DOI: 10.6084/m9.figshare.27939724
title: Patient perceptions of the Finnish guidelines enabling coeliac disease diagnosis without biopsies in adults

description: Diagnosis of coeliac disease based on serology only has been allowed since 2018 in Finland for adults meeting specific criteria. We studied the patient experiences and perceptions of this novel diagnostic option. Altogether 194 adult patients were questioned on socio‐demographic and health-related characteristics, quality of life and various coeliac disease-related issues. The results were compared between patients diagnosed with intestinal biopsy or based on serology only. Altogether 69 (36%) of the patients were diagnosed without duodenal biopsies. They were younger (median 43 vs. 51 years, <i>p</i> = 0.046), diagnosed more recently (2021 vs. 2020, <i>p</i> &lt; 0.001) and more often in primary health care (78% vs. 43%, <i>p</i> = 0.001), had fewer esophageal symptoms at diagnosis (17% vs. 30%, <i>p</i> = 0.046) and considered the diagnostic process easier (49% vs. 30%, <i>p</i> = 0.032) than those diagnosed by duodenal biopsy (<i>n</i> = 125). The no-biopsy group received less often dietician follow-up (4% vs. 17%, <i>p</i> = 0.012), reported more persistent symptoms (36% vs. 21%, <i>p</i> = 0.026) and experienced more stress due to the diet (68% vs. 47%, <i>p</i> = 0.039). Symptom persistence or stress were not associated with year of diagnosis or dietician follow-up. The groups were comparable in socio-economic characteristics, general health, quality of life, diagnostic delay, dietician guidance at diagnosis, and dietary adherence. The non-invasive approach resulted in de-centralized diagnosis and easier patient-experienced diagnostic process of coeliac disease, but was associated with increased risk for persistent symptoms and stress due to gluten-free diet. These results highlight the significance of appropriate patient guidance and support regardless of the diagnostic strategy. <b>Established knowledge on this subject</b>Finland was the first country to allow the diagnosis of coeliac disease without duodenal biopsies and based on serology only to selected adult patients.Feasibility of no-biopsy diagnosis of coeliac disease for adults has been debated globally.Patient perceptions and acceptance of the diagnostic process are important as coeliac disease is treated with life-long, strict gluten-free diet. Finland was the first country to allow the diagnosis of coeliac disease without duodenal biopsies and based on serology only to selected adult patients. Feasibility of no-biopsy diagnosis of coeliac disease for adults has been debated globally. Patient perceptions and acceptance of the diagnostic process are important as coeliac disease is treated with life-long, strict gluten-free diet. <b>New findings of this study</b>One-third of adult coeliac disease patients reported being diagnosed without duodenal biopsies, based on serology only in the period 2019–2022.No-biopsy diagnoses were made more often outside hospital settings and the patients found the diagnostic process less challenging than those diagnosed based on biopsy findings.No-biopsy diagnosis was associated with more common persistent symptoms and stress due to gluten-free diet, and less common dietician follow-up.The findings highlight the significance of adequate patient support and guidance regardless of diagnostic process. One-third of adult coeliac disease patients reported being diagnosed without duodenal biopsies, based on serology only in the period 2019–2022. No-biopsy diagnoses were made more often outside hospital settings and the patients found the diagnostic process less challenging than those diagnosed based on biopsy findings. No-biopsy diagnosis was associated with more common persistent symptoms and stress due to gluten-free diet, and less common dietician follow-up. The findings highlight the significance of adequate patient support and guidance regardless of diagnostic process.