The impact of symptoms on quality of life before and after diagnosis of coeliac disease: the results from a Polish population survey and comparison with the results from the United Kingdom

Abstract

Background Coeliac disease (CD) is characterised by diverse clinical symptoms, which may cause diagnostic problems and reduce the patients’ quality of life. A study conducted in the United Kingdom (UK) revealed that the mean time between the onset of coeliac symptoms and being diagnosed was above 13 years. This study aimed to analyse the diagnostic process of CD in Poland and evaluate the quality of life of patients before and after CD diagnosis. In addition, results were compared to the results of the original study conducted in the UK. Methods The study included 2500 members of the Polish Coeliac Society. The patients were asked to complete a questionnaire containing questions on socio-demographic factors, clinical aspects and quality of life, using the EQ-5D questionnaire. Questionnaires received from 796 respondents were included in the final analysis. Results The most common symptoms reported by respondents were bloating (75%), abdominal pain (72%), chronic fatigue (63%) and anaemia (58%). Anaemia was the most persistent symptom, with mean duration prior to CD diagnosis of 9.2 years, whereas diarrhoea was observed for the shortest period (4.7 years). The mean duration of any symptom before CD diagnosis was 7.3 years, compared to 13.2 years in the UK. CD diagnosis and the introduction of a gluten-free diet substantially improved the quality of life in each of the five EQ-5D-5L health dimensions: pain and discomfort, anxiety and depression, usual activities, self-care and mobility (p < 0.001), the EQ-Index by 0.149 (SD 0.23) and the EQ-VAS by 30.4 (SD 28.3) points. Conclusions Duration of symptoms prior to the diagnosis of CD in Poland, although shorter than in the UK, was long with an average of 7.3 years from first CD symptoms. Faster CD diagnosis after the onset of symptoms in Polish respondents may be related to a higher percentage of children in the Polish sample. Introduction of a gluten-free diet improves coeliac patients’ quality of life. These results suggest that doctors should be made more aware of CD and its symptoms across all age groups.

Clinical Manifestation and Diagnostic Process of Celiac Disease in Poland—Comparison of Pediatric and Adult Patients in Retrospective Study

“…A recent study performed in the United Kingdom revealed that the majority of endoscopists did not follow guidelines for diagnostic endoscopy for CD, which led to a reduction in diagnosis rates by over 50% [ 17 ]. In addition, the longer diagnostic delay observed in adults might result from the fact that, in Poland, CD has been regarded as a pediatric disease until quite recently [ 9 ]. The Polish manual “Internal diseases: a manual for medical students”, edited by Franciszek Kokot and issued in 1991, states that “Since celiac disease is a pediatric disorder, it will not be presented in detail in this manual” [ 18 ].…”

“…The detailed description of the questionnaire was presented in our recently published paper [ 9 ]. The questionnaire was based on the original questionnaire, “The Impact of Coeliac Disease on Your Life: A Survey of Your Views”, developed by Gray and Papanicolas with the consent of the authors [ 10 ].…”

“…In our recent study, we reported that the time from first symptoms to diagnosis of CD in Poland lasted 7.3 years on average. Although long, this was significantly shorter ( p < 0.001) than the comparable CD diagnostic delay in the United Kingdom of 13.2 years [ 9 ]. This difference might be partly explained by the fact that there were more children in the Polish study group than in the British study group (28.1% and 12.4%, respectively).…”

Review article: Systemic consequences of coeliac disease

“…92,95,96 The underlying pathogenesis and role of gluten-free diet on psychological symptoms and quality of life are currently unclear due to the paucity of the long-term follow-up studies. 97,98 Altogether, patients' mental health and the presence of psychiatric symptoms require attention when coeliac disease is diagnosed. Low-threshold psychiatric consultation should be provided at the latest when the symptoms persist despite successful treatment or there is a suspicion of concomitant psychiatric disease.…”

“…However, psychiatric comorbidities have been reported to be increased also among treated coeliac disease patients 92,95,96 . The underlying pathogenesis and role of gluten‐free diet on psychological symptoms and quality of life are currently unclear due to the paucity of the long‐term follow‐up studies 97,98 . Altogether, patients' mental health and the presence of psychiatric symptoms require attention when coeliac disease is diagnosed.…”