scholarly journals Transitioning from paediatric to adult rheumatological healthcare: English summary of the Japanese Transition Support Guide

2021 ◽  
Author(s):  
Masaaki Mori ◽  
Shinji Akioka ◽  
Toru Igarashi ◽  
Yuzaburo Inoue ◽  
Hiroaki Umebayashi ◽  
...  
Keyword(s):  
Transitional Care ◽  
English Summary ◽  
Childhood Onset ◽  
Adult Care ◽  
Optimal Outcomes ◽  
International Attention ◽  
Clinical Questions ◽  
Essential Knowledge ◽  
Rheumatological Diseases ◽  
Adult Caregiver

ABSTRACT Issues related to transitioning from paediatric to adult healthcare are currently receiving international attention. In Japan, 1000 patients with childhood-onset chronic rheumatological diseases reach adulthood every year and require transition from care by paediatric to care by adult rheumatologists. Here, we propose a guide for the latter, wherein the adult caregiver poses the clinical questions about transitional support that they need to have answered, and the paediatric caregiver mainly compiles the plans for the transition. To formulate the guide, we sought comments from both the Japan College of Rheumatology and the Pediatric Rheumatology Association of Japan and obtained their approval. Here, we present the outcome of this consultation in the form of a Guide for Supporting Transitional Care, aiming to provide essential knowledge to physicians in the fields of adult internal medicine and orthopaedics who may be involved in treating patients with rheumatic disease during the transition from paediatric to adult care. The features of transitional support that are common for patients with various different rheumatic diseases are presented in this guide, with the aim of informing policy and strategies to deliver optimal outcomes in transitional care by non-paediatric rheumatologists.

scholarly journals Childhood onset GH deficiency: re-evaluation at the point of transition to adult care

2015 ◽  
Author(s):  
Mariana Grace ◽  
Stephen O'Riordan ◽  
Rose Morissey ◽  
Mary Stapeton ◽  
Susan O'Connell
Keyword(s):  
Gh Deficiency ◽  
Transition To Adult Care ◽  
Childhood Onset ◽  
Adult Care

scholarly journals Patients’ attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review

Rheumatology ◽  
2020 ◽  
Vol 59 (12) ◽  
pp. 3737-3750 ◽  
Author(s):  
Ayano Kelly ◽  
Fiona Niddrie ◽  
David J Tunnicliffe ◽  
Andrea Matus Gonzalez ◽  
Camilla Hanson ◽  
...  
Keyword(s):  
Young People ◽  
Parental Involvement ◽  
Parental Support ◽  
Sense Of Belonging ◽  
Medical Information ◽  
Transitional Care ◽  
Adult Care ◽  
Juvenile Onset ◽  
Parental Presence ◽  
Rheumatic Conditions

Abstract Objectives We aimed to describe patients’ attitudes and experiences of transition from paediatric to adult healthcare in rheumatology to inform patient-centred transitional care programmes. Methods We searched MEDLINE, EMBASE, PsycINFO and CINAHL to August 2019 and used thematic synthesis to analyse the findings. Results From 26 studies involving 451 people with juvenile-onset rheumatic conditions we identified six themes: a sense of belonging (comfort in familiarity, connectedness in shared experiences, reassurance in being with others of a similar age, desire for normality and acceptance); preparedness for sudden changes (confidence through guided introductions to the adult environment, rapport from continuity of care, security in a reliable point of contact, minimizing lifestyle disruptions); abandonment and fear of the unknown (abrupt and forced independence, ill-equipped to hand over medical information, shocked by meeting adults with visible damage and disability, vulnerability in the loss of privacy); anonymous and dismissed in adult care (deprived of human focus, sterile and uninviting environment, disregard of debilitating pain and fatigue); quest for autonomy (controlled and patronized in the paediatric environment, liberated from the authority of others, freedom to communicate openly); and tensions in parental involvement (overshadowed by parental presence, guilt of excluding parents, reluctant withdrawal of parental support). Conclusion Young people feel dismissed, abandoned, ill-prepared and out of control during transition. However, successful transition can be supported by preparing for changes, creating a sense of belonging and negotiating parental involvement and autonomy. Incorporating patient-identified priorities into transitional services may improve satisfaction and outcomes in young people with juvenile-onset rheumatic conditions.

