Abstract
BACKGROUND: Measuring health-related unmet needs is crucial for identifying innovation gaps and developing targeted strategies to address them. This study focused on measuring the unmet needs of patients with Crohn's disease in Belgium using a standardised methodology that can facilitate comparisons across different diseases. Crohn's disease is a chronic condition characterised by a rising incidence over the past century and limited progress in understanding its causes or advancing effective treatments. METHODS: We conducted an online survey (n = 150) and semi-structured interviews (n = 20) with adults affected by Crohn's disease. Descriptive statistics were used to analyse survey results, and thematic analysis was applied to interview transcripts. Unmet needs were classified a-priori into health, healthcare, and social aspects. RESULTS: The study revealed unmet needs beyond the well-known symptoms of Crohn's. One in five survey respondents waited over a year for a diagnosis, and 18% considered their treatment as rather or very burdensome. At least 75% reported diarrhoea, fatigue, and abdominal cramps as rather or very burdensome, and around 40% experienced rather or very burdensome stress, anxiety, or depression. These symptoms, perceived as invisible, caused embarrassment, impacted sexual and family life, and led to social withdrawal. Psychological support was generally deemed insufficient, and around 40% of survey participants would have liked to be more involved in treatment decision-making. Only 50% of respondents who had interrupted work for at least a month returned to previous work levels, and 65% of the whole sample experienced financial impacts due to the disease. CONCLUSIONS: Crohn's patients experienced not only burdensome physical symptoms, but were also frequently affected by significant psychological symptoms, which significantly affected their quality of life. Although specialist care was adequate, faster diagnosis and better psychological support are needed. Future studies should explore the unmet needs of children and adolescents with Crohn's disease to complete the picture.