Challenges for Adolescents With Congenital Heart Defects/Chronic Rheumatic Heart Disease and What They Need: Perspectives From Patients, Parents and Health Care Providers at the Institut Jantung Negara (National Heart Institute), Malaysia

ObjectivesThis study aimed to describe the experiences and challenges faced by adolescents with moderate and severe congenital heart defects (CHD) or Chronic Rheumatic Heart Disease (CRHD) and to determine their needs in order to develop an Adolescent Transition Psychoeducational Program.MethodsThe study involved seven adolescents with moderate to severe CHD/CRHD, six parents, and four health care providers in Institute Jantung Negara (National Heart Institute). Participants were invited for a semi-structured interview. Qualitative data were analyzed through the Atlas.ti 7 program using triangulation methods.Results/conclusionsWe identified five themes concerning the experience and challenges of adolescents relating to: (1) emotional/psychological issues; (2) the progress of the illness; (3) relationship issues; (4) future preparation; and, (5) school and community. These themes were identified together with eleven subcategories. The staff expressed support for the development of the Adolescent Transition Psychoeducational Program and adolescents with CHD/CRHD and their parents were willing to participate in the program if their schedule allowed. Their suggestions to improve the program were classified into six categories, with two main themes, (1) the self-management of illness in life and the future; and, (2) social support. In conclusion, the findings from the situation analysis act as a basis for a conceptual framework that will contribute to the development of an Adolescent Transition Psychoeducational Program that aims to empower adolescents with CHD/CRHD, enabling them to manage challenges during the transition phase between childhood and adulthood.

Facet-Level Personality Development in the Transition to Adolescence: Maturity, Disruption, and Gender Differences

The transition to adolescence is marked by enormous change in social, biological, and personality development. Although accumulating evidence has offered insight into the nature of higher-order personality trait development during this period, much less is known about the development of lower-order personality traits, or “facets”. The current study employed a cohort- sequential longitudinal design to examine domain- and facet-level trajectories for mother- reported personality traits during the early adolescent transition. Personality trait domains and facets were assessed with the Inventory of Child Individual Differences – Short Form (Deal et al., 2007). Participants were 440 children followed at four annual timepoints from middle childhood (MAge = 9.97, SD = 0.81) to early adolescence (MAge = 13.11, SD = 0.84). Results of latent growth curve models showed substantial facet-level personality stability in this period, as well as small to moderate linear change in 13 of 15 facets. Gender differences in change were evident for 9 facets. Overall patterns suggested consistent increases in agreeableness facets with null to small gender differences. Neuroticism and openness to experience facet change was heterogeneous within each domain, but patterns were similar for boys and girls. Extraversion primarily decreased, though the magnitude and direction of change differed between facets and genders. Conscientiousness increased across all facets, but only among girls. These findings overall demonstrate a high degree of developmental consistency in facets within each domain as well as some notable differences. Further, this study contributes to a small and somewhat mixed evidence base for current theories of adolescent personality development.

AB1000 EFFECT OF THE LIPAT KALINGA ADOLESCENT TRANSITION CLINIC ON FILIPINO ADOLESCENTS WITH RHEUMATIC DISEASES

Background:Establishing a transition program is important in bridging the gap between pediatric and adult healthcare especially in patients with chronic diseases. The Division of Pediatric Rheumatology of the Philippine General Hospital (PGH) established the Lipat Kalinga Adolescent Transition Clinic (LKATC) to help in the transfer from pediatric to adult healthcare by providing the support and guidance needed through education and reinforcement of self-management skills. This study is an assessment of the effect of the LKATC on the transition readiness of Filipino adolescents with rheumatic diseases at the PGH.Objectives:To assess the effect of the LKATC program on Filipino adolescent patients with rheumatic diseasesMethods:This is a mixed-method study design done at the Philippine General Hospital. A retrospective descriptive before and after study was conducted along with a focus group discussion (FGD). The participants were pediatric rheumatology patients enrolled at the LKATC from May,2018 to April,2019. Comparison of the pre and post University of North Carolina (UNC) TRxANSITION scale (Filipino version) overall score and domains was done and facilitation of an FGD to elicit barriers and facilitating factors for the effective implementation of the LKATC. The FGD used a predefined discussion guide based on literature review and was done by a trained facilitator.Results:We evaluated a total of 17 adolescent patients with rheumatologic diseases. Comparing the pre-intervention and post-intervention test scores, statistically significant increases were noted in several domains. Health transitional skills of these adolescents were noted to improve in terms of total score, medication, nutrition, self-management, informed reproduction, trade and school issues, insurance issues, and new health providers. There was no significant improvement in the type of illness, adherence and ongoing support.Four patients who were enrolled at the LKATC and who attended at least 5 sessions participated in the FGD. The barrier themes elicited were 1. Expectation and beliefs regarding adult healthcare, 2. Different doctor-patient relationship, 3. Logistical problems. The facilitating themes elicited were 1. Familiarization, 2. Peer support, 3. Communication.Conclusion:This study showed the effects of an adolescent transition clinic program in Filipino adolescent with rheumatic disease. Significant increase in the overall UNC TRxANSITION score as well as majority of the scores per domains were seen. Barriers and facilitating factors affecting the transition process elicited during a focus group discussion were also presented. This study provided baseline data on the importance of establishing an adolescent transition clinic for patients with chronic disease in the local setting.References:[1]Foster, H. et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis 2016;0:1-8.[2]Alfiler, CA, Llanto, EA et al. Adolescent Pediatric Kidney Patients Transitioned to Adult Health Care Services through the Philippine General Hospital Transition Program. Acta Medica Philipina Vol 46 No. 4 2012-Vol 47 No. 1 2013Disclosure of Interests:None declared