Supporting positive patient experiences for rare disease care during disruptive times: findings from a national study

Author:

Kellett Salomey1,Tadic Valerija2,Petrushkin Harry34,Ashworth Jane56,Connor Alan7,McLoone Eibhlin8,Sharma Srilakshmi910,Agorogiannis Eleftherios9,Watts Patrick11,Hughes Edward12,Ritchie Ailsa13,Pilling Rachel14,Benzimra James15,Marsh Catherine16,Pharoah Daniel17,Choi Jessy18,Dick Andrew D1920,Rahi Jugnoo S1342021,Solebo Ameenat L13ORCID

Affiliation:

1. Population, Policy & Practice Research & Teaching, UCL Great Ormond Street Institute of Child Health, London, WC1N 1EH, UK

2. School of Human Sciences & Institute of Lifecourse Development, University of Greenwich, London, SE10 9LS, UK

3. Ophthalmology Department, Great Ormond Street Hospital, London, WC1N 3JH, UK

4. Uveitis Department, Moorfields Eye Hospital, London, EC1V 2PD, UK

5. Ophthalmology Department, Manchester NHS Foundation Trust, Manchester, M13 9WL, UK

6. Manchester Academic Health Science center (MAHSC), Manchester University, Manchester, M13 9WL, UK

7. Ophthalmology Department, Great North Children's Hospital, Newcastle upon Tyne, NE1 4LP, UK

8. Ophthalmology Department, Royal Victoria Hospital, Belfast, BT12 6BA, UK

9. Oxford Eye Hospital, University of Oxford Hospitals NHS Trust, Oxford, OX3 9DU, UK

10. Kennedy Institute of Rheumatology, University of Oxford, Oxford, OX3 7FY, UK

11. Ophthalmology Department, University Hospital of Wales, Cardiff, CF14 4XW, UK

12. Ophthalmology Department, University Hospitals Sussex NHS Foundation Trust, Sussex, BN11 2DH, UK

13. Ophthalmology Department, Guy's & St Thomas' NHS Foundation Trust, London, SE1 7EH, UK

14. Department of Ophthalmology, Bradford Teaching Hospitals NHS Trust, Bradford, BD9 6RJ, UK

15. Ophthalmology Department, RDEFT Royal Devon University Healthcare NHS Foundation Trust, Exeter, EX2 5DW, UK

16. Ophthalmology Department, Royal Bournemouth Hospital, Dorset, BH7 7DW, UK

17. Ophthalmology Department, James Paget Hospital, Great Yarmouth, NR31 6LA, UK

18. Ophthalmology Department, Sheffield Children's Hospital, Sheffield, S10 2TH, UK

19. School of Cellular & Molecular Medicine, Bristol University, Bristol, BS8 1QU, UK

20. UCL Institute of Ophthalmology, London, EC1V 9EL, UK

21. Ulverscroft Research Group, London, WC1N 1EH, UK

Funder

National Institute for Health and Care Research

Publisher

Informa UK Limited

Reference44 articles.

1. Disruption of healthcare: Will the COVID pandemic worsen non-COVID outcomes and disease outbreaks?

2. Pandemic risk: how large are the expected losses?

3. United Nations Department of Economic and Social Affairs PD. World Population Prospects 2022: Summary of Results. UN Publication (Report number UN DESA/POP/2022/TR/NO). www.un.org/development/desa/pd/content/World-Population-Prospects-2022

4. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database

5. Paediatric autoimmune and autoinflammatory conditions associated with uveitis

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