{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,14]],"date-time":"2025-05-14T01:12:40Z","timestamp":1747185160644,"version":"3.40.5"},"reference-count":37,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,8,14]],"date-time":"2023-08-14T00:00:00Z","timestamp":1691971200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2023,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Human T\u2010cell lymphotropic virus type 1 (HTLV\u20101) is a chronic infection affecting 5\u201310 million people worldwide. Ten percent develop HTLV\u20101\u2010associated diseases, and 3%\u20135% develop HTLV\u20101\u2010associated myelopathy (HAM)\/tropical spastic paraparesis. Low health\u2010related quality of life (HRQoL) is a significant concern for those with HTLV\u20101, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV\u20101 health service provision.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Participants recruited through HTLV\u20101 clinics in England attended six 90\u2010min virtual workshops over 10 months, and two 60\u2010min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video\u2010recorded 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 feedback session explored the experiences of participating in the workshops.<\/jats:p><\/jats:sec><jats:sec><jats:title>Findings<\/jats:title><jats:p>Twenty\u2010seven people with HTLV\u20101 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (<jats:italic>n<\/jats:italic>\u2009=\u200922). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>This is the first of this type of research engagement with people with HTLV\u20101 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person\u2010centred and meaningful research in HTLV\u20101.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patient or Public Contribution<\/jats:title><jats:p>People living with HTLV\u20101 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.13848","type":"journal-article","created":{"date-parts":[[2023,8,14]],"date-time":"2023-08-14T12:28:35Z","timestamp":1692016115000},"page":"2418-2427","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient research priority setting partnership in human T\u2010cell lymphotropic virus type I"],"prefix":"10.1111","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5372-8025","authenticated-orcid":false,"given":"Adine","family":"Adonis","sequence":"first","affiliation":[{"name":"National Centre for Human Retrovirology, Imperial College Healthcare NHS Trust London 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