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Published in: Pediatric Rheumatology 1/2022

Open Access 01-12-2022 | Care | Research article

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

Authors: Reem Abdwani, Rumaitha Al Sabri, Zawan Al Hasni, Seyad Rizvi, Humaid Al Wahshi, Batool Al Lawati, Safiya Al Abrawi, Yassir Wali, Mona Al Sadoon

Published in: Pediatric Rheumatology | Issue 1/2022

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Abstract

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.
Literature
1.
go back to reference Ringold S, Nigrovic PA, Feldman BM, Tomlinson GA, von Scheven E, Wallace CA, et al. The childhood arthritis and rheumatology research Alliance consensus treatment plans. Arthritis Rheumatol. 2018;70:669–78.CrossRef Ringold S, Nigrovic PA, Feldman BM, Tomlinson GA, von Scheven E, Wallace CA, et al. The childhood arthritis and rheumatology research Alliance consensus treatment plans. Arthritis Rheumatol. 2018;70:669–78.CrossRef
2.
go back to reference Stoll ML, Cron RQ. Treatment of juvenile idiopathic arthritis in the biologic age. Rheum Dis Clin N Am. 2013;39:751–66.CrossRef Stoll ML, Cron RQ. Treatment of juvenile idiopathic arthritis in the biologic age. Rheum Dis Clin N Am. 2013;39:751–66.CrossRef
3.
go back to reference Magnani A, Pistorio A, Magni-Manzoni S, et al. Achievement of a state of inactive disease at least once in the first 5 years predicts better outcome of patients with polyarticular juvenile idiopathic arthritis. J Rheumatol. 2009;36:628–34.CrossRef Magnani A, Pistorio A, Magni-Manzoni S, et al. Achievement of a state of inactive disease at least once in the first 5 years predicts better outcome of patients with polyarticular juvenile idiopathic arthritis. J Rheumatol. 2009;36:628–34.CrossRef
4.
go back to reference Wallace CA, Giannini EH, Spalding SJ, et al. Childhood arthritis and rheumatology research alliance: trial of early aggressive therapy in polyarticular juvenile idiopathic arthritis. Arthritis Rheum. 2012;64:2012–21.CrossRef Wallace CA, Giannini EH, Spalding SJ, et al. Childhood arthritis and rheumatology research alliance: trial of early aggressive therapy in polyarticular juvenile idiopathic arthritis. Arthritis Rheum. 2012;64:2012–21.CrossRef
5.
go back to reference Hazel E, Zhang X, Duffy CM, et al. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol. 2010;8:2.CrossRef Hazel E, Zhang X, Duffy CM, et al. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol. 2010;8:2.CrossRef
6.
go back to reference Selvaag AM, Aulie HA, Lilleby V, Flatø B. Disease progression into adulthood and predictors of long-term active disease in juvenile idiopathic arthritis. Ann Rheum Dis. 2016;75(1):190–5.CrossRef Selvaag AM, Aulie HA, Lilleby V, Flatø B. Disease progression into adulthood and predictors of long-term active disease in juvenile idiopathic arthritis. Ann Rheum Dis. 2016;75(1):190–5.CrossRef
7.
go back to reference Hersh A, von Scheven E, Yelin E. Adult outcomes of childhood-onset rheumatic diseases. Nat Rev Rheumatol. 2011;7(5):290–5.CrossRef Hersh A, von Scheven E, Yelin E. Adult outcomes of childhood-onset rheumatic diseases. Nat Rev Rheumatol. 2011;7(5):290–5.CrossRef
8.
go back to reference Groot N, Shaikhani D, Teng YKO, de Leeuw K, Bijl M, Dolhain RJEM, et al. Long-term clinical outcomes in a cohort of adults with childhood-onset systemic lupus erythematosus. Arthritis Rheum. 2019;71:290–301.CrossRef Groot N, Shaikhani D, Teng YKO, de Leeuw K, Bijl M, Dolhain RJEM, et al. Long-term clinical outcomes in a cohort of adults with childhood-onset systemic lupus erythematosus. Arthritis Rheum. 2019;71:290–301.CrossRef
9.
go back to reference Schlichtiger J, Haas JP, Barth S, et al. Education and employment in patients with juvenile idiopathic arthritis – a standardized comparison to the German general population. Pediatr Rheumatol. 2017;15:45.CrossRef Schlichtiger J, Haas JP, Barth S, et al. Education and employment in patients with juvenile idiopathic arthritis – a standardized comparison to the German general population. Pediatr Rheumatol. 2017;15:45.CrossRef
