Family screening and the psychosocial implications of Coeliac disease

Abstract

BACKGROUND: Screening of first-degree relatives of patients with coeliac disease is recommended, though evidence on the frequency of repeat screening is lacking. Diagnosis of a chronic condition can have psychosocial implications. The aims of this study were to determine the proportion of first-degree relatives of patients who were screened and diagnosed with coeliac disease, as well as to determine the impact of the condition on their quality of life.

METHODS: Patients diagnosed histologically at Mater Dei Hospital in Malta, between May 2009 and December 2018, were asked regarding family screening and a questionnaire was used to assess the effects of coeliac disease on their quality of life (n=96, 79% female, mean age: 46, 29.2% asymptomatic).

RESULTS: 11.4% of tested first-degree relatives were diagnosed with coeliac disease, despite only 31.7% (165/520) of first-degree relatives having undergone routine screening at least once and only 3.1% (16/520) having undergone multiple screening tests.

77% of index cases felt that other people do not understand their dietary needs. 38.5% avoid social activities because of their dietary requirements. 76% experience difficulty in finding something suitable to eat when not at home. Importantly, 83.3% claimed significantly increased costs.

CONCLUSION: The prevalence of CD in first-degree relatives of index CD patients is higher than that of the general population. However, a greater emphasis needs to be employed in ensuring serological screening of the at-risk groups.