Translating patient needs into medical device development: co-design of a photoprotection visor for Xeroderma Pigmentosum using qualitative interviews

Graham, Tanya and Sooriah, Sangeeta and Chang, Yan-Shing and Hashimdeen, Shaikh and Meydan, Turgut and Grocott, Patricia (2024) Translating patient needs into medical device development: co-design of a photoprotection visor for Xeroderma Pigmentosum using qualitative interviews. Orphanet Journal of Rare Diseases, 19 (1). ISSN 1750-1172

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Introduction: People with Xeroderma Pigmentosum (XP) have a heightened sensitivity to ultraviolet radiation (UVR) and are advised to wear photoprotective clothing including a visor covering the face and neck. Photoprotective visors are homemade and predominately worn by children with decreasing frequency as age increases. To improve upon the current design and efficacy we were tasked with developing a prototype visor to meet patients’ needs. Methods: Adopting a codesign methodology, patients’ experiences of wearing a visor and patient and carer views of emerging prototypes were explored during interviews. A thematic analysis was conducted in parallel with data collection and themes were interpreted into design cues; desirable attributes of a visor that would counteract the negative user experiences and meet the requirements described by patients and carers. The design cues guided the iterative development of prototypes by academic engineers. Results: Twenty-four interviews were conducted with patients and carers. Thematic analysis resulted in the following five themes: Being safe from UVR exposure; self-consciousness; temperature effects; acoustic difficulties; and material properties. The following design cues were developed from the themes respectively; materials and design with high UVR protection; ability to customise with own headwear; ventilation to reduce steaming up; acoustic functionality to enable hearing and speech; foldable, portable, and easy to put on and take off. Conclusions: It is important to understand people’s experiences of using medical devices to improve their safety, efficiency and user satisfaction. The user experience themes and design cues, informed the iterative development of low fidelity visor prototypes as part of a codesign process. These design cues and responses to the prototypes are guiding commercial manufacturing and regulatory approval. The visor can then be prescribed to patients, providing an equitable service of care.

Item Type: Article
Additional Information: ** From Springer Nature via Jisc Publications Router ** History: received 01-02-2023; accepted 19-12-2023; registration 20-12-2023; epub 13-02-2024; online 13-02-2024; collection 12-2024. ** Licence for this article: ** Acknowledgements: The authors would like to thank the adults, children with XP and their parents for taking part in the study. We would also like to thank the PPI leads on the project: Sandra Webb from the National Xeroderma Pigmentosum Support Group at Guy’s and St Thomas’ NHS Foundation Trust, London and Nicola Miller from Action for XP and Clinical Nurse Specialists, Sally Turner and Tanya Henshaw from the National Xeroderma Pigmentosum Service in Guy’s and St Thomas’s NHS Foundation Trust, London. We thank Catherine Shaw, King’s College London BSc Adult Nursing Student, for her contributions to the interviews and thematic analysis. Acknowledgements also go to collaborators from the Medical Physics Team at Guy’s and St Thomas’s NHS Foundation Trust: Dr Fiammetta Fedele, Dr Paul Freeman and Ms Grace Aneju for advice on UVR protection and testing of sample materials and Ms Ruth Fiaderio and Anne Davies in-house designers, for support with the co-design process. Commercial manufacturing prototyping has also been undertaken by the Manufacturing Technology Centre: Phillipa Davies, Rob Wingrave, Neil Blundred. Authors information Patients with rare, incurable, progressive conditions need medical devices to mitigate condition-related deformities. Our research programme has enabled patients to reform their devices, improve independence and outcomes (see details below of grants awarded). We have also created commercial opportunities for UK companies. Over 300 patients and families have worked with clinicians, academic engineers, and manufacturers to co-design alternatives to ‘making-do’ with existing devices: dressing gloves and a range of garments instead of bulky dressings and bandages wrapped around fingers; adjustable splints versus fixed splints to straighten contractures; co-designed visors, rather than home-made ones, for UVR protection (this manuscript). We have also codesigned patient recorded outcome measures to enable remote communication and treatment via a hand therapy online system with clinical specialists at Guy’s and St Thomas’s NHS Foundation Trust. Relevant Grants awarded PG Principal Investigator/TG Co-applicant: National Institute of Health Research, Invention for Innovation New Product Development Generation and evaLuation Of hand therapy deVices for Epidermolysis bullosa and Dupuytrens project: Adjustable Splint Glove manufacturing and commercialisation Amount: £1,349,787, Duration: November 2019-October 2022. TG Principal Investigator PG/YSC Co-applicants: Engineering and Physical Sciences Research Council (EPSRC) Xeroderma Pigmentosum Photoprotection visor: commercial development of co-designed prototypes. Amount: £50,782 Duration: August 2021- January 2022. PG Principal Investigator/YSC Co-applicant: National Institute of Health Research Invention for Innovation New Product Development. Co-Design and Testing of a of a specialised visor for photoprotection Amount: £755,636. Duration: November 2017-April 2020. PG Principal Investigator/TG Co-applicant National Institute of Health Research Invention for Innovation New Product Development. Generation and evaLuation Of hand therapy deVices for Epidermolysis Bullosa Amount: £1,672,975 Duration: October 2013-September 2017. PG Co-Investigator Woundcare Research for Appropriate Products: EPSRC GR/R39023/01. Amount: £1,077,037 Duration: 2001-2004.
Uncontrolled Keywords: Experienced-based codesign, Dermatology, Skin cancer, Qualitative research, Usability, Xeroderma Pigmentosum, Medical device development, Photoprotection, DNA damage
Subjects: R Medicine > RL Dermatology
T Technology > T Technology (General)
Divisions: Institutes and Academies > Wales Institute for Science & Art (WISA) > Academic Discipline: Engineering
SWORD Depositor: JISC Publications Router
Depositing User: JISC Publications Router
Date Deposited: 16 Feb 2024 11:53
Last Modified: 16 Feb 2024 11:55

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