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Measurement and valuation of health and capability well-being outcomes in adults with coeliac disease
Angyal Mária Mercédesz
KÁROLY RÁCZ CONSERVATIVE MEDICINE PROGRAM
Dr. Fekete Andrea
SE Semmelweis Szalon
2026-06-08 12:30:00
Dermatology and Venereology
Dr. Sárdy Miklós
Dr. Rencz Fanni
Dr. Béres Nóra
Dr. Bajor Judit
Dr. Kalabay László
Dr. Inotai András
Dr. Bozsányi Szabolcs
This PhD thesis investigated HRQoL and capability well-being in individuals with CD. The work consisted of three separate but related studies based on a cross-sectional survey among 312 Hungarian adult CD patients between 2020-21. The first study generated the first TTO-based utility values in adults with CD, alongside VAS and WTP values for current health and three hypothetical health states reflecting different levels of adherence to a GFD. Poor or absent adherence to a GFD resulted in decreases in utilities, underscoring the HRQoL burden of untreated CD. Older age at diagnosis, male gender, lower income, more severe gastrointestinal symptoms, and comorbidities were associated with worse outcomes. These results provide crucial information for future cost-utility analyses of interventions, including dietary support. The second study examined the psychometric performance of five EQ-5D-5L bolt-on dimensions (cognition, sleep, tiredness, dining, and gastrointestinal problems) in CD. Adding bolt-ons reduced ceiling effects and improved the instrument’s informativity. Among them, the gastrointestinal bolt-on demonstrated the strongest psychometric performance, highlighting the continued relevance of gastrointestinal symptoms even among patients following a GFD. The third study provided the first psychometric assessment of ICECAP-A in CD, evaluating its ability to capture capability well-being impacts beyond health. ICECAP-A demonstrated good measurement properties with no ceiling effects and stronger associations with SWLS than EQ-5D-5L. However, EQ-5D-5L showed greater sensitivity to clinically defined differences in gastrointestinal symptom severity. These findings suggest that ICECAP-A complements generic HRQoL measures and may be valuable in evaluating social and emotional consequences of CD. Overall, this PhD thesis contributes new utility data, demonstrates the value of EQ-5D-5L bolt-ons, and support the use of capability measures to capture the wider impacts of CD. The findings provide a methodological basis for more accurate outcome assessment and health economic evaluations in CD.