Long-term follow-up in adults with coeliac disease: Predictors and effect on health outcomes

Abstract

Introduction

Guidelines recommend regular follow-up in coeliac disease, but effect of this on long-term outcomes remains unclear.

Aims

To evaluate predictors and significance of long-term follow-up.

Methods

677 previously diagnosed coeliac patients were recruited for a nationwide health survey. Medical data were gathered through interviews and patient records. Current symptoms and quality of life were assessed by validated questionnaires and blood samples were drawn for serology. All variables were compared between patients with and without long-term (>2 years) follow-up.

Results

15% had long-term follow-up, median duration 10 years. Predictors (p < 0.05) for the follow-up were immunological (35% vs. 24%) and circulatory (20% vs. 12%) comorbidities, whereas it was less common in subjects with musculoskeletal (23% vs. 34%) comorbidity and those not belonging to any at-risk group (16% vs. 27%). Patients with or without follow-up had comparable age, adherence and ability to manage a gluten-free diet and frequency of seropositivity. Also questionnaire scores paralleled, but those without follow-up reported more overall symptoms (16% vs. 26%). Most patients wished for follow-up.

Conclusion

Only a minority of patients had regular follow-up. However, patients with and without the follow-up were comparable in most long-term outcomes, indicating that it might not be always necessary. The results call for more personalized follow-up policies in coeliac disease.

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.