Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment

Abstract

PurposeTo identify the views and experiences and thus the transition-related needs of young people with visual impairment (VI), so as to inform future practice and policies.Patients and methodsQualitative study of 17 young people aged 16-19 years (ie the conventional transition age threshold) with VI (best-corrected acuity logMAR worse than 0.48) and without additional impairments, drawn from a sampling frame of paediatric ophthalmology patients attending Great Ormond Street Hospital and Moorfields Eye Hospital (London, UK). In-depth, semistructured interviews were conducted to elicit their experiences, preferences, and attitudes towards transitioning within health care. Qualitative thematic analysis identified themes related to participants' experience of transition.ResultsEight of 17 participants had transitioned out of paediatric ophthalmology services, 7 had not, and 2 were unsure. Their views and experiences varied. Only 2 of those who had transitioned preferred their prior paediatric service, and 1 still in a paediatric services did not want to transition. Age-appropriate communication and physical clinical environment were two key components of care, both associated with greater confidence to self-manage health care in the future as an adult. Emotional attachment to paediatric services/teams was associated with reluctance to transition.ConclusionsGeneric guidance on transition is broadly applicable to children/young people with VI. Age-appropriate communication and appropriate physical clinical environments may be optimally delivered through adolescent ophthalmology services bridging paediatric and adult provision. Lack of research on transitions in paediatric ophthalmology has thus far restricted intervention studies; our findings serve to aid in developing an evidence base to achieve this.