Laura Kivelä1,2, Sointu Hekkala1,3, Heini Huhtala4, Katri Kaukinen3,5,6, Kalle Kurppa1,3,7. 1. Tampere Center for Child Health Research, Tampere University and Department of Paediatrics, Tampere University Hospital, Tampere, Finland. 2. University of Helsinki and Helsinki University Hospital, Children's Hospital, and Pediatric Research Center, Helsinki, Finland. 3. Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland. 4. Faculty of Social Sciences, Tampere University, Tampere, Finland. 5. Department of Internal Medicine, Tampere University Hospital, Tampere, Finland. 6. Celiac Disease Research Center, Tampere University, Tampere, Finland. 7. The University Consortium of Seinäjoki, Seinäjoki, Finland.
Abstract
BACKGROUND: Follow-up of coeliac disease is recommended to prevent complications associated with unsuccessful treatment. OBJECTIVE: The objective of this article is to evaluate the implementation and significance of long-term follow-up. METHODS: Medical data were collected from 585 and follow-up questionnaires sent to 559 current adult coeliac disease patients diagnosed in childhood. Diagnostic features and adulthood health outcomes were compared between those with and without adulthood follow-up. RESULTS: Of paediatric patients, 92% were followed up 6-24 months after diagnosis. A total of 235 adults responded to the questionnaires a median of 18 years after diagnosis, and 25% of them reported regular follow-up. They were diagnosed more recently than those without follow-up (median year 2001 vs 1995, p = 0.001), being otherwise comparable at diagnosis. Those with follow-up were less often smokers (5% vs 16%, p = 0.042) and relatives of coeliac patients (48% vs 66%, p = 0.018), and more often students (48% vs 28%, p = 0.005) and type 1 diabetics (19% vs 4%, p = 0.001). Lack of follow-up was not associated with complications, ongoing symptoms, poorer general health or dietary adherence. All completely non-adherent patients were without follow-up. CONCLUSIONS: Most coeliac disease patients diagnosed in childhood were not followed up according to recommendations in adulthood. The individual effect of this on long-term treatment outcomes varied markedly.
BACKGROUND: Follow-up of coeliac disease is recommended to prevent complications associated with unsuccessful treatment. OBJECTIVE: The objective of this article is to evaluate the implementation and significance of long-term follow-up. METHODS: Medical data were collected from 585 and follow-up questionnaires sent to 559 current adult coeliac diseasepatients diagnosed in childhood. Diagnostic features and adulthood health outcomes were compared between those with and without adulthood follow-up. RESULTS: Of paediatric patients, 92% were followed up 6-24 months after diagnosis. A total of 235 adults responded to the questionnaires a median of 18 years after diagnosis, and 25% of them reported regular follow-up. They were diagnosed more recently than those without follow-up (median year 2001 vs 1995, p = 0.001), being otherwise comparable at diagnosis. Those with follow-up were less often smokers (5% vs 16%, p = 0.042) and relatives of coeliac patients (48% vs 66%, p = 0.018), and more often students (48% vs 28%, p = 0.005) and type 1 diabetics (19% vs 4%, p = 0.001). Lack of follow-up was not associated with complications, ongoing symptoms, poorer general health or dietary adherence. All completely non-adherent patients were without follow-up. CONCLUSIONS: Most coeliac diseasepatients diagnosed in childhood were not followed up according to recommendations in adulthood. The individual effect of this on long-term treatment outcomes varied markedly.
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