Patient research priority setting partnership in human T‐cell lymphotropic virus type I
Abstract Introduction 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...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-12-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13848 |
| _version_ | 1797633240296587264 |
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| author | Adine Adonis Anne‐Marie Russell Graham P. Taylor Melanie Preston Alpheus Shields Sue Strachan Sky Young Haissata Diallo Stephen Ashford Elizabeth Cassidy |
| author_facet | Adine Adonis Anne‐Marie Russell Graham P. Taylor Melanie Preston Alpheus Shields Sue Strachan Sky Young Haissata Diallo Stephen Ashford Elizabeth Cassidy |
| author_sort | Adine Adonis |
| collection | DOAJ |
| description | Abstract Introduction 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. Methods 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. Findings 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. Conclusion 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. Patient or Public Contribution 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. |
| first_indexed | 2024-03-11T11:51:22Z |
| format | Article |
| id | doaj.art-e5fe5a4719834c26b7e65735f7a126ff |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-03-11T11:51:22Z |
| publishDate | 2023-12-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-e5fe5a4719834c26b7e65735f7a126ff2023-11-09T06:54:53ZengWileyHealth Expectations1369-65131369-76252023-12-012662418242710.1111/hex.13848Patient research priority setting partnership in human T‐cell lymphotropic virus type IAdine Adonis0Anne‐Marie Russell1Graham P. Taylor2Melanie Preston3Alpheus Shields4Sue Strachan5Sky Young6Haissata Diallo7Stephen Ashford8Elizabeth Cassidy9National Centre for Human Retrovirology, Imperial College Healthcare NHS Trust London UKInstitute of Health Research University of Exeter Exeter UKNational Centre for Human Retrovirology, Imperial College Healthcare NHS Trust London UKPatient Collaborators London UKPatient Collaborators London UKPatient Collaborators London UKPatient Collaborators London UKPatient Collaborators London UKThe Regional Hyper‑Acute Rehabilitation Unit Northwick Park Hospital, London North West University Healthcare NHS Trust London UKFreelance Qualitative ResearcherAbstract Introduction 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. Methods 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. Findings 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. Conclusion 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. Patient or Public Contribution 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.https://doi.org/10.1111/hex.13848collaborationcommunicationHTLV‐1priority settingresearch needsuser involvement |
| spellingShingle | Adine Adonis Anne‐Marie Russell Graham P. Taylor Melanie Preston Alpheus Shields Sue Strachan Sky Young Haissata Diallo Stephen Ashford Elizabeth Cassidy Patient research priority setting partnership in human T‐cell lymphotropic virus type I Health Expectations collaboration communication HTLV‐1 priority setting research needs user involvement |
| title | Patient research priority setting partnership in human T‐cell lymphotropic virus type I |
| title_full | Patient research priority setting partnership in human T‐cell lymphotropic virus type I |
| title_fullStr | Patient research priority setting partnership in human T‐cell lymphotropic virus type I |
| title_full_unstemmed | Patient research priority setting partnership in human T‐cell lymphotropic virus type I |
| title_short | Patient research priority setting partnership in human T‐cell lymphotropic virus type I |
| title_sort | patient research priority setting partnership in human t cell lymphotropic virus type i |
| topic | collaboration communication HTLV‐1 priority setting research needs user involvement |
| url | https://doi.org/10.1111/hex.13848 |
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