TY - JOUR
T1 - Multidisciplinary integrated care pathway for von Hippel–Lindau disease
AU - Wolters, Wendy P.G.
AU - Dreijerink, Koen M.A.
AU - Giles, Rachel H.
AU - van der Horst-Schrivers, Anouk N.A.
AU - van Nesselrooij, Bernadette
AU - Zandee, Wouter T.
AU - Timmers, Henri J.L.M.
AU - Seute, Tatjana
AU - de Herder, Wouter W.
AU - Verrijn Stuart, Annemarie A.
AU - Kilic, Emine
AU - Brinkman, Willem M.
AU - Zondervan, Patricia J.
AU - Vandertop, W. Peter
AU - Daniels, Anthony B.
AU - Wolbers, Tijmen
AU - Links, Thera P.
AU - van Leeuwaarde, Rachel S.
N1 - Publisher Copyright:
© 2022 The Authors. Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.
PY - 2022/8/1
Y1 - 2022/8/1
N2 - BACKGROUND: Clinical pathways are care plans established to describe essential steps in the care of patients with a specific clinical problem. They translate (inter)national guidelines into local applicable protocols and clinical practice. The purpose of this article is to establish a multidisciplinary integrated care pathway for specialists and allied health care professionals in caring for individuals with von Hippel–Lindau (VHL) disease. METHODS: Using a modified Delphi consensus-making process, a multidisciplinary panel from 5 Dutch University Medical Centers produced an integrated care pathway relating to the provision of care for patients with VHL by medical specialists, specialized nurses, and associated health care professionals. Patient representatives cocreated the pathway and contributed quality criteria from the patients' perspective. RESULTS: The panel agreed on recommendations for the optimal quality of care for individuals with a VHL gene mutation. These items were the starting point for the development of a patient care pathway. With international medical guidelines addressing the different VHL-related disorders, this article presents a patient care pathway as a flowchart that can be incorporated into VHL expertise clinics or nonacademic treatment clinics. CONCLUSIONS: Medical specialists (internists, urologists, neurosurgeons, ophthalmologists, geneticists, medical oncologists, neurologists, gastroenterologists, pediatricians, and ear-nose-throat specialists) together with specialized nurses play a vital role alongside health care professionals in providing care to people affected by VHL and their families. This article presents a set of consensus recommendations, supported by organ-specific guidelines, for the roles of these practitioners in order to provide optimal VHL care. This care pathway can form the basis for the development of comprehensive, integrated pathways for multiple neoplasia syndromes.
AB - BACKGROUND: Clinical pathways are care plans established to describe essential steps in the care of patients with a specific clinical problem. They translate (inter)national guidelines into local applicable protocols and clinical practice. The purpose of this article is to establish a multidisciplinary integrated care pathway for specialists and allied health care professionals in caring for individuals with von Hippel–Lindau (VHL) disease. METHODS: Using a modified Delphi consensus-making process, a multidisciplinary panel from 5 Dutch University Medical Centers produced an integrated care pathway relating to the provision of care for patients with VHL by medical specialists, specialized nurses, and associated health care professionals. Patient representatives cocreated the pathway and contributed quality criteria from the patients' perspective. RESULTS: The panel agreed on recommendations for the optimal quality of care for individuals with a VHL gene mutation. These items were the starting point for the development of a patient care pathway. With international medical guidelines addressing the different VHL-related disorders, this article presents a patient care pathway as a flowchart that can be incorporated into VHL expertise clinics or nonacademic treatment clinics. CONCLUSIONS: Medical specialists (internists, urologists, neurosurgeons, ophthalmologists, geneticists, medical oncologists, neurologists, gastroenterologists, pediatricians, and ear-nose-throat specialists) together with specialized nurses play a vital role alongside health care professionals in providing care to people affected by VHL and their families. This article presents a set of consensus recommendations, supported by organ-specific guidelines, for the roles of these practitioners in order to provide optimal VHL care. This care pathway can form the basis for the development of comprehensive, integrated pathways for multiple neoplasia syndromes.
KW - care pathway
KW - hemangioblastoma
KW - pancreatic neuroendocrine tumor
KW - renal cell carcinoma
KW - retinal angioma
KW - von Hippel-Lindau (VHL)
KW - von Hippel–Lindau (VHL)
UR - http://www.scopus.com/inward/record.url?scp=85130106942&partnerID=8YFLogxK
U2 - 10.1002/cncr.34265
DO - 10.1002/cncr.34265
M3 - Article
C2 - 35579632
SN - 0008-543X
VL - 128
SP - 2871
EP - 2879
JO - Cancer
JF - Cancer
IS - 15
ER -