Solebo, Ameenat, Kellett, Salomey, Tadic, Valerija ORCID: 0000-0003-3982-0340 , Petrushkin, Harry, Ashworth, Jane, Connor, Alan, McLoone, Eibhlin, Sharma, Srilakshmi, Agorogiannis, Eleftherios, Watts, Patrick, Hughes, Edward, Ritchie, Ailsa, Pilling, Rachel, Benzimra, James, Marsh, Catherine, Pharoah, Daniel, Choi, Jessy, Dick, Andrew and Rahi, Jugnoo (2023) Supporting positive patient experiences for rare disease care during disruptive times: findings from a multicentre study. Research Square, Durham, NC. (doi:https://doi.org/10.21203/rs.3.rs-3133181/v1)

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Abstract

Introduction: We describe the perceptions and experiences of health care services during the COVID-19 pandemic of those newly diagnosed with a rare, chronic inflammatory eye disorder.
Methods: We undertook a cross-sectional study nested within a longitudinal multi-centre inception cohort study. Participants were families and young people (aged under 18 years) newly diagnosed with childhood uveitis. Using a validated tool, the Health Foundation COVID-19 Survey, we captured qualitative and quantitative data. Quantitative data were analysed using descriptive summary statistics. Qualitative, free text responses were analysed using content and thematic analysis.
Results: Responses received from 60 families between 1st September 2020 and 30th March 2022 were analysed. Despite two in five reporting challenges in accessing medication, the majority felt comfortable accessing healthcare services (8%, 95% CI 3 - 18%, of participants expressed discomfort, versus 28%, 95% CI 26 – 28% of general population). Thematic analysis identified five themes: the value of protected spaces to safely access care; the positive role of digital health tools the experience of immature telemedicine; disintegration of care; and dealing with uncertainty.
Discussion: Our findings suggest that families of children with a rare chronic condition had greater confidence in accessing healthcare during the pandemic than the general population. Nevertheless, to ensure more robust health services for such populations in future times of disruption, developments in telemedicine should be directly informed by the experiences of those with rare disease. The development of new healthcare processes which ensure the whole healthcare team has adequate information to support families should be prioritised.

Item Type:	Other
Uncontrolled Keywords:	uveitis; patient experience; rare disease; Covid
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > R Medicine (General) R Medicine > RT Nursing
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Vulnerable Children and Families Faculty of Education, Health & Human Sciences > School of Human Sciences (HUM)
Related URLs:	Publisher
Last Modified:	01 Feb 2024 10:57
URI:	http://gala.gre.ac.uk/id/eprint/45650

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