Concerns, Barriers, and Recommendations to Improve Transition from Pediatric to Adult IBD Care

Abstract

Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.

<p>Pre-Transition Readiness in Adolescents and Young Adults with Four Chronic Medical Conditions in South East Nigeria – An African Perspective to Adolescent Transition</p>

“…Based on their respective population in the clinics, we recruited consecutively the proportionate sample size required from the various clinics: 63, 39, 36 and 23 from, HIV, sickle cell anaemia, asthma, nephrology clinics, respectively. To collect data on transition readiness, the validated intervieweradministered Self-management and Transition to Adulthood with Treatment (STARx) questionnaire [15][16][17] was pretested and found to have good internal consistency (Cronbach's alpha 0.8), and was used via intervieweradministered survey. The STARx questionnaire also has external validity meaning that it can be applied to make deductions outside the context of children with asthma, sickle cell, nephrotic syndrome and HIV disease as it has been applied across a wide range of several other chronic conditions and found to be a sound tool that informed decisions for those chronic conditions.…”

“…The STARx questionnaire also has external validity meaning that it can be applied to make deductions outside the context of children with asthma, sickle cell, nephrotic syndrome and HIV disease as it has been applied across a wide range of several other chronic conditions and found to be a sound tool that informed decisions for those chronic conditions. [15][16][17][18][19][20] The STARx questionnaire has a total of 18 questions with three subdomains. The subdomains contain nine questions on Self-Management methods which includes questions like: How easy or hard is it to take your medicines like you are supposed to?…”

Transition from pediatric to adult medical care – A survey in young persons with inflammatory bowel disease

“…Transition should be considered a process rather than a point in time, in analogy to the psychosocial maturation process underlying the patient’s growing self-dependence. Readiness to transfer is a complex challenge involving, beside patients, parents and providers, a number of systemic and context issues [5–8]. Recommendations on how to prepare for transition address age groups from as young as 11 to 13 years [9].…”

“…Affective problems and delayed psychosocial development may be a consequence [18–20]. Various barriers to successful transition have been identified, mostly relating to insufficient self-efficacy in the young patients [5, 8, 14, 21–26]. …”

“…For example, pediatricians are described to be more family centered and to take more time, as compared to adult service providers who may expect more autonomy on the part of the patient and typically have less office time available for individual patients [17, 27, 28]. This may lead to substantial anxiety in the young person (and parents) preceding transfer to adult care, relating to perceptions of lower quality care from adult providers [8, 12, 29, 30]. However, there has been little objective evidence so far to support substantial differences between pediatric and adult gastroenterologists [13, 31].…”