Oral Presentation ARA-NSW 2019 - 41st Annual NSW Branch Meeting

Patient and caregiver perspectives on transition from pediatric to adult healthcare in rheumatic diseases: an interview study (#21)

Ivy W Jiang 1 2 3 , Gabor Major 4 5 , Davinder Singh-Grewal 3 6 7 8 , Jeffrey Chaitow 7 8 , Arvin Domardoran 3 9 , Gerladine Hassett 3 6 10 , Ayano Kelly 1 11 , Karine Manera 1 2 , Fiona Niddre 4 , Sean G O'Neill 3 6 10 , Claris Teng 1 2 , Allison Tong 1 2 , David J Tunnicliffe 1 2
  1. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia
  2. Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia
  3. Faculty of Medicine, The University of New South Wales, Sydney, NSW, Australia
  4. Department of Rheumatology, Bone and Joint Centre, Royal Newcastle Centre/John Hunter Hospital, Newcastle, NSW, Australia
  5. School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia
  6. Department of Rheumatology, Liverpool Hospital, Sydney, NSW, Australia
  7. Department of Rheumatology, The Sydney Children's Hospital Network, Sydney, NSW, Australia
  8. Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  9. Department of Rheumatology, Prince of Wales, Sydney, NSW, Australia
  10. Ingham Institute of Applied Medical Research, Liverpool Hospital, Sydney, NSW, Australia
  11. School of Medicine, Australian National University, Canberra, ACT, Australia

Objectives: Young people with rheumatic disease can suffer from worsening disease activity during transition from pediatric to adult healthcare. Over half of patients with rheumatic conditions are lost to follow-up within two years after transfer.The aim was to describe the experiences, priorities, and needs of patients with rheumatic disease and their caregivers during transition from pediatric to adult healthcare.

 Methods: Face-to-face and telephone semi-structured interviews were conducted between December 2018 and April 2019 with patients aged 14-25 years diagnosed with inflammatory rheumatic disease (n=13), and their caregivers (n=15), from five centers in New South Wales, Australia. All transcripts were thematically analyzed.

 Results: We identified four themes with respective subthemes: avoiding repeat of past disruption (maintaining disease stability, preserving adjusted personal goals, protecting social inclusion, newly empowered sense of self); overwhelmed by the intimidating environment (serious and somber mood, navigating a disorientating space, discredited and isolated identity, fear of a rigid system); re-establishing therapeutic alliances with clinicians (attachment to a developed sense of self, losing person-focused professionalcare, re-defining interpersonal boundaries, reassurance of alternative supports, natural trust in adult doctor); and negotiating patient autonomy (confidence in formerly-gained independence, alleviating burden on patients, mediating parental anxiety).

 Conclusions: Young patients with inflammatory rheumatic disease and caregivers value a gradual transition to ensure past medical and psychosocial disruptions do not re-occur. Hence, transition that is supported by a familiar adult environment, continuous care by rheumatologists, and negotiated autonomy in self-management enables patients to maintain their health alongside social and personal pursuits. Generating recommendations with both participants and key staff can collectively improve transitional models of care in rheumatology.