Differences in Healthcare Transition Views, Practices, and Barriers Among North American Pediatric Rheumatology Clinicians From 2010 to 2018

Johnson, Kristen; Edens, Cuoghi; Sadun, Rebecca E.; Chira, Peter; Hersh, Aimee O.; Goh, Y. Ingrid; Hui-Yuen, Joyce; Singer, Nora G.; Spiegel, Lynn; Stinson, Jennifer; White, Patience H.; Lawson, Erica

doi:10.3899/jrheum.200196

Cited by 13 publications

(7 citation statements)

References 47 publications

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“…Of the 217/398 members responded, 63% did not consistently address healthcare transition with patients, only 17% had a transition policy and only 31% used a transitional tool, while a dedicated transition clinic was available in 23% of centers. In contrast to our study, the most common age to begin transition planning was 15-17 (49%), and most providers transferred patients at age 21 or older (75%) (33).…”

Section: Resultscontrasting

confidence: 99%

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

Abdwani

Sabri

Alhasni

et al. 2022

Preprint

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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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Section: Resultscontrasting

confidence: 99%

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

Abdwani

Sabri

Alhasni

et al. 2022

Preprint

View full text Add to dashboard Cite

show abstract

Section: Discussioncontrasting

confidence: 70%

Transition readiness in adolescents and young adults with chronic rheumatic disease in Oman: today’s needs and future challenges

et al. 2022

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Introduction In Oman, 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 10 domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and identification of 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 transfer and transition policies to be in line to international recommendations. As transition continues after transfer, and is preferably guided by adolescent developmental status rather than chronological age, it would be preferable to refer to the transition and transfer policies 9rather than transitional age policy) to be in line to international recommendations.

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“…Existing resources for transition include the American College of Rheumatology (ACR) pediatric transition toolkit and the European Alliance of Associations for Rheumatology (EULAR) Standards and Recommendations for the Transitional Care of Young People with Juvenile-Onset Rheumatic Diseases [ 4 , 5 ]. However, in a recent publication, only 31% of both adult and pediatric health care providers reported using these resources to help with the transition process [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

“…Disruptions in medical care may also be related to their initial experiences with their adult practitioner [ 9 ]. There have been limited studies reporting the perspectives of adult rheumatologists in transition [ 6 , 10 ]. A recent survey of adult rheumatologists, based out of the United States, self-identified as having inadequate training in transition issues of young adults, specifically psychosocial concerns [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

A survey of Canadian adult rheumatologists’ knowledge, comfort level, and barriers in assessing psychosocial needs of young adults with rheumatic diseases

et al. 2023

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To assess adult rheumatologists’ comfort level, current practices, and barriers to provision of optimal care in supporting young adults with pediatric-onset rheumatic conditions in Canada. Survey questions were informed by literature review, a needs assessment, and using milestones listed by the Royal College of Physicians and Surgeons of Canada for the entrustable professional activities (EPAs) applicable to care for rheumatology patients transitioning to adult practice. The electronic survey was distributed to adult rheumatology members of the Canadian Rheumatology Association over 4 months. Four hundred and fifty-one rheumatologists received the survey, with a response rate of 15.2%. Most respondents were from Ontario and had been in practice ≥ 10 years. Three quarters reported a lack of training in transition care although the same proportion were interested in learning more about the same. Approximately 40% felt comfortable discussing psychosocial concerns such as gender identity, sexuality, contraception, drug and alcohol use, vaping, and mental health. Despite this, 45–50% reported not discussing vaping or gender identity at all. The most frequently reported barriers to providing transition care were lack of primary care providers, allied health support, and training in caring for this age group. Most adult rheumatologists lack formal training in transition care and view it as a barrier to providing care for this unique patient population. Future educational initiatives for adult rheumatology trainees should include issues pertaining to adolescents and young adults. More research is needed to assess the effectiveness of resources such as transition navigators in ensuring a successful transition process. Supplementary Information The online version contains supplementary material available at 10.1007/s00296-023-05337-y.

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Differences in Healthcare Transition Views, Practices, and Barriers Among North American Pediatric Rheumatology Clinicians From 2010 to 2018

Cited by 13 publications

References 47 publications

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

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

Transition readiness in adolescents and young adults with chronic rheumatic disease in Oman: today’s needs and future challenges

A survey of Canadian adult rheumatologists’ knowledge, comfort level, and barriers in assessing psychosocial needs of young adults with rheumatic diseases

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