Patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review

Ayano Kelly; Fiona Niddrie; David J Tunnicliffe; Andrea Matus Gonzalez; Camilla Hanson; Ivy Jiang; Gabor Major; Davinder Singh-Grewal; Kathleen Tymms; Allison Tong

doi:10.1093/rheumatology/keaa168

Patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review

Rheumatology (Oxford). 2020 Dec 1;59(12):3737-3750. doi: 10.1093/rheumatology/keaa168.

Authors

Ayano Kelly^{1

2

3}, Fiona Niddrie⁴, David J Tunnicliffe^{3

5}, Andrea Matus Gonzalez³, Camilla Hanson^{3

5}, Ivy Jiang^{3

6}, Gabor Major^{4

7}, Davinder Singh-Grewal^{4

8

9

10

11}, Kathleen Tymms^{1

2

12}, Allison Tong^{3

5}

Affiliations

¹ College of Health and Medicine, Australian National University.
² Department of Rheumatology, The Canberra Hospital, Canberra, ACT.
³ Centre for Kidney Research, The Children's Hospital at Westmead, Westmead.
⁴ Department of Rheumatology, Bone and Joint Centre, Royal Newcastle Centre/John Hunter Hospital, Newcastle.
⁵ Sydney School of Public Health, The University of Sydney, Sydney.
⁶ School of Medicine, University of New South Wales, Randwick.
⁷ School of Medicine and Public Health, University of Newcastle, Newcastle.
⁸ Department of Rheumatology, The Children's Hospital at Westmead, Westmead.
⁹ Discipline of Paediatrics and Child Health, The University of Sydney, Sydney.
¹⁰ School of Maternal and Child Health, University of New South Wales, Randwick.
¹¹ Department of Rheumatology, Liverpool Hospital, Liverpool, NSW.
¹² Canberra Rheumatology, Canberra, ACT, Australia.

PMID: 32413124
DOI: 10.1093/rheumatology/keaa168

Abstract

Objectives: We aimed to describe patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology to inform patient-centred transitional care programmes.

Methods: We searched MEDLINE, EMBASE, PsycINFO and CINAHL to August 2019 and used thematic synthesis to analyse the findings.

Results: From 26 studies involving 451 people with juvenile-onset rheumatic conditions we identified six themes: a sense of belonging (comfort in familiarity, connectedness in shared experiences, reassurance in being with others of a similar age, desire for normality and acceptance); preparedness for sudden changes (confidence through guided introductions to the adult environment, rapport from continuity of care, security in a reliable point of contact, minimizing lifestyle disruptions); abandonment and fear of the unknown (abrupt and forced independence, ill-equipped to hand over medical information, shocked by meeting adults with visible damage and disability, vulnerability in the loss of privacy); anonymous and dismissed in adult care (deprived of human focus, sterile and uninviting environment, disregard of debilitating pain and fatigue); quest for autonomy (controlled and patronized in the paediatric environment, liberated from the authority of others, freedom to communicate openly); and tensions in parental involvement (overshadowed by parental presence, guilt of excluding parents, reluctant withdrawal of parental support).

Conclusion: Young people feel dismissed, abandoned, ill-prepared and out of control during transition. However, successful transition can be supported by preparing for changes, creating a sense of belonging and negotiating parental involvement and autonomy. Incorporating patient-identified priorities into transitional services may improve satisfaction and outcomes in young people with juvenile-onset rheumatic conditions.

Keywords: qualitative research; rheumatology; systematic review; transition to adult care; transitional care.

Publication types

Research Support, Non-U.S. Gov't
Systematic Review

MeSH terms

Humans
Psychology, Adolescent*
Rheumatology*
Transition to Adult Care*