Comprehensive assessment of patients with irritable bowel syndrome with constipation and chronic idiopathic constipation using deterministically linked administrative claims and patient reported data: the Chronic Constipation and IBS C Treatment and Outcomes Real World Research Platform (CONTOR)
Abstract Aims To characterize a US population of patients with irritable bowel syndrome with constipation (IBS C) or chronic idiopathic constipation (CIC) using CONTOR, a real world longitudinal research platform that deterministically linked administrative claims data with patient reported outcomes data among patients with these conditions. Methods Patients with IBS C or CIC were identified using diagnosis and treatment codes from administrative claims. Potential respondents received a mailed survey followed by 12 monthly online follow up surveys and 2 mailed diaries. Surveys collected symptom severity, treatment use, quality of life, productivity, and condition/treatment history. Comorbidities and healthcare costs/utilization were captured from claims data. Diaries collected symptoms, treatments, and clinical outcomes at baseline and 12 months. Data were linked to create a patient centric research platform. Results Baseline surveys were returned by 2,052 respondents (16.8% response rate) and retention rates throughout the study were high (64.8% 70.8% Most participants reported burdensome symptoms despite having complex treatment histories that included multiple treatments over many years. More than half (55.3% were dissatisfied with their treatment regimen; however, a higher proportion of those treated with prescription medications were satisfied. Limitations The study sample may have been biased by patients with difficult to treat symptoms as a result of prior authorization processes for IBS C/CIC prescriptions. Results may not be generalizable to uninsured or older populations because all participants had commercial insurance coverage. Conclusions By combining administrative claims and patient reported data over time, CONTOR afforded a deeper understanding of the IBS C/CIC patient experience than could be achieved with 1 data source alone; for example, participants self reported burdensome symptoms and treatment dissatisfaction despite making few treatment changes, highlighting an opportunity to improve patient management. This patient centric approach to understanding real world experience and management of a chronic condition could be leveraged for other conditions in which the patient experience is not adequately captured by standardized data sources.
Journal of medical economics