TABLE 1.

Criteria of VHL Care From the Patient Perspective

The health care provider recognizes VHL as a chronic physical condition.

The nurse practitioner informs the GP to be aware of VHL symptoms (physical and psychosocial) in patients in the Netherlands.

Patients with VHL are supervised and treated by health care providers who are specifically familiar with VHL and have sufficient experience in treating/supporting patients with VHL, preferably in a VHL expertise center.

The nurse specialist or GP has a signaling role and recognizes the complaints that may be related to VHL. The GP will investigate these complaints and refer them if necessary.

The health care provider knows that VHL does not have to be immediately visible, knows the symptoms and complaints, knows the impact and consequences of the VHL disorder for the patient, and participates in a multidisciplinary consultation.

The health care provider considers the severity of the complaints, the patient's ability to work, and the prognosis of the disease process.

The patient (and partner) receives extensive (oral and written) information and information about VHL, possible complaints, treatments, and forms of counseling.

In consultation with the coordinating care provider, the patient is monitored and treated at the correct times via a clear and integrated VHL‐specific care pathway.

Abbreviations: GP, general practitioner; VHL, von Hippel–Lindau.