10.
go back to reference Bouaddi I, Rostom S, El Badri D, Hassani A, Chkirate B, Amine B, et al. Impact of juvenile idiopathic arthritis on schooling. BMC Pediatr. 2013;13:2.CrossRef Bouaddi I, Rostom S, El Badri D, Hassani A, Chkirate B, Amine B, et al. Impact of juvenile idiopathic arthritis on schooling. BMC Pediatr. 2013;13:2.CrossRef
11.
go back to reference Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review. J Pediatr. 2017;188:263–269.e215.CrossRef Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review. J Pediatr. 2017;188:263–269.e215.CrossRef
12.
go back to reference Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult healthcare systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14(7):570–6.CrossRef Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult healthcare systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14(7):570–6.CrossRef
13.
go back to reference Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang I-C, Livingood W, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. JPediatr Psychol. 2011;36(2):160–71.CrossRef Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang I-C, Livingood W, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. JPediatr Psychol. 2011;36(2):160–71.CrossRef
14.
go back to reference Wood DL, Sawicki GS, Miller MD, Smotherman C, Lukens-Bull K, Livingood WC, et al. The transition readiness assessment questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14(4):415–22.CrossRef Wood DL, Sawicki GS, Miller MD, Smotherman C, Lukens-Bull K, Livingood WC, et al. The transition readiness assessment questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14(4):415–22.CrossRef
15.
go back to reference Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, et al. A clinical tool to measure the components of healthcare transition from pediatric care to adult care: the UNC TR(x) ANSITION scale. Ren Fail. 2012;34(6):744–53.CrossRef Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, et al. A clinical tool to measure the components of healthcare transition from pediatric care to adult care: the UNC TR(x) ANSITION scale. Ren Fail. 2012;34(6):744–53.CrossRef
16.
go back to reference Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, et al. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx questionnaire. J Pediatr Nurs. 2015;30(5):691–9.CrossRef Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, et al. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx questionnaire. J Pediatr Nurs. 2015;30(5):691–9.CrossRef
17.
go back to reference Moynihan M, Saewyc E, Whitehouse S, Paone M, McPherson G. Assessing readiness for transition from paediatric to adult health care: revision and psychometric evaluation of the am I ON TRAC for adult are questionnaire. J Adv Nurs. 2015;71(6):1324–35.CrossRef Moynihan M, Saewyc E, Whitehouse S, Paone M, McPherson G. Assessing readiness for transition from paediatric to adult health care: revision and psychometric evaluation of the am I ON TRAC for adult are questionnaire. J Adv Nurs. 2015;71(6):1324–35.CrossRef
18.
go back to reference Klassen AF, Grant C, Barr R, Brill H, Kraus de Camargo O, Ronen GM, et al. Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: the TRANSITION-Q. Child Care Health Dev. 2015;41:547–58.CrossRef Klassen AF, Grant C, Barr R, Brill H, Kraus de Camargo O, Ronen GM, et al. Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: the TRANSITION-Q. Child Care Health Dev. 2015;41:547–58.CrossRef
19.
go back to reference Sawicki GS, Garvey KC, Toomey SL, Williams KA, Chen Y, Hargraves JL, et al. Development and validation of the adolescent assessment of preparation for transition: a novel patient experience measure. J Adolesc Health. 2015;57(3):282–7.CrossRef Sawicki GS, Garvey KC, Toomey SL, Williams KA, Chen Y, Hargraves JL, et al. Development and validation of the adolescent assessment of preparation for transition: a novel patient experience measure. J Adolesc Health. 2015;57(3):282–7.CrossRef
20.
