In:
Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 39, No. 15_suppl ( 2021-05-20), p. e13534-e13534
Abstract:
e13534 Background: The objective was to establish a comprehensive set of patient-driven recommendations for specialists and allied healthcare professionals for the care of individuals with the multiple neoplasia syndrome von Hippel-Lindau (VHL). VHL patients require multiple surgeries during the course of their lifetimes, due to cysts and tumors in various organs including the kidney, brain, eye, spine, pancreas, adrenal glands, and broad ligament/epididymis. Screening and care from multiple specialists form the backbone of their care, yet this is rarely coordinated in an optimal manner. Methods: The Dutch VHL patient organization (Belangenvereniging VHL) initiated this process, and approached specialists and expert patients for input. Using components of consensus methodology, a 20-member multidisciplinary panel produced an integrated care pathway relating to the provision of care for VHL patients by patients, medical specialists, specialist nurses and allied healthcare professionals. Items were developed by 3 rounds of email correspondence in which the basis was formed for a consensus meeting which constituted the third round of review. The fourth and final round was an email review of the consensus output. Results: The panel agreed on recommendations for the optimal quality of care for VHL patients, in the form of a decision tree, which is supervised by a nurse specialist as a main contact point. These items were grouped under categories of "Diagnosis" and "Patient Pathway" and included recommendations on training, communication, and quality assessment as well as specific items related to VHL diagnosis clinics, non-academic treatment clinics, and follow-up survivor groups. The Netherlands has 3 official Expert Reference Centers for VHL care (Groningen, Utrecht, Nijmegen), and the patient organization and allied specialists are planning to publish this protocol, while implementing its practice in those 3 sites. Conclusions: Medical specialists (internists, endocrinologists, urologists, neurosurgeons, ophthalmologists, geneticists, etc) and specialist nurses play a vital role alongside allied healthcare professionals to provide care to people with VHL and their families. Yet VHL patients and their families are the experts most acquainted with their own unmet needs. We present a set of standards and consensus recommendations from the patient perspective for the roles for these practitioners to provide optimal VHL care. These recommendations could form the basis for facilitated development of comprehensive integrated pathways for any pleiotropic neoplasia syndrome, and represent best-practice collaboration between patient organizations and national expertise centers to provide value-based healthcare.
Type of Medium:
Online Resource
ISSN:
0732-183X
,
1527-7755
DOI:
10.1200/JCO.2021.39.15_suppl.e13534
Language:
English
Publisher:
American Society of Clinical Oncology (ASCO)
Publication Date:
2021
detail.hit.zdb_id:
2005181-5
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