Quantitative evaluation of a pediatric rheumatology transition program

Abstract

BackgroundTransition from pediatric to adult care can be a challenging process which leaves young people vulnerable to interruptions of care and worsening disease status. Efforts to improve transition processes and outcomes have included development of individualized transition plans, creation of transition clinics, and utilization of transition coordinators. Few interventions have assessed transition outcomes quantitatively.MethodsWe assessed transition outcome and satisfaction of a social worker-centered transition program in a pediatric rheumatology clinic. The social worker met with patients who were 16 years or older and their families, provided transition education materials, assisted patients in developing an individualized transition plan, assisted in making appointments with an adult rheumatologist at time of transfer of care, and followed up with patients to assess transition outcomes. Patients were contacted 6–8 months after initial appointment with the adult rheumatologist to assess whether they remained in the care of the adult provider. Participants then completed a questionnaire to rate their satisfaction with the transition program.Results210 adolescents and young adults participated in the transition program. Twenty-six similarly aged patients were eligible for transition services but did not participate in the program and were used as controls. Of the patients who participated in the program, 42 % were considered to have transitioned successfully to adult care compared to 23 % of controls (p-value = 0.002) of all patients. In the survey of satisfaction, 81 % of participants said that they were satisfied with the transition process.ConclusionsThis study shows that a social worker transition coordinator can significantly improve the rate of pediatric rheumatology patients who successfully transition to adult care. Furthermore, patients are largely satisfied with this process.

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

“…Policies and protocols should be agreed with all major stakeholders, including YP, families and all healthcare professionals and as equal partners;27 33 35 it is important to stress the need to include all specialists (and not just in rheumatology) and primary care physician(s) who are involved in the clinical care of YP with jRMD28 Hospital or institutional managers will have to agree to these policies to facilitate appropriate resources to support their implementation within the clinical departments. As a minimum, there must be a transition policy and the documents should be updated at least every 5 years.…”

Evaluating outpatient transition clinics: a mixed-methods study protocol

“…9 Although these studies found positive short-term health outcomes (better glycosylated haemoglobin (Hb1Ac) levels and less short-term complications) and follow-up rates, there is currently no evidence for (long-term) outcomes of TCs with regard to health outcomes, healthcare use, self-management and psychosocial functioning of young adults. Moreover, recent studies of TCs in other diagnostic groups did not include a controlled pre-post outcome evaluation, [19][20][21][22][23][24][25][26][27][28][29][30] and as such could not provide sound evidence on outcomes of TCs. In general, there is inconclusive evidence considering the effectiveness of transitional care.…”

Self‐efficacy did not predict the outcome of the transition to adult care in adolescents with inflammatory bowel disease

“…The outcome of transition has also been described in paediatric patients with other chronic diseases with success varying from 42 to 53% of patients . All these studies used a restricted definition of success, namely attending the first one or two visits in adult care.…”

“…In 2015, a ranking list with key elements and indicators of successful transition in general was published . This list, together with previous literature, supports the elements of the Transition Yourself Score . A qualitative evaluation by the patient was included because patient experiences are of essential importance, reflect continuity of care and should be taken into account .…”