Burden of illness and use of health care services before and after celiac disease diagnosis in children.

OBJECTIVES: Prevalence of celiac disease in children is approximately 1%, but most patients remain unrecognized by reason of variable clinical presentation. Undetected patients may have an increased burden of illness and use of health care services because of nonspecific complaints. We investigated these issues prospectively in newly detected patients with celiac disease before and after diagnosis in a large nationwide cohort of children. METHODS: A validated questionnaire was sent to consecutive families whose children had been diagnosed as having celiac disease within 1 year. The survey contained questions about the use of medical consultations, on-demand drugs, vitamins and herbal products, children's absenteeism from day care or school and, parents' work absenteeism. A follow-up questionnaire was sent after 1 year of receiving a gluten-free diet. RESULTS: A total of 132 families responded. A total of 44 children were diagnosed because of gastrointestinal and 88 because of extraintestinal symptoms or by risk-group screening. On treatment, outpatient visits to primary health care decreased from a mean of 3.0 to 1.3 visits per year (P < 0.001), the number of hospitalizations from 0.2 to 0.1 (P = 0.008), and antibiotic prescriptions from 1.0 to 0.5/year (P < 0.001). Visits to secondary and tertiary health care increased from 0.6 to 1.4 (P < 0.001), mostly for celiac surveillance. Use of vitamins, micronutrients, and herbal products increased from 7.3 to 10.2 pills per month (P = 0.028). CONCLUSIONS: Implementation of a gluten-free diet resulted in reduced use of health care services and antibiotic prescriptions in children. Our findings support active case-finding and risk-group screening for celiac disease.

Use of health care services and pharmaceutical agents in coeliac disease: a prospective nationwide study.

BACKGROUND: Approximately 1% of the population suffer from coeliac disease. However, the disease is heavily underdiagnosed. Unexplained symptoms may lead to incremented medical consultations and productivity losses. The aim here was to estimate the possible concealed burden of untreated coeliac disease and the effects of a gluten-free diet. METHODS: A nationwide cohort of 700 newly detected adult coeliac patients were prospectively evaluated. Health care service use and sickness absence from work during the year before diagnosis were compared with those in the general population; the data obtained from an earlier study. Additionally, the effect of one year on dietary treatment on the aforementioned parameters and on consumption of pharmaceutical agents was assessed. RESULTS: Untreated coeliac patients used primary health care services more frequently than the general population. On a gluten-free diet, visits to primary care decreased significantly from a mean 3.6 to 2.3. The consumption of medicines for dyspepsia (from 3.7 to 2.4 pills/month) and painkillers (6.8-5.5 pills/month) and the number of antibiotic courses (0.6-0.5 prescriptions/year) was reduced. There were no changes in hospitalizations, outpatient visits to secondary and tertiary care, use of other medical services, or sickness absence, but the consumption of nutritional supplements increased on treatment. CONCLUSIONS: Coeliac disease was associated with excessive health care service use and consumption of drugs before diagnosis. Dietary treatment resulted in a diminished burden to the health care system and lower use of on-demand medicines and antibiotic treatment. The results support an augmented diagnostic approach to reduce underdiagnosis of coeliac disease. TRIAL REGISTRATION: ClinicalTrials.gov NCT01145287.

Burden of illness in screen-detected children with celiac disease and their families.

OBJECTIVES: Because of a variable clinical picture, most children with celiac disease remain unrecognized without active serologic screening. Because, however, many patients are asymptomatic, the justification for screening remains unclear. We assessed health and well-being and the effect of a 1-year gluten-free diet in a nationwide cohort of children with celiac disease detected by screening in at-risk groups. METHODS: A total of 222 newly detected children received a validated questionnaire covering aspects of the burden caused by the undiagnosed celiac disease. After 1 year, adherence to the diet and difficulties attending this, attitudes toward and effects of disease and diet on daily life, and parents' satisfaction with the diagnosis were inquired about. The children's health and parents' concern for it were asked about at diagnosis and on treatment. The outcomes of screen-detected children were compared with those of children diagnosed on the basis of clinical symptoms. RESULTS: Forty-three screen-detected and 88 symptom-detected children responded. Also, 65% of the screen-detected patients experienced symptoms; these, however, being less troublesome and of shorter duration than in symptom-detected subjects. There were no differences between the groups in dietary adherence (71% vs 84% strict diet), management of the diet (80% vs 80%), alleviation of symptoms (78% vs 86%), and improvement in daily life (73% vs 69%), or in satisfaction with the diagnosis (93% vs 88%). Improved health and reduced parental concern were observed in both groups. CONCLUSIONS: Screen-detected children with celiac disease can attain satisfactory dietary adherence and benefit from treatment similarly to symptom-detected patients. The results support intensified screening for celiac disease in at-risk children.

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

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.