Patients' experiences and perceptions of living with coeliac disease - implications for optimizing care

Abstract

Background and aims: Little is known regarding the impact of coeliac disease on daily living from patients' own viewpoints. The aim of the study was to investigate patients' perceptions of their disease, dietary treatment and self-rated healthcare needs.

Methods: This prospective study involved 698 newly detected adult coeliac disease patients diagnosed due to classical abdominal symptoms, extraintestinal symptoms or active screening in at-risk groups. Participants were asked about their experiences of living with coeliac disease and of adopting a gluten-free diet, as well as their disease-related needs at diagnosis and after one year on treatment.

Results: All patients were equally satisfied that they had been diagnosed with coeliac disease irrespective of initial clinical presentation. However, young patients and those with extraintestinal symptoms or asymptomatic and detected by screening in at-risk groups rated the impact on daily living of the disease and adherence to a gluten-free diet with significantly more disapproval than those with classical symptoms. The former groups clarify also reported dietary lapses and a negative attitude to the disease more frequently. Negative perceptions were associated with dissatisfaction with the quality of doctor-patient communication and younger age at diagnosis.

Conclusions: Established doctor-patient communication is essential in minimizing the disease burden. Particularly young and screen-detected asymptomatic patients and those with extraintestinal manifestations require extensive support.

Trial registration: ClinicalTrials.gov NCT01145287.