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Abstract Number: 976

Transitioning from Paediatric to Adult Health Services: Development of an Integrated Programme Incorporating Patient and Provider Values

Fiona Niddrie1, Gabor Major2,3, Angela Myles4,5, Davinder Singh-Grewal6,7 and Jeffery Chaitow6,7, 1Rheumatology, Bone and Joint Institute, John Hunter Hospital, Hunter New England Local Health District, Newcastle, Australia, 2Rheumatology, Bone and Joint Institute, John Hunter Hospital, Newcastle, Australia, 3University of Newcastle, Newcastle, Australia, Newcastle, Australia, 4HNEkidshealth, Hunter New England Local Health District, Newcastle, Australia, 5Transition Care Network, Agency for Clinical Innovation, Sydney, Australia, 6Paediatric Rheumatology, John Hunter Hospital, Newcastle, Australia, 7Rheumatology, Sydney Children's Hospital Network, Randwick and Westmead, Australia

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: Adolescent patients, pediatric rheumatology and skill development, Transition

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Session Information

Date: Sunday, October 21, 2018

Session Title: 3S115 ACR/ARHP Abstract: Pediatric Rheum (976–981)

Session Type: ACR/ARHP Combined Abstract Session

Session Time: 4:30PM-6:00PM

Background/Purpose:

The transfer from the supportive and guided environment of paediatric to adult care with its increased emphasis on autonomy and self reliance poses challenges for patients and clinicians. Challenges, which if not recognised, and adequately met, can lead to poor health outcomes.

We sought to develop an integrated programme incorporating patient and carer perception of important issues and information from published models of transition.

Project Aims:

  1. To develop a disease relevant, location and community appropriate value transition pathway and package
  2. To set up a dedicated clinic for adolescents and young adults with rheumatic disease (AYARD)

Methods:

Programme Development

Stage 1: Review of existing programmes

  • literature search and personal contact with other institutions and local transition services

Stage 2: Determination of patient and carer perspectives

  • Systematic qualitative study of patient attitudes and experiences (Kelly A, Niddrie F, Tunnicliffe D, Hanson C, Major G, Singh-Grewal D, Tong A. Patients’ attitudes and experiences of transitional care in paediatric rheumatology: A systematic review of qualitative studies, Arthritis Rheumatol. 2017; 69(S10):1-4481)
  • Survey by anonymous questionnaire of local >13 year old clinic patients and parents/carers, inviting feedback on the need for an AYARD clinic

Stage 3: Pathway development

  • Focus meetings of key personnel (paediatric, adult and adolescent medical, nursing specialists and administrative staff)
  • Utilise findings from stage 1 and 2

Results:

  1. Identified key components for effective transition
    • Literature review
      • Written transition protocol
      • Dedicated coordinator
      • Age and skill appropriate progression
      • Flexibility in timing
      • Shared care between paediatric and adult team
      • Programme evaluation
    • Systematic qualitative study of patient/carer perspectives
      • Building trust in familiarity
      • Creating a sense of belonging
      • Facilitating the quest for autonomy
  2. Patient and Parent/carer attitude to transition.
    • Questionnaire response with 92% strongly supportive of AYARD clinic
  3. Programme development
    • Dedicated local coordinator appointed
    • Orientation visit and guided tour for new patients
    • 3 stage transition based on individual needs and skill development
    • Package of documents, including transition pathway, information booklet, skills assessments, clinician checklists, transition plans, transfer document
    • Annual combined paediatric and adult consultations
  4. Effectiveness assessment
    • An evaluation tool focused on key programme objectives and incorporating patient reported outcomes is being developed

Conclusion:

Paediatric and adult rheumatology services at one location allows a collaborative and coordinated approach to transition. A dedicated clinic, designated coordinator, formal transition pathway, and service specific resources, is anticipated to improve outcomes for patients transitioning from paediatric to adult rheumatology services. Evaluation is required to demonstrate effectiveness.


Disclosure: F. Niddrie, None; G. Major, None; A. Myles, None; D. Singh-Grewal, None; J. Chaitow, None.

To cite this abstract in AMA style:

Niddrie F, Major G, Myles A, Singh-Grewal D, Chaitow J. Transitioning from Paediatric to Adult Health Services: Development of an Integrated Programme Incorporating Patient and Provider Values [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/transitioning-from-paediatric-to-adult-health-services-development-of-an-integrated-programme-incorporating-patient-and-provider-values/. Accessed March 23, 2023.
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