go back to reference Parfeniuk S, Petrovic K, MacIsaac PL, Cook KA, Rempel GR. Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review. J Trans Med. 2020;1:2. Parfeniuk S, Petrovic K, MacIsaac PL, Cook KA, Rempel GR. Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review. J Trans Med. 2020;1:2.
21.
go back to reference Cantu-Quintanilla G, Ferris M, Otero A, Gutierrez-Almaraz A, Valverde-Rosas S, Velazquez-Jones L, et al. Validation of the UNC TRxANSITION scale version 3 among Mexican adolescents with chronic kidney disease. J Pediatr Nurs. 2015;30:e71–81.CrossRef Cantu-Quintanilla G, Ferris M, Otero A, Gutierrez-Almaraz A, Valverde-Rosas S, Velazquez-Jones L, et al. Validation of the UNC TRxANSITION scale version 3 among Mexican adolescents with chronic kidney disease. J Pediatr Nurs. 2015;30:e71–81.CrossRef
22.
go back to reference Fenton N, Ferris M, Ko Z, Javalkar K, Hooper SR. The relationship of health care transition readiness to disease-related characteristics, psychosocial factors, and health care outcomes: preliminary findings in adolescents with chronic kidney disease. J Pediatr Rehabil Med. 2015;8:13–22.CrossRef Fenton N, Ferris M, Ko Z, Javalkar K, Hooper SR. The relationship of health care transition readiness to disease-related characteristics, psychosocial factors, and health care outcomes: preliminary findings in adolescents with chronic kidney disease. J Pediatr Rehabil Med. 2015;8:13–22.CrossRef
23.
go back to reference Javalkar K, Fenton N, Cohen S, Ferris M. Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease. Prev Chronic Dis. 2014;11:E117.CrossRef Javalkar K, Fenton N, Cohen S, Ferris M. Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease. Prev Chronic Dis. 2014;11:E117.CrossRef
24.
go back to reference Javalkar K, Johnson M, Kshirsagar AV, Ocegueda S, Detwiler RK, Ferris M. Ecological factors predict transition readiness/selfmanagement in youth with chronic conditions. J Adolesc Health. 2016;58:40–6.CrossRef Javalkar K, Johnson M, Kshirsagar AV, Ocegueda S, Detwiler RK, Ferris M. Ecological factors predict transition readiness/selfmanagement in youth with chronic conditions. J Adolesc Health. 2016;58:40–6.CrossRef
25.
go back to reference Michaud PA, Jansen D, Schrier L, Vervoort J, Visser A, Dembiński Ł. An exploratory survey on the state of training in adolescent medicine and health in 36 European countries. Eur J Pediatr. 2019;178(10):1559–65.CrossRef Michaud PA, Jansen D, Schrier L, Vervoort J, Visser A, Dembiński Ł. An exploratory survey on the state of training in adolescent medicine and health in 36 European countries. Eur J Pediatr. 2019;178(10):1559–65.CrossRef
26.
go back to reference Michaud PA, Schrier L, Ross-Russel R, van der Heijden L, Dossche L, Copley S, et al. Paediatric departments need to improve residents' training in adolescent medicine and health: a position paper of the European academy of Paediatrics. Eur J Pediatr. 2018;177(4):479–87.CrossRef Michaud PA, Schrier L, Ross-Russel R, van der Heijden L, Dossche L, Copley S, et al. Paediatric departments need to improve residents' training in adolescent medicine and health: a position paper of the European academy of Paediatrics. Eur J Pediatr. 2018;177(4):479–87.CrossRef
27.
go back to reference Wright RJ, Howard EJ, Newbery N, Gleeson H. Training gap - the present state of higher specialty training in adolescent and young adult health in medical specialties in the UK. Future Healthcare Journal. 2017;4:80–5.PubMedPubMedCentral Wright RJ, Howard EJ, Newbery N, Gleeson H. Training gap - the present state of higher specialty training in adolescent and young adult health in medical specialties in the UK. Future Healthcare Journal. 2017;4:80–5.PubMedPubMedCentral
29.
go back to reference Al-Makadma AS, Al-Tanni M. The perception of adolescent medicine among health care professionals in Saudi Arabia. J Adol Health. 2010;47:608–9.CrossRef Al-Makadma AS, Al-Tanni M. The perception of adolescent medicine among health care professionals in Saudi Arabia. J Adol Health. 2010;47:608–9.CrossRef
30.
