Patient-centered value-based healthcare in long-term follow-up after pediatric stem cell transplantation for nonmalignant diseases

Author(s):
Bense, J.E. (0000-0002-7939-334X)
Published
2024
Publication type
Doctoral Thesis

Abstract

The first aim of this thesis was to evaluate the Late Effects Comprehensive Care & Follow-up (LEEF) program after pediatric stem cell transplantation for nonmalignant diseases at the LUMC, and includes the assessment of various late effects and health-related quality of life. The second aim was to implement and evaluate aspects of VBHC at the LEEF program. This thesis describes lessons learned from the VBHC implementation in the Late Effects Comprehensive Care & Follow-up (LEEF) program and suggests possible future directions for VBHC implementation in similar comprehensive care programs. In this thesis, patient-reported outcomes (PROs) have demonstrated their value in research, such as long-term quality of life studies, but they have also proven to be valuable when used in clinical practice.

The evaluation of PROs for both research purposes and clinical use can be expanded within the broader care path of pediatric stem cell transplantation. Furthermore, when discussing long-term HSCT outcomes, it is not solely about survival rates, but PROs are integral to capturing these long-term outcomes.

Patient-Centered CareValue-Based HealthcareLong-term Follow-upLate effectsStem Cell TransplantationBone Marrow TransplantationNonmalignant DiseasesPatient-reported outcomesPatient-reported experiences
Defense date
2024-02-29
Language
English
Supervisor(s)
Lankester, A.C.; Stiggelbout, A.M.
Advisor(s)
Pagter, A.P.J. de
Committee member(s)
Bos, W.J.W.; Slatter, M.A.; Ahaus, K.; Kollen, W.J.W.
Qualification
Ph.D.
Degree granting institution
Faculty of Medicine, Leiden University Medical Center (LUMC), Leiden University, Leiden
hdl
1887/3720035
ISBN(s)
9789464837841