The Burden of Coeliac Disease (Pehmeäkantinen kirja)

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Coeliac disease is heavily underdiagnosed and delay in diagnosis is typically several years. Untreated symptomatic disease is associated with increased morbidity, much of which can be prevented or reversed by treatment with a gluten-free diet in symptomatic patients. Whether a similar health gain can be achieved in screen-detected patients remains unclear. It has been suggested that undiagnosed coeliac disease causes an increased burden on the health care system as consumption of health care services might be increased among undiagnosed patients but be reduced on treatment. The aims of this study were to gain a comprehensive understanding of the burden of illness related to coeliac disease from the standpoint of affected individuals, the health care system and society, and to ascertain the impact of treatment with a gluten-free diet on this burden.

This dissertation comprised four prospective studies. In study I, health-related quality of life was evaluated with the Psychological General Well-Being (PGWB) questionnaire and the results compared to those of 110 adult non-coeliac controls at diagnosis and in the follow-up.

The patients were asked to grade their subjective health status and concern about their heath in general. Study II assessed patients' thoughts of coeliac disease, how the diagnosis was established, and treatment with a gluten-free diet. In addition, they indicated their special wishes or needs related to the disease. Initial body mass index (BMI) and the impact of a gluten-free diet on it, in addition to items explaining favourable or poor BMI outcome were assessed in study III. BMI values at diagnosis and on dietary treatment were compared to those of a random sample of the general population during the same periods. Study IV measured use of health care services, consumption of pharmaceutical agents and number of days of sickness absence from work in the years prior to and following the diagnosis to establish the possible effect of dietary treatment on these parameters. The number of consultations with a physician and days of sickness absence were compared to those in a sample of the general population.
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