Alimentary TractLong-term follow-up in adults with coeliac disease: Predictors and effect on health outcomes
Introduction
Coeliac disease is a lifelong gluten-induced autoimmune enteropathy with a prevalence up to 2% in Caucasian populations [1]. The only treatment is a strict gluten-free diet, the initiation of which usually elicits a clear clinical and histological response and disappearance of the disease-specific autoantibodies [2]. Unfortunately, the high cost and restrictive nature of the gluten-free diet predisposes to poor adherence and subsequently to persistent enteropathy and an increased risk of serious complications such as osteoporotic fractures and malignancy [3], [4], [5], [6]. Moreover, there is a subgroup of patients with a condition called refractory coeliac disease, who do not attain adequate clinical and histological recovery despite a strict diet and thus have particularly poor prognosis [7].
In order to ensure proper adherence and response to the gluten-free diet and to detect possible complications, most current guidelines recommend regular long-term follow-up in coeliac disease even as often as annually [2], [8]. However, there is a paucity of evidence as to how the follow-up is actually implemented in clinical practice, and whether the absence of follow-up really affects the long-term coping and health of the patients [9], [10], [11], [12], [13], [14], [15]. Interestingly, in a 15-year follow-up we recently found that the lack of a repeat biopsy one year after coeliac disease diagnosis is not associated with an increased risk of adverse outcomes such as reduced well-being or malignancies [16]. This would indicate that the association between the presence of follow-up and the prognosis of coeliac disease is more complex than one might expect.
To further elucidate the significance of regular follow-up to the treatment success in coeliac disease, we conducted a nationwide survey and compared various patient-related and other relevant factors between large cohorts of coeliac disease patients with or without long-term follow-up after diagnosis.
Section snippets
Patients and study design
A nationwide cross-sectional health survey was carried out in Tampere University Hospital and the University of Tampere. The survey was created to investigate variable aspects of the treatment success in coeliac disease, not just factors associated with the long-term follow-up. The participants were recruited through newspaper advertisements and with the aid of coeliac disease societies. Inclusion criteria were age ≥18 years and a biopsy-proven diagnosis at least two years before enrolment. All
Results
The median age of the whole study cohort was 44 (range 22–89) years and 80% were women. The median follow-up time for the whole study group was 10 (range 2–38) years. Out of the 677 participants, 99 (15%) had and 578 (85%) had not received long-term follow-up for coeliac disease.
Discussion
We found the prevalence of regular long-term follow-up to be only 15% in Finnish coeliac disease patients [16]. This is in stark contrast to our national guidelines which recommend systematic clinical and serological follow-up at 2–3 years intervals in all patients. It is also a markedly lower percentage than reported previously. In the early 1990s Bardella et al. [25] reported a follow-up rate of 77%. Bebb et al. found the corresponding figure to be 62%, although only 6% of the patients later
Conflict of interest
None declared.
Funding
This study was supported by the Academy of Finland, the Sigrid Juselius Foundation, the Competitive State Research Financing of the Expert Area of Tampere University Hospital, the Foundation for Paediatric Research, the Yrjö Jahnsson Foundation, and the Orion Research Foundation.
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