PhD defence I. (Inge) Apon

Below is a brief summary of the dissertation:

In 2016, the ICHOM Standard Set for Cleft Lip and Palate was implemented in routine clinical practice for the first time at the Erasmus MC, followed by several other hospitals in the United States and Sweden. The Standard Set includes, aside of clinical indicators and case-mix variables, nine CLEFT-Q scales, the COHIP-OSS, the NOSE instrument and the Intelligibility in Context Scale to measure the patient’s perspective on health. Since the use of outcome instruments in cleft practice is a relatively new and spreading phenomenon, it is in need of an evaluation to determine what it delivers and where and how to improve. Therefore, this thesis covers multiple aspects concerning the measurement challenges of patientreported outcomes in patients with a cleft and the implementation challenges of these outcome measures in clinical cleft practice. Specific research questions discussed in this thesis were:

1. How can we optimize the measurement of patient-reported outcomes in the ICHOM Standard Set for Cleft Lip and Palate?

a. How is the psychometric performance and concept coverage of the patient-reported outcome measures of the ICHOM Standard Set for Cleft Lip and Palate?

b. How can we maximize information while reducing burden when measuring psychosocial function within the ICHOM Standard Set for Cleft Lip and Palate?

c. What is the external validity of the CLEFT-Q Computerized Adaptive Test (CAT) in patients with cleft lip and palate?

2. How can we optimize the implementation of the ICHOM Standard Set for Cleft Lip and Palate in clinical cleft care? a. What are facilitators and barriers to the implementation of the ICHOM Standard Set for Cleft Lip and Palate in clinical practice?

b. What are the healthcare use and medical costs patterns of clinical cleft care and how is this influenced by the use of the ICHOM Standard Set for Cleft lip and Palate?