Multidisciplinary integrated care pathway for von Hippel-Lindau disease

Area of Science:

• Medical Genetics
• Oncology
• Clinical Practice Guidelines

Background:

• Clinical pathways standardize patient care by translating guidelines into local protocols.
• Von Hippel-Lindau (VHL) disease requires a coordinated, multidisciplinary approach to management.

Purpose of the Study:

• To establish a multidisciplinary integrated care pathway for VHL disease.
• To guide specialists and allied health professionals in managing VHL patients.

Main Methods:

• A modified Delphi consensus process involving a multidisciplinary panel from Dutch University Medical Centers.
• Co-creation of the pathway with patient representatives to incorporate patient-reported quality criteria.

Main Results:

• Consensus recommendations for optimal VHL care quality were established.
• A patient care pathway flowchart was developed, integrating international guidelines.
• The pathway is designed for implementation in VHL expertise and non-academic treatment clinics.

Conclusions:

• Multidisciplinary teams, including various medical specialists and specialized nurses, are crucial for optimal VHL care.
• The developed care pathway provides consensus recommendations for practitioner roles.
• This pathway can serve as a foundation for integrated care in other multiple neoplasia syndromes.