Fall 2016 (Volume 26, Number 3)
The Transition from Pediatric-centred to Adult-oriented Care in Rheumatology
By Evelyn Rozenblyum, MD, FRCPC; and
Lynn Spiegel, MD, FRCPC
Transition has been defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented healthcare systems,” whereas transfer refers to “a single act of moving from one facility to another, typically with no preparation or planning ahead of time.”1-3 As rheumatologic diseases affect both the patients’ physical and emotional development, it is important that we think about thoughtful ways to prepare them for transition to the adult healthcare system, rather than simply transferring them when they reach 18 years of age. This article focuses on the importance of transition, current efforts underway in Canada and future research initiatives in the field of transition in rheumatology.
Why Transition is Important
In Canadian centres, transfer to adult care typically occurs at age 18. However, the adolescent brain and personal identity develops well into the mid-twenties; therefore, youth may not be developmentally prepared to transition to adult care.4 Furthermore, during this critical time, young adults are often dealing with many areas of personal transition (i.e., relationships, school and career), making their medical needs a lower priority. These needs may not be properly addressed in routine clinic visits due to time constraints or lack of practitioner experience. Also, patients are often unprepared to take charge of their own medical management since their caregivers have typically assumed responsibility for coordinating appointments and tracking medications. These issues can lead to significant dropout from the medical system, with consequent compromise of disease control.5
Transition planning should begin in the pediatric centre from an early age. Encouraging patient autonomy and education around their disease and medications are paramount to the early transition process in pediatrics.
Transition Efforts Across the Country
Rheumatology centres across Canada have tried to address transition of adolescent patients’ needs in different ways. There are well-established Young Adult with Rheumatic Diseases (YARD) clinics, in Halifax, Montreal, Calgary, and Vancouver, which have been shown to be most successful in health outcomes and decreased rates of clinic dropouts.6 In Vancouver, care is shared between the adult and pediatric providers, bimonthly in a separate clinic space, for patients between 18-24 years old who were followed in the Pediatric Rheumatology Program. Multidisciplinary support is available for visits (i.e., nursing, social work, occupational therapy [OT] or physiotherapy [PT]).
Other centres, such as Halifax and Calgary, use a different approach. Halifax has quarterly clinics whereby the patient meets their new adult rheumatology provider in their familiar pediatric clinic, usually for one appointment prior to transition. In Calgary, the pediatric rheumatologist goes to the adult centre to help acquaint the patient to their new surroundings. Smaller centres across the country identify adult rheumatologists who have an interest in looking after young adults and refer to them almost exclusively.
Specialized clinics, such as the Lupus Program in Toronto, collaborate with adolescent medicine to help engage youth (as young as 13 years old) before they leave SickKids. In the general rheumatology clinics, there is a multidisciplinary approach with nurses, PT/OT practitioners and rheumatologists providing transition teaching with support from adolescent medicine and social work.
Importance of Adult Rheumatology Involvement
Collaborating with our adult rheumatology colleagues is extremely important to understand and address the needs of our young adult patients. Effective communication (verbal and written), education around psychosocial issues and identifying how to best coordinate our efforts are paramount to achieving this goal.
Challenges we can anticipate include the funding difficulties for additional multidisciplinary staff, longer appointments, and clinic space availability. However, we hope adult rheumatologists will be eager to work together to develop processes and programs.
Research Initiatives Through the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI)
CAPRI has created a working group to focus and unite our transition research efforts nationally with our adult colleagues. Currently, there are many collaborative national projects, such as evaluating a transition readiness questionnaire (the Readiness for Adult CarE in Rheumatology [RACER]) and creating a transition toolkit through focus groups with patients, families and adult/pediatric rheumatology practitioners. Our goal is to develop a core set of outcome measures to evaluate the acceptability and effectiveness of transition programs that will be linked with the national registries.
Clinically, we aim to create several models of care that different-sized centres can adopt, with the eventual goal of having a transition program in every major centre in Canada. It is our hope that these initiatives will enhance collaboration between pediatric and adult rheumatologists in order to serve our patients and families better and to achieve excellent medical and psychosocial outcomes.
1. Callahan ST, Winitzer RF, Keenan P. Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Curr Opin Pediatr 2001 Aug 1;13(4):310-6.
2. Tuchman LK, Slap GB, Britto MT. Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 2008 Sep;34(5):557-63.
3. Viner RM. Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch Dis Child 2008 Feb;93(2):160–3.
4. Steinberg L. Gallagher lecture. The family at adolescence: transition and transformation. J Adolesc Health 2000 Sep;27(3):170-8.
5. 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 Jan 11;8:2.
6. Stringer E, Scott R, Mosher D, MacNeill I, et al. Evaluation of a Rheumatology Transition Clinic. Pediatr Rheumatol Online 2015 Jun 11;13:22.
Evelyn Rozenblyum, MD, FRCPC
Clinical Assistant Professor, Department of Pediatrics,
Royal University Hospital, University of Saskatchewan
Lynn Spiegel, MD, FRCPC
Assistant Professor, Department of Pediatrics, University of Toronto
Project Investigator, Child Health Evaluative Sciences,
SickKids Research Institute
Staff Rheumatologist, The Hospital for Sick Children