Endocrine Abstracts

Introduction: Von Hippel-Lindau (VHL) syndrome is a complex multi-organ disorder with significant associated morbidity and mortality. Patients see multiple specialities and have many clinic appointments which can significantly disrupt their lives. In 2012 the St Bartholomew’s VHL multi-disciplinary clinic was set up. It consists of an amalgamated one-stop clinic for patients and their families when all relevant specialities are seen in one sitting. The major aims were to: i) provide a more cohesive service and maximise patient benefit from appointments; ii) consolidate clinical experience and expertise in the management of VHL.

Methods: Analysis of medical records from 2000 until the present day for all VHL patients cared for at St Bartholomew’s Hospital, London. A prospective patient questionnaire was completed by patients attending the clinic.

Results: 27 VHL patients (15 male) are under the care of St Bartholomew’s Hospital; 18 (66.7%) attend the multi-disciplinary clinic. 21 completed questionnaires were returned. The mean number of hospital attendances per patient per year was 3.34. This was significantly less after the introduction of the multi-disciplinary clinic (3.59 vs 2.50, P<0.05). All but two patients attended hospital less frequently after the introduction of the multi-disciplinary clinic. Patient feedback was positive. All respondents thought a one-stop clinic was a good idea and 95% preferred to be seen at the same time as their family. Recurring comments included the benefits of combined consultations and the time saved. The vital role of the specialist nurse was highlighted. Reported downsides were limited and centred on the organisation of the consultation.

Discussion: An amalgamated one-stop multi-disciplinary VHL clinic is practical and reduces hospital appointments whilst being well received by patients. In addition the physical bringing together of all interested parties (both patient and medical) allows for improved communication and truly shared decision making.