Value Based Health Care for a Rare Disease

A research guided approach that adds value to patients


We are the pituitary team of the Leiden University Medical Center. We used to be well organized in a team with pituitary neurosurgeons and endocrinologists, with support of ophthalmologists, ENT surgeons and radiologists. From 2016 onwards we joined forces with help of the innovation department of the LUMC and created a more integrated care path, and structured outcome measures. We defined innovation projects and planned structured evaluations of care. The ground for new ideas was based on the combination clinic in which endocrinologist and neurosurgeon together discuss pros and cons of medical or surgical treatments. In rare disease we lack proper evidence and therefore the experience of the two team members are vital information sources for decision making. We reached out to the world to share practices in a multidisciplinary care workshop called CAPITAL. Striving for the optimal choice we challenged ourselves and others with many new initiatives that truly and objectively improved our outcomes and our practice has grown from 50 surgeries a year to 150 a year in only 4 years time. Challenges were introduction of a quality meeting every week with the full team, structured 6 months assessments of patient outcomes, PDCA cycles of new projects (shorter stay, less endocrine testing, 3 instead of 2 surgeries a day), innovated imaging together with nuclear medicine, a prolactinoma trial to compare medical and surgical therapy etc etc. We closely collaborate with the rare disease network EndoERN and hope our experiences on outcome measures will be helpful for their future registries.