, J.P. ; van der Kaa, C. ; de Koning, K. ; Nielsen, M. ; Tops, C. ; Morreau, H. ; de Vos Tot Nederveen Cappel, W.H. ; Langers, A.M. ; Hardwick, J.C. ; Gaarenstroom, K.N. ; Tollenaar, R.A. ; Veenendaal, R.A. ; Tibben, A. ; Wijnen, J. ; van Heck, M. ; van Asperen, C. ; Roukema, J.A. ; Hommes, D.W. ; Hes, F.J. ; Vasen, H.F.A. / Value-based healthcare in Lynch syndrome. In: Familial Cancer. 2013 ; Vol. 12, No. 2. pp. 347-354.
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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 € 3320 for the first cycle of care (€ 3550 including gynaecologic surveillance) and approximately 720 per subsequent annual cycle (€ 950 including gynaecologic surveillance).Keywords: Lynch syndrome, Colorectal cancer, Endometrial cancer, Prevention, Value-based health care, Patient value, Outcome measures, Lynch syndrome registry",
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Hennink, SD, Hofland, N, Gopie, JP, van der Kaa, C, de Koning, K, Nielsen, M, Tops, C, Morreau, H, de Vos Tot Nederveen Cappel, WH, Langers, AM, Hardwick, JC, Gaarenstroom, KN, Tollenaar, RA, Veenendaal, RA, Tibben, A, Wijnen, J, van Heck, M, van Asperen, C, Roukema, JA, Hommes, DW, Hes, FJ & Vasen, HFA 2013, 'Value-based healthcare in Lynch syndrome', Familial Cancer, vol. 12, no. 2, pp. 347-354. https://doi.org/10.1007/s10689-013-9655-6

Value-based healthcare in Lynch syndrome. / Hennink, Simone D; Hofland, N.; Gopie, J.P.; van der Kaa, C.; de Koning, K.; Nielsen, M.; Tops, C.; Morreau, H.; de Vos Tot Nederveen Cappel, W.H.; Langers, A.M.; Hardwick, J.C.; Gaarenstroom, K.N.; Tollenaar, R.A.; Veenendaal, R.A.; Tibben, A.; Wijnen, J.; van Heck, M.; van Asperen, C.; Roukema, J.A.; Hommes, D.W.; Hes, F.J.; Vasen, H.F.A.

In: Familial Cancer, Vol. 12, No. 2, 17.05.2013, p. 347-354.

Research output: Contribution to journalArticleScientificpeer-review

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T1 - Value-based healthcare in Lynch syndrome

AU - Hennink, Simone D

AU - Hofland, N.

AU - Gopie, J.P.

AU - van der Kaa, C.

AU - de Koning, K.

AU - Nielsen, M.

AU - Tops, C.

AU - Morreau, H.

AU - de Vos Tot Nederveen Cappel, W.H.

AU - Langers, A.M.

AU - Hardwick, J.C.

AU - Gaarenstroom, K.N.

AU - Tollenaar, R.A.

AU - Veenendaal, R.A.

AU - Tibben, A.

AU - Wijnen, J.

AU - van Heck, M.

AU - van Asperen, C.

AU - Roukema, J.A.

AU - Hommes, D.W.

AU - Hes, F.J.

AU - Vasen, H.F.A.

N1 - Geen affiliatie met TiU

PY - 2013/5/17

Y1 - 2013/5/17

N2 - 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).Keywords: Lynch syndrome, Colorectal cancer, Endometrial cancer, Prevention, Value-based health care, Patient value, Outcome measures, Lynch syndrome registry

AB - 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).Keywords: Lynch syndrome, Colorectal cancer, Endometrial cancer, Prevention, Value-based health care, Patient value, Outcome measures, Lynch syndrome registry

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Hennink SD, Hofland N, Gopie JP, van der Kaa C, de Koning K, Nielsen M et al. Value-based healthcare in Lynch syndrome. Familial Cancer. 2013 May 17;12(2):347-354. https://doi.org/10.1007/s10689-013-9655-6