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

Abstract

Objective Conduct a needs assessment and environmental scan to support optimal pediatric to adult rheumatology care transitions in Canada. Methods This initiative involved three phases: 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; an environmental scan, via semi-structured interviews, of existing rheumatology transition service care models and challenges in care delivery; and a focus group to prioritize national activities. Results The needs assessment survey was completed by 65 members, with 66% agreeing a national approach to transition care was needed. Semi-structured interviews reflecting activities at 9 transition care sites were conducted, and 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/family 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.

Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

“…The priorities highlighted by Canadian rheumatologists are confirmed by our findings including calls for increased allied health support, access to mental health resources, and greater preparation for the adult medical system. However, while current literature on transition care in rheumatology from both patient and physician lenses [ 4 , 14 ] assert the importance of successful patient integration into the adult healthcare system, further action is needed to tangibly improve the quality and accessibility of transition care in Canada. The findings also resonate with the recommendations of the Canadian Pediatric Society position statement for transition to adult care for youth with complex health care needs which include early transition planning, and support before and after transition [ 40 ].…”

“…Many existing transition initiatives work to support patients before and during their transition to the adult medical system. Current priorities emphasise the importance of transition readiness and patient education [ 14 ]. However, despite participating in transition preparation initiatives, and best-efforts on the behalf of their pediatric care teams, patients often still felt unsupported by their receiving rheumatologist post-transition.…”

Influences of Magnetic Resonance Imaging Superresolution Algorithm-Based Transition Care on Prognosis of Children with Severe Viral Encephalitis

“…According to the study conducted by Chen et al [28], TC exerted a profound influence on the nursing of stroke patients. Besides, it was put forward in multiple studies that TC was needed in the late care for many diseases [29]. Van et al [30] also pointed out in their study that TC could not only effectively reduce medical system cost but also enhanced the effective rate of the treatment for patients…”

Advancing Transition in Resource-Constrained Settings

“…Whilst improved therapeutics such as biologic agents have allowed for greater survival into adulthood, there remains an ongoing risk of disease flares, lifelong potential for disability, as well as a psychosocial impact of these chronic conditions that needs to be monitored and managed throughout adolescence and into adulthood [ 1 ]. A disorganized execution of transition to adult services can lead to treatment noncompliance, lack of healthcare awareness, loss to follow-up, and overall poor disease outcomes [ 2 ].…”

“…Consideration could be given to how transition can still effectively occur with a more streamlined approach. The availability of allied health providers to support transition has been highlighted as a major barrier to holistic transitional care [ 2 ]. One solution may include the use of telemedicine.…”