K Bristowe1, P Clift2, R James3, J Josh4, M Platt4, J Whetham5, E Nixon5, F A Post2, K McQuillan6, C Ní Cheallaigh6, Fem Murtagh7, J Anderson8, A K Sullivan9, R Harding1. 1. King's College London, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, London, UK. 2. King's College Hospital NHS Foundation Trust, London, UK. 3. University of Sussex, Brighton, UK. 4. UK-CAB, London, UK. 5. Brighton and Sussex University Hospitals NHS Trust, Brighton, UK. 6. St James's Hospital Dublin and Trinity College Dublin, Dublin, Ireland. 7. Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK. 8. Homerton University Hospital NHS Foundation Trust, London, UK. 9. Chelsea and Westminster Hospital NHS Foundation Trust, London, UK.
Abstract
OBJECTIVES: People living with HIV (PLWH) have multidimensional concerns requiring person-centred care. Routine use of patient-reported outcome measures (PROMs) improves outcomes. No brief PROM currently reflects the breadth of concerns for PLWH. This study sought to identify priority outcomes for PLWH, model current practice, explore views on introducing PROMs into routine care, and devise a model for person-centred care incorporating the PROM. METHODS: A cross-national multi-centre study (London, Brighton and Dublin) was carried out. Semi-structured qualitative interviews with adult PLWH, HIV health care professionals and HIV commissioners (responsible for planning and commissioning services) were performed. Interviews were analysed using thematic and framework analysis. RESULTS: PLWH (n = 28), professionals (n = 21) and commissioners (n = 8) described concerns related to living with HIV across six domains: physical (e.g. pain and gastrointestinal symptoms), cognitive (e.g. memory and sleep), psychological (e.g. anxiety and depression), social (e.g. isolation and intimacy), welfare (e.g. finances and fears regarding change of immigration status), and information (e.g. long-term outcomes) needs. Themes were highly inter-related, impacting across domains of need (e.g. physical and cognitive problems impacting on psychological and social wellbeing). Perceived benefits of using PROMs in