Value based pituitary care: implementing value based health care in a rare disease

Abstract

The research presented in this thesis highlights some of the lessons learned and challenges we encountered during the transition to Value Based Health Care (VBHC)-based care for patients with a pituitary tumor. The lack of uniform definitions across the literature currently limits comparability of outcomes between centers. By implementing a comprehensive VBHC-based set of outcomes following the three Tier model and including patient-reported outcome measures (PROMs) for endoscopic transsphenoidal pituitary surgery continuous clinical evaluations are possible and comparability between centers will be improved. We have shown that the implementation of a short-stay care trajectory is effective, feasible and can be safely done alongside a well-defined care trajectory. We also have shown, that having a pituitary tumor has a major impact on social participation, specifically having a paid job, but also healthcare use. Results presented in this thesis suggest that targeted interventions are necessary and should be based on the disease burden and needs of patients in both the acute and chronic phase of the disease. Future research should focus on obtaining international consensus to determine which outcomes should be implemented in the care trajectory for pituitary tumors. This thesis has made a first step to reaching this goal.