go back to reference Al Makadma A. Adolescent health and health care in the Arab gulf countries: Today's needs and tomorrow's challenges. Int J Pediatrics Adolescent Med. 2017;4(1):1–8.CrossRef Al Makadma A. Adolescent health and health care in the Arab gulf countries: Today's needs and tomorrow's challenges. Int J Pediatrics Adolescent Med. 2017;4(1):1–8.CrossRef
31.
go back to reference Yassaee A, Hale D, Armitage A, Viner R. The impact of age of transfer on outcomes in the transition from pediatric to adult health systems: a systematic review of reviews. J Adolesc Health. 2019;64(6):709–7.CrossRef Yassaee A, Hale D, Armitage A, Viner R. The impact of age of transfer on outcomes in the transition from pediatric to adult health systems: a systematic review of reviews. J Adolesc Health. 2019;64(6):709–7.CrossRef
32.
go back to reference Eleftheriou D, Isenberg DA, Wedderburn LR, Ioannou Y. The coming of age of adolescent rheumatology. Nat Rev Rheumatol. 2014;10(3):187–93.CrossRef Eleftheriou D, Isenberg DA, Wedderburn LR, Ioannou Y. The coming of age of adolescent rheumatology. Nat Rev Rheumatol. 2014;10(3):187–93.CrossRef
33.
go back to reference McDonagh JE, Farre A. Transitional Care in Rheumatology: a review of the literature from the past 5 years. Curr Rheumatol Rep. 2019;21:57.CrossRef McDonagh JE, Farre A. Transitional Care in Rheumatology: a review of the literature from the past 5 years. Curr Rheumatol Rep. 2019;21:57.CrossRef
34.
go back to reference McManus M, White P, Barbour A, Downing B, Hawkins K, Quion N, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health. 2015;56(1):73–8.CrossRef McManus M, White P, Barbour A, Downing B, Hawkins K, Quion N, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health. 2015;56(1):73–8.CrossRef
36.
go back to reference Roberts JE, Halyabar O, Petty CR, Son MB. Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey. Pediatr Rheumatol Online J. 2021;19(1):61.CrossRef Roberts JE, Halyabar O, Petty CR, Son MB. Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey. Pediatr Rheumatol Online J. 2021;19(1):61.CrossRef
37.
go back to reference Stollon N, Zhong Y, Ferris M, Bhansali S, Pitts B, Rak E, et al. Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease. World J Gastroenterol. 2017;23(18):3349–55.CrossRef Stollon N, Zhong Y, Ferris M, Bhansali S, Pitts B, Rak E, et al. Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease. World J Gastroenterol. 2017;23(18):3349–55.CrossRef
38.
go back to reference Foster HE, Minden K, Clemente D, Leon L, McDonagh JE, Kamphuis S, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2016;76(4):639–46.CrossRef Foster HE, Minden K, Clemente D, Leon L, McDonagh JE, Kamphuis S, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2016;76(4):639–46.CrossRef
39.
go back to reference Clemente D, Leon L, Foster H, et al. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol. 2017;15:49.CrossRef Clemente D, Leon L, Foster H, et al. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol. 2017;15:49.CrossRef
40.
go back to reference Johnson K, Edens C, Sadun RE, et al. For the CARRA transition workgroup. Differences in health care transition views, practices, and barriers amongst north American pediatric rheumatology clinicians from 2010 to 2018. Rheumatol. 2021;48(9):1442–9. Johnson K, Edens C, Sadun RE, et al. For the CARRA transition workgroup. Differences in health care transition views, practices, and barriers amongst north American pediatric rheumatology clinicians from 2010 to 2018. Rheumatol. 2021;48(9):1442–9.
Metadata
Title
Transition readiness in adolescents and young adults with chronic rheumatic disease in Oman: today’s needs and future challenges
Authors
Reem Abdwani
Rumaitha Al Sabri
Zawan Al Hasni
Seyad Rizvi
Humaid Al Wahshi
Batool Al Lawati
Safiya Al Abrawi
Yassir Wali
Mona Al Sadoon
Publication date
01-12-2022
Publisher
BioMed Central
Keyword
Care
Published in
Pediatric Rheumatology / Issue 1/2022
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-022-00687-6

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