Norelle R Reilly1,2, Marissa L Hammer1, Jonas F Ludvigsson3,4,5, Peter H Green2,5. 1. Department of Pediatrics. 2. Celiac Disease Center, Columbia University Medical Center, New York, NY. 3. Department Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm. 4. Department of Pediatrics, Örebro University Hospital, Örebro University, Örebro, Sweden. 5. Department of Medicine, Columbia University College of Physicians and Surgeons, New York, NY.
Abstract
OBJECTIVES: Transition from pediatric to adult care for individuals with chronic conditions is important to prevent gaps in care, though this has not been well-studied in celiac disease (CD). The aim of this study was to discern rates and predictors of successful transition of care for young adults with childhood-diagnosed CD. METHODS: An anonymous 21-question online survey was sent to individuals on our center's email contact list seeking responses from those ages 18 to 25 years diagnosed with CD before age 18 years. Information collected included method of diagnosis, demographics, CD-related care, reasons for not seeking care, and symptoms. RESULTS: Respondents (n = 98), 70% women, had a median age of 21 years (IQR 19--23 years). The majority were full or part-time students (67%; 95% CI 59%-77%). Only 31% of respondents had successfully transitioned to an adult CD provider. Some 37% (95% CI 29%-48%) were not receiving any CD medical care. An older age at diagnosis was associated with successful transition to adult gastroenterology (P = 0.002) as well as with greater symptom scores (P = 0.002). Receiving a referral for ongoing adult CD care predicted successful transition to an adult provider (odds ratio [OR] 3.92, 95% CI 1.58-9.72). CONCLUSIONS: Transition of care for young adults with CD is inconsistent, particularly among asymptomatic patients. Receipt of a referral for an adult provider significantly improves follow-up rates.
OBJECTIVES: Transition from pediatric to adult care for individuals with chronic conditions is important to prevent gaps in care, though this has not been well-studied in celiac disease (CD). The aim of this study was to discern rates and predictors of successful transition of care for young adults with childhood-diagnosed CD. METHODS: An anonymous 21-question online survey was sent to individuals on our center's email contact list seeking responses from those ages 18 to 25 years diagnosed with CD before age 18 years. Information collected included method of diagnosis, demographics, CD-related care, reasons for not seeking care, and symptoms. RESULTS: Respondents (n = 98), 70% women, had a median age of 21 years (IQR 19--23 years). The majority were full or part-time students (67%; 95% CI 59%-77%). Only 31% of respondents had successfully transitioned to an adult CD provider. Some 37% (95% CI 29%-48%) were not receiving any CD medical care. An older age at diagnosis was associated with successful transition to adult gastroenterology (P = 0.002) as well as with greater symptom scores (P = 0.002). Receiving a referral for ongoing adult CD care predicted successful transition to an adult provider (odds ratio [OR] 3.92, 95% CI 1.58-9.72). CONCLUSIONS: Transition of care for young adults with CD is inconsistent, particularly among asymptomatic patients. Receipt of a referral for an adult provider significantly improves follow-up rates.