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Consensus report outlines transition from pediatric to adult care for celiac disease
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An international consensus report published in Gut provides recommendations for the transition of care from childhood to adulthood in celiac disease.
“Generally, the transition from pediatric to adult care should be a collaborative process involving patients, their parents or caregivers, the physician and the dietician,” Jonas F. Ludvigsson, MD, PhD, from Karolinska Institutet in Sweden, and colleagues wrote.
Jonas F. Ludvigsson
Seventeen physicians from ten countries — including Peter H. R. Green, MD, from Columbia University, and Joseph A. Murray, MD, from the Mayo Clinic — and two representatives from patient organizations reviewed relevant literature published up to September 2015 to develop recommendations for managing celiac disease in adolescents and young adults, and for providing optimal care during the transition into adulthood. They also used GRADE criteria to rate the quality of evidence informing their recommendations.
The group recommends that responsibility for self-care should be gradually transferred to adolescent patients.
“Both the family and the adolescent patient should be at the center of transition, and the function of the clinician is to balance the parents’ authority and the need for autonomy in the adolescent,” they wrote.
Peter H. R. Green
Joseph A. Murray
While acknowledging cultural and social differences, the group agreed with a joint statement from three physician organizations that the physician should start a discussion about transition when the patient is 12-13 years old and develop a transition plan at 14-15 years so the actual transfer of responsibility can occur when the patient is at least 18 years old.
Moreover, they recommend the pediatrician should help to find “a concerned and capable” adult physician to prevent “medical dropout” (for which adolescents with celiac disease are at risk) due to patient impressions of the provider.
The actual transition “should be structured” and should minimally include “written information on the base of diagnosis, follow-up, anthropometric data, comorbidities and dietary compliance,” they wrote. Importantly, adherence to the gluten-free diet and the consequences of non-adherence should be essential to the discussion in a transition setting.
Finally, the group recommends that routine small intestinal biopsy is not required to reconfirm a diagnosis of celiac disease made in childhood according to ESPGHAN or NASPGHAN guidelines, and that HLA testing can be used to rule out celiac disease for cases in which the diagnosis is unclear.
They concluded that further research is needed to evaluate different models of transition, and to “identify and remove barriers to transition.” – by Adam Leitenberger
Disclosures: Green reports he is on the scientific advisory board for Alvine and ImmusanT. Murray reports he is a consultant for Alba, Alvine, Flamentera, 2GPharma, Boehringer-Ingelheim and ImmusanT. Please see the full report for a list of all other researchers’ relevant financial disclosures.
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