Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes

Abstract

Transition-oriented PEPs can have differential effects in different patient groups. However, this needs further longitudinal investigations. What is Known: • To date, evidence has accumulated concerning the effectiveness of patient education programs (PEPs) in pediatric health care for chronic conditions such as type 1 diabetes, asthma, atopic dermatitis, or obesity but is less documented in inflammatory bowel disease (IBD). In particular, PEPs in the transition period have not been investigated in youth with IBD. • The current study focuses on evaluating a PEP for transition preparation and management designed to be generically used across different chronic conditions since many aspects of managing chronic conditions share commonalities across conditions. The 2-day workshop included condition-specific modules adapted to the specific medical needs but was otherwise similar in quality and organization among different conditions. What is New: • The transition-oriented PEP was effective in enhancing self-management and transition management skills in both patients with IBD and diabetes; however, effects were higher in youth with IBD. A significant impact of the intervention on patients' QoL compared to the control group was only identified in youth with IBD. • We recommend that patients with IBD have access to PEP as a standard treatment as well as to a transition program during the course of illness.

A Short Form of the Child/Youth Health Care Questionnaire on Satisfaction, Utilization, and Needs in Children and Adolescents with a Chronic Condition (CHC-SUN-SF/YHC-SUN-SF)

“…According to the steps in short-form development recommended in the literature [22,23], data analyses for item selection and instrument validation were performed based on independent samples. (i) For item selection purposes, samples from the multicenter DIS-ABKIDS [24] and TRANSITION [25] projects served as data bases ("extraction samples"), the DISABKIDS study sample for the parents report version and the TRANSITION study sample for the self-report version. (ii) For instrument validation purposes, the sample of the multicenter MODUS project [26] was used ("validation sample"), as in this MODUS study sample, for the first time, both short-form measures (CHC-/YHC-SUN-SF) were simultaneously applied to all study participants and their parents.…”

Effect of joint transition visits on quality of life in adolescents with inflammatory bowel diseases: a protocol for a prospective, randomised, multicentre, controlled trial (TRANS-IBD)

“…8 13-17 However, patient education programmes and the coordinating role of IBD nurses are also considered to be beneficial in structured transition interventions. [18][19][20][21][22][23] Need for a trial Since the quality of evidence proved to be very low for each transitional outcome, further trials are needed to determine the active ingredient and the long-term impact of these interventions. 7 Joint visits were mainly held in the presence of a paediatric and an adult gastroenterologist (PGE and AGE, respectively), hence the real impact of the personal attendance of the AGE on the whole transition process is questionable.…”

A Cross-Sectional Survey on the Transitional Care of Adolescents with Inflammatory Bowel Disease in Hungary

“…Since structured transition interventions have started to be incorporated into the clinical practice in the care of inflammatory bowel disease (IBD), several beneficial effects of these interventions have been reported, such as improved health-related quality of life, better diseasespecific knowledge, improved medication adherence, and reduced non-attendance rates after the transfer (Cole et al, 2015;Schmidt et al, 2016;Schmidt et al, 2018;Vaz et al, 2016;Yerushalmy-Feler et al, 2017). The implementation of joint transition visits, patient education programmes, promotion of adolescents' independence by teaching appropriate self-advocacy skills, and assessment of transition readiness with validated tools are recommended according to the current guidelines (Brooks et al, 2017;Eros et al, 2019;van den Brink et al, 2019;van Rheenen et al, 2017).…”