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Research ArticleArticle
Open Access

National Priorities for High-quality Rheumatology Transition Care for Youth in Canada

Cheryl Barnabe, Kelsey Chomistek, Nadia Luca, Glen Hazlewood, Claire E.H. Barber, Amanda Steiman and Elizabeth Stringer
The Journal of Rheumatology October 2020, jrheum.200790; DOI: https://doi.org/10.3899/jrheum.200790
Cheryl Barnabe
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Kelsey Chomistek
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Nadia Luca
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Glen Hazlewood
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Claire E.H. Barber
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Amanda Steiman
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Elizabeth Stringer
This study was supported in kind by the Canadian Rheumatology Association’s Pediatrics and Quality Care Committees, and through the Canada Research Chair in Rheumatoid Arthritis and Autoimmune Diseases held by C. Barnabe. C. Barnabe, MD, MSc, Associate Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Past-Chair, Quality Care Committee, Canadian Rheumatology Association; K. Chomistek, BSc, Masters of Science student, Faculty of Graduate Studies, University of Calgary, Calgary, Alberta; N. Luca, MD, MSc, Clinical Assistant Professor in the Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Executive, Pediatrics Committee, Canadian Rheumatology Association; G. Hazlewood, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; C.E. Barber, MD, PhD, Assistant Professor, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, and Member, Quality Care Committee, Canadian Rheumatology Association; A. Steiman, MD, MSc, Assistant Professor, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, and Chair, Quality Care Committee, Canadian Rheumatology Association; E. Stringer, MD, Associate Professor, Department of Pediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, and Member, Pediatrics Committee, Canadian Rheumatology Association, Canada. The authors have no conflicts of interest to declare. Address correspondence to Dr. C. Barnabe, 3330 Hospital Dr NW, Calgary, AB T2N4N1, Canada. Email: ccbarnab@ucalgary.ca. Full Release Article. For details see Reprints and Permissions at jrheum.org. Accepted for publication September 29, 2020.
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Abstract

Objective To conduct a needs assessment and environmental scan to support optimal transition from pediatric to adult rheumatology care in Canada.

Methods This initiative involved 3 phases: (1) a survey-based needs assessment of adult and pediatric rheumatologist members of the Canadian Rheumatology Association to identify perceived infrastructure, educational needs, and national resources to support transition care; (2) an environmental scan, through semistructured interviews, of existing rheumatology transition service care models and challenges in care delivery; and (3) a focus group to prioritize national activities.

Results The needs assessment survey was completed by 65 members, with 66% agreeing that a national approach to transition care was needed. Semistructured interviews reflecting activities at 9 transition care sites were conducted, and they identified candidate models of care, including direct transfer, progressive transfer, and shared care models. Challenges and needs experienced in these care models reflected resource and infrastructure needs, poor availability of mechanisms to support parents and youth through the transition process, and the need for evaluation to support quality improvement. The focus group and prioritization activity was attended by 26 participants, with each having the ability to cast 3 votes. “Supporting patient education for transition to adult rheumatology health care system” (n = 17 votes) and “advocacy activities to access allied health support, including funding” (n = 10 votes) emerged as the top priorities for national initiatives.

Conclusion We have identified priorities in education and advocacy for advancing transition care in Canada that require participation of pediatric and adult rheumatology providers, patients, and arthritis stakeholders in the interest of advancing transition care outcomes.

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National Priorities for High-quality Rheumatology Transition Care for Youth in Canada
Cheryl Barnabe, Kelsey Chomistek, Nadia Luca, Glen Hazlewood, Claire E.H. Barber, Amanda Steiman, Elizabeth Stringer
The Journal of Rheumatology Oct 2020, jrheum.200790; DOI: 10.3899/jrheum.200790

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National Priorities for High-quality Rheumatology Transition Care for Youth in Canada
Cheryl Barnabe, Kelsey Chomistek, Nadia Luca, Glen Hazlewood, Claire E.H. Barber, Amanda Steiman, Elizabeth Stringer
The Journal of Rheumatology Oct 2020, jrheum.200790; DOI: 10.3899/jrheum.200790
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