Consensus of the Spanish society of pediatric rheumatology for transition management from pediatric to adult care in rheumatic patients with childhood onset

2015 ◽  
Vol 35 (10) ◽  
pp. 1615-1624 ◽  
Author(s):  
Inmaculada Calvo ◽  
Jordi Antón ◽  
Sagrario Bustabad ◽  
Marisol Camacho ◽  
Jaime de Inocencio ◽  
...  
Keyword(s):  
Pediatric Rheumatology ◽  
Transition Management ◽  
Childhood Onset ◽  
Adult Care ◽  
Spanish Society ◽  
Rheumatic Patients

Disease activity and health-care utilization among young adults with childhood-onset lupus transitioning to adult care: data from the Pediatric Lupus Outcomes Study

Lupus ◽  
2020 ◽  
Vol 29 (10) ◽  
pp. 1206-1215
Author(s):  
Sara L Haro ◽  
Erica F Lawson ◽  
Aimee O Hersh
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Health Care Utilization ◽  
Disease Activity ◽  
Care Utilization ◽  
Childhood Onset ◽  
Adult Care ◽  
Medication Usage ◽  
Pediatric Lupus ◽  
Outcomes Study

Background Individuals with childhood-onset systemic lupus erythematosus (cSLE) must transfer from pediatric to adult care. The goal of this study was to examine disease activity and health-care utilization among young adults with cSLE who are undergoing or have recently completed the transfer to adult care. Methods The Pediatric Lupus Outcomes Study (PLOS) is a prospective longitudinal cohort study of young adults aged 18–30 diagnosed with cSLE. We conducted a cross-sectional analysis comparing 47 participants under the care of pediatric rheumatologists to 38 who had completed transfer to adult care. Demographics, disease manifestations, health- care utilization and transition readiness were compared between groups. Results Those in the post-transfer group had significantly lower medication usage and were less likely to have seen a rheumatologist in the past year. Disease manifestations, flare rates, and hospitalizations were similar between groups. Nearly a quarter of patients who had transferred to adult care reported difficulties with the process. Conclusion Post-transfer patients had lower health-care utilization as evidenced by less medication usage and lack of rheumatology follow-up, in spite of the fact that disease activity was similar in both groups. Future studies will assess longitudinal changes in disease activity and damage in this population.

scholarly journals Transition Readiness in Adolescents and Young Adults With Chronic Rheumatic Disease in Oman: Today’s Needs and Future Challenges

2022 ◽  
Author(s):  
Reem Abdwani ◽  
Rumaitha Al Sabri ◽  
Zawan Zawan Alhasni ◽  
Seyad Rizvi ◽  
Humaid Al Wahshi ◽  
...  
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Rheumatic Diseases ◽  
Adolescents And Young Adults ◽  
Age Group ◽  
Health Providers ◽  
Childhood Onset ◽  
Adult Care ◽  
Transition Readiness ◽  
The Mean

Abstract Introduction:In Oman, the “transfer” healthcare rather than the “transition” of health care of adolescents to adult care occurs at a young age, like many other GCC countries for cultural reasons. In order to address this concern, this study was conducted to determine the transition readiness skills of adolescents and young adults with childhood onset rheumatic diseases using a cross-cultural adaptation of the UNC TRxANSITION scale.Methods: We used a professionally translated/back translated, provider-administered UNC TRxANSITION Scale. This 32-question scale measures HCT in ten domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and looking for new health providers. The maximum transitional score of 10, was categorized as low (1-4), moderate (4 - 7) and high (7 -10) transitional readiness scores.Results:We enrolled 81 Omani adolescents and young adults (AYA) with chronic childhood onset rheumatic diseases. The cohort consisted of 79% females, with mean age of 15.8 years (± 3.53) and mean disease duration of 6.95 years (± 4.83). Our cohort's overall mean score is low 5.22 (±1.68). Only 14.8% of the cohort achieved a high transition score ≥7). Significant direct relationship was observed between age and the mean transition readiness score (r = .533, P < .001). The mean transition readiness score in the younger age group (10-13 years) was 4.07 (±1.29), the middle age group (14-18 years) was 5.43 ( ±1.27), while the older age group (19-21 year), was 6.12 ( ±1.81), Mean transition score of youngest age group was found to be significantly lower than the other two age groups (p =.003).Conclusion:Overall, the transition readiness of AYA in Oman is low compared to other western countries indicating the need to initiate a health care transition preparation program for patients with chronic diseases across the country. In addition, we need to establish regional guidelines to address the transitional age policy to be in line to international recommendations.

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