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Epidemiology, validation, and clinical characteristics of inflammatory bowel disease: the ABIS birth cohort study
Malin Östensson1, Olle Björkqvist2, Annie Guo3
1Bioinformatics and Data Centre, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Insights
This study found a 0.74% cumulative incidence of inflammatory bowel disease (IBD) in Swedish children. Register-based IBD definitions are highly valid for cohort studies.
Area of Science:
- Pediatric gastroenterology
- Epidemiology
- Biostatistics
Background:
- Birth cohort studies offer insights into early-life determinants of inflammatory bowel disease (IBD).
- Register-based data often lack clinical details and rely on diagnostic algorithms.
- The All Babies in Southeast Sweden (ABIS) cohort was used to assess IBD register data validity.
Purpose of the Study:
- To examine the validity of a register-based definition for IBD.
- To determine the incidence and cumulative incidence of IBD in a Swedish birth cohort.
- To describe the clinical and therapeutic characteristics of IBD at diagnosis.
Main Methods:
- Followed 16,223 children from birth (1997-1999) to 2020 for IBD diagnoses using the Swedish National Patient Register (NPR).
- Calculated IBD incidence and cumulative incidence.
- Conducted a medical record review for cases diagnosed by 2017 to determine the positive predictive value (PPV) and clinical characteristics.
Main Results:
- By 2020, 113 participants (0.74%) had a register-based IBD diagnosis, with an incidence of 31.3 per 100,000 person-years.
- The PPV for the register-based IBD definition was 93% (57 out of 61 reviewed cases).
- Biologics were more common in newly diagnosed Crohn's disease (CD) than ulcerative colitis (UC); median fecal calprotectin decreased significantly over time.
Conclusions:
- The cumulative incidence of IBD in this Swedish population-based sample was 0.74%.
- The register-based definition of IBD demonstrated high validity.
- Register data is suitable for identifying IBD patients in large cohort studies.
Background:
Birth cohort studies with linked register-based data on inflammatory bowel disease (IBD) provide opportunities to prospectively study early-life determinants of the disease. However, register-based data often lack information on clinical characteristics and rely on diagnostic algorithms. Within the All Babies in Southeast Sweden (ABIS) cohort, we examined the validity of a register-based definition of IBD, its incidence, and clinical and therapeutic characteristics at diagnosis.
Methods:
We followed 16,223 children from birth (1997-1999) until the end of 2020 for the diagnosis of IBD as defined by a minimum of two diagnostic codes for IBD in the Swedish National Patient Register (NPR). We described the incidence and cumulative incidence of IBD. Through a medical record review of cases diagnosed by the end of 2017, we examined the positive predictive value (PPV) for IBD and described its clinical characteristics and treatment.
Results:
By 2020, at an average age of 22.2 years, 113 participants (0.74%, 95% confidence interval [CI] = 0.61-0.89) had a register-based diagnosis of IBD, corresponding to an incidence of 31.3 per 100,000 person-years of follow-up; the incidence for Crohn's disease (CD) was 11.1 per 100,000 person-years and 15.8 for ulcerative colitis (UC). Of 77 participants with a register-based definition of IBD by the end of 2017, medical records were identified for 61 participants, of whom 57 had true IBD (PPV = 93%; 95%CI = 0.87-1.00). While oral 5-aminosalicylic acid treatment was equally common in newly diagnosed CD and UC patients, biologics were more often used for newly diagnosed CD. The median faecal calprotectin levels were 1206 mg/kg at diagnosis and 93 mg/kg at the last follow-up (P < 0.001).
Conclusions:
In this population-based sample of Swedish children and young adults the cumulative IBD incidence was 0.74. The validity of register-based definition of IBD was high and supports using such data to identify IBD patients in cohort studies.
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