Abstract
BACKGROUND: Previous studies have examined the quality of life of patients with coeliac disease. There is a lack of understanding about potential changes in emotional responses and life challenges after diagnosis. This exploratory study aimed to evaluate the emotional impact, life challenges and quality of life in people living with coeliac disease in Germany. METHODS: An online survey was conducted among patients with coeliac disease to assess difficulties in implementing a gluten-free diet in daily life activities, including food shopping and preparation, and eating away from home, as well as additional costs of time and money. Furthermore, the questionnaire assessed the time of diagnosis, emotions felt after diagnosis and today, compliance regarding the gluten-free diet and sociodemographic data. Participants were recruited in 2022 via social media, newsletters and websites. Out of 1286 participants who had taken part in the survey, 766 met the inclusion criteria and were included in the data analysis. RESULTS: The majority of the respondents (aged 18-83 years) were female (93%) and almost 50% were diagnosed more than 5 years ago. Negative emotion ratings related to the disease were associated with age at the time of diagnosis and years passed since diagnosis. While compliance was high with 89% of respondents strictly adhering to the gluten-free diet, patients with coeliac disease reported mainly life challenges in social situations involving food such as out-of-home consumption in restaurants, at work and while travelling. These challenges appear to persist over time. CONCLUSIONS: Negative emotions and difficulties in implementing a gluten-free diet are negatively impacting individuals with coeliac disease, particularly in the first months after diagnosis. Particularly adolescents and young adults appear to be negatively impacted. The study emphasises the need to improve the quality of life in all impacted areas through better guidance and improved training of health professionals as well as food providers outside of home and through psychological counselling in the first year of diagnosis to better help individuals improve their quality of life.