Implementation and use of patient-reported outcome measures in routine nephrology care

Willik, E.M. van der (2023)

Doctoral Thesis

Healthcare is shifting towards a more person-centred approach, aiming at a personalised treatment that fits the patient’s preferences and needs⁠. The use of patient-reported outcome measures (PROMs) to systematically assess outcomes such as health-related quality of life and symptom burden can facilitate the process of adapting to what is important to the patient⁠. But, how to integrate PROMs into a routine care setting and how to use PROMs to achieve this personalised treatment? This dissertation provides insight into and practical knowledge of the implementation and use of PROMs in routine nephrology care⁠. Research was performed within the different steps for implementation of PROMs into routine care, including the selection of PROMs, pilot testing PROMs, and nationwide implementation and use of PROMs, using a broad variety of quantitative and qualitative research methods⁠. The use of PROMs was investigated both at individual patient level and at population level, with the potential to facilitate personalised treatment and evaluation of healthcare quality⁠. Patients and healthcare professionals considered the PROM-results relevant additional information in routine practice, complementary to traditional clinical measures⁠. In addition, discussing individual PROM results proved to be of great added value and directly applicable in routine care⁠.

• Dialysis
• Chronic kidney disease
• Patient-reported outcomes
• Patient-reported outcome measures
• Questionnaires
• Health-related Quality of life
• Symptom burden
• Itching
• Healthcare quality
• Patient-professional communication

• All authors: Willik, E.M. van der
• Supervisor: Dekker, F.W.; Hemmelder, M.H.
• Co-supervisor: Meuleman, Y.
• Committee: Bos, W.J.W.; Rotmans, J.I.; Wouters, M.W.J.M.; Keizer, N.F. de
• Qualification: Doctor (dr.)
• Awarding Institution: Faculty of Medicine, Leiden University Medical Center (LUMC), Leiden University
• Date: 2023-06-08
• ISBN (print): 9789464197938
• Sponsorship: The work in this dissertation was supported by unrestricted grants from the Dutch Kidney Foundation (A1D1P04 and 18SWO03), the KIDZ program of the Dutch Patient Federation, the Dutch Health Insurers Association and CSL Vifor⁠. Printing of this dissertation was partially sponsored by Chiesi Pharmaceuticals B⁠.V⁠. and CSL Vifor⁠.