National Centre for Human Retrovirology, Imperial College Healthcare NHS Trust, London, UK.
Institute of Health Research, University of Exeter, Exeter, UK.
Health Expect. 2023 Dec;26(6):2418-2427. doi: 10.1111/hex.13848. Epub 2023 Aug 14.
Human T-cell lymphotropic virus type 1 (HTLV-1) is a chronic infection affecting 5-10 million people worldwide. Ten percent develop HTLV-1-associated diseases, and 3%-5% develop HTLV-1-associated myelopathy (HAM)/tropical spastic paraparesis. Low health-related quality of life (HRQoL) is a significant concern for those with HTLV-1, 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-1 health service provision.
Participants recruited through HTLV-1 clinics in England attended six 90-min virtual workshops over 10 months, and two 60-min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video-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 feedback session explored the experiences of participating in the workshops.
Twenty-seven people with HTLV-1 engaged with the workshops with up to 22 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 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.
This is the first of this type of research engagement with people with HTLV-1 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-centred and meaningful research in HTLV-1.
People living with HTLV-1 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.
人类 T 细胞嗜淋巴细胞病毒 1 型（HTLV-1）是一种慢性感染，影响全球 500 至 1000 万人。10%的人会发展为 HTLV-1 相关疾病，3%-5%的人会发展为 HTLV-1 相关脊髓病（HAM）/热带痉挛性截瘫。生活质量（HRQoL）低下是 HTLV-1 患者的一个重大问题，目前尚不清楚它如何影响日常生活，以及患者需要医疗服务提供方提供哪些服务。为了解决这一问题，我们报告了患者参与的研讨会，旨在确定 HTLV-1 卫生服务提供的研究重点。
通过英格兰的 HTLV-1 诊所招募参与者，他们参加了 10 个月内的 6 次 90 分钟的虚拟研讨会和 2 次 60 分钟的巩固研讨会。内容是通过有针对性的小组讨论逐步制定的。所有研讨会都经同意录制视频、逐字转录，并进行主题分析。参与者使用共识投票轮次，单独对他们的前 6 项研究重点进行排名，然后集体对从分析中推断出的主题的前 3 项研究重点进行排名。最后一次反馈会议探讨了参与研讨会的经验。
27 名 HTLV-1 患者参与了研讨会，每次会议最多有 22 名参与者。大多数人被诊断为 HAM（n=22）。确定的前三项研究重点是了解疾病进展、心理健康、信息和知识。参与者对被要求设定直接满足他们需求的研究重点表示赞赏，并喜欢这些研讨会。他们强调了患者代言人的重要性，他们可以促进对日常生活产生积极影响的研究。
这是英国首次与 HTLV-1 患者进行此类研究合作。参与者确定了一些可以改善医疗服务和 HRQoL 的研究方向。参与者认为，这些研讨会标志着为推进以人为本和有意义的 HTLV-1 研究而展开对话的开始。
通过患者参与研讨会，HTLV-1 患者参与了本项目的迭代设计、实施、分析、写作和传播。通过这种参与，成立了一个由患者领导的顾问小组，以协助研究结果的传播。
