Multidisciplinary integrated care pathway for von Hippel-Lindau disease

Abstract

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.

Keywords: care pathway; hemangioblastoma; pancreatic neuroendocrine tumor; renal cell carcinoma; retinal angioma; von Hippel-Lindau (VHL).

Figure 1

VHL care pathway. CT indicates computed tomography; ENT, ear‐nose‐throat; EUS, endoscopic ultrasound; MDTM, multidisciplinary team meeting; MRI, magnetic resonance imaging; PET, positron emission tomography; pNET, pancreatic neuroendocrine tumor; QOL, quality of life; VHL, von Hippel–Lindau.