DEFINING RESEARCH PRIORITIES FOR PEOPLE LIVING WITH HTLV-1 THROUGH PATIENT/PUBLIC INVOLVEMENT AND ENGAGEMENT(PPIE) WORKSHOPS

A. Adonis^1,2, A.-M. Russell³, H. Diallo⁴, M. Preston⁴, A. Shields⁴, S. Strachan⁴, S. Young⁵, S. Ashford⁶, G.P. Taylor⁷, E. Cassidy⁸

¹Imperial College Healthcare NHS Trust, London, United Kingdom, ²University College London, London, United Kingdom, ³Institute of Health Research University of Exeter, Exeter, United Kingdom, ⁴PPI Participant, London, United Kingdom, ⁵PPI participant, London, United Kingdom, ⁶Kings College London, London, United Kingdom, ⁷Imperial College London, London, United Kingdom, ⁸Freelance Qualitative Researcher, London, United Kingdom

Background: Human T-cell Lymphotrophic Virus type1(HTLV-1) affects 5-10 million people worldwide. Approximately 300,000 people (2.5-4.5%) develop HTLV-1-associated myelopathy(HAM). Asymptomatic carriers may or may not develop HAM and live with the associated lifelong uncertainty about their relative risk. Active Patient and Public Involvement and Engagement (PPIE) in priority setting for futureresearch, brings focus to the relevant person-centred questions and priorities. Little is known about how HTLV-1 impacts on everyday life and what patients need from healthcare services. Through a series of patient involvement workshops, we explored the unique perspectives of those living with HTLV-1, to better understand their lived experiences and identified how to improve healthcare services configuration to optimally meet patients’ and families’ needs.

Purpose: To identify patients priority research questions about diagnosis, treatment and management of HTLV1 to inform healthcare service provision, national policy and future doctoral research aligned with the priorities of those impacted by HTLV1.

Methods: Participants recruited through specialist HTLV-1 clinics in England attended six 90-minute virtual workshops over 10 months, and two 60-minute consolidation workshops.Content evolved iteratively from topic focussed group discussions. All workshops were audio-visually recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final evaluation session explored the experiences of workshop participation.

Results: Twenty-seven people with HTLV-1 engaged with the workshops with 16 (60%) to 22 (80%) participants attending each meeting. The majority were diagnosed with HAM (n=22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued involvement in shaping research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life.

Conclusions: This is the first of this type of research engagement with people with HTLV-1 in the UK. Participants identified several avenues of investigation that should lead to improvements in health care services and HRQL. Participants believed the workshops signified the start of a conversation to progress person-centred and meaningful research in HTLV-1.

Implications: What matters to each unique individual living with HTLV1 and health-related quality-of-life (HRQoL) is worthy of enquiry. This PPIE series, identifies several avenues of investigation to improve healthcare services and HRQL. Participants described the impact of HTLV-1 on everyday life, identified unmet needs and offered solutions for health service re-configuration. They recognised that participation in these workshops formed a community and the start of the conversation to progress person-centred and meaningful research. Participants appreciated the value of their individual and collective voices to advocate for research important to them, for tangible change to happen.

Funding acknowledgements: Adine Adonis, NIHR Pre-doctoral Fellow, NIHR301126, was funded by Health Education England (HEE) / National Institute for Health Research (NIHR)

Keywords:
Patient and Public Involvement and Engagement
HTLV-1
Neurology

Topics:
Neurology
Professional practice: other
Research methodology, knowledge translation & implementation science

Did this work require ethics approval? No

Reason: patient and public involvement did not need ethical approval