Out-of-pocket Cost Burden in Pediatric Inflammatory Bowel Disease

Abstract

Background Pediatric inflammatory bowel disease (IBD) — consisting of Crohn’s disease (CD) and ulcerative colitis (UC) — can result in significant morbidity requiring frequent healthcare utilization. While it is known that the overall financial impact of pediatric IBD is significant, the direct out-of-pocket (OOP) cost burden on the parents of children with IBD has not been explored. We hypothesized that affected children with a more relapsing disease course and families in lower income strata, ineligible for need-based assistance programs, disparately absorb ongoing financial stress. Methods We completed a cross-sectional analysis among parents of children with IBD residing in California using an online HIPAA-secure Qualtrics survey. Multicenter recruitment occurred between December 4, 2013 and September 18, 2014 at the point-of-care from site investigators, informational flyers distributed at regional CCFA conferences, and social media campaigns equally-targeting Northern, Central, and Southern California. IBD-, patient-, and family-specific information were collected from the parents of pediatric IBD patients <18 years of age at time of study, carry a confirmed diagnosis of CD or UC, reside in and receive pediatric gastroenterology care in California, and do not have other chronic diseases requiring on-going medical care. Results We collected 150 unique surveys from parents of children with IBD (67 CD; 83 UC). The median patient age was 14 years for both CD and UC, with an overall 3.7 years (SD 2.8 years) difference between survey completion and time of IBD diagnosis. Annually, 63.6%, 28.6%, and 5.3% of families had an OOP cost burden >$500, >$1000, and >5000, respectively. Approximately one-third (36.0%) of patients had emergency department (ED) visits over the past year, with 59.2% of these patients spending >$500 on ED copays, including 11.1% who spent >$5,000. While 43.3% contributed <$500 on procedure and test costs, 20.0% spent >$2,000 in the past year. Families with household income between $50k–100k had a statistically significant probability (80.6%) of higher annual OOP costs than families with lower income <$50k (20.0%; P<0.0001) or higher income >$100k (64.6%; P<0.05). Multivariate analysis revealed that clinical variables associated with uncontrolled IBD states correlated to higher OOP cost burden. Annual OOP costs were more likely to be >$500 among patients who had increased spending on procedures and tests (OR 5.63, 95% CI 2.73 – 11.63), prednisone course required over the past year (OR 3.19, 95% CI 1.02 – 9.92), at least one ED visit for IBD symptoms (OR 2.84, 95% CI 1.33 – 6.06), at least 4 or more outpatient primary medical doctor (PMD) visits for IBD symptoms (OR 2.82, 95% CI 1.40 – 5.68), and history of 4 or more lifetime hospitalizations for acute IBD care (OR 2.60, 95% CI 1.13 – 5.96). Conclusions Previously undocumented, a high proportion of pediatric IBD families incur substantial OOP cost burden. Patients who are frequently in relapsing and uncontrolled IBD states require more a...

Phenotypic characteristics of pediatric inflammatory bowel disease in Japan: results from a multicenter registry

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“…IBD can have physical, psychological, and social impacts on a patient’s life [ 1 - 6 ]. These conditions affect millions of people globally and cause debilitating symptoms that impair function and quality of life [ 7 - 9 ]. The number of people with IBD is increasing worldwide, including in Asia [ 10 - 14 ], and up to a quarter of patients with IBD experience disease onset during childhood [ 15 ].…”

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The Impact of Inflammatory Bowel Disease in Canada 2018: Indirect Costs of IBD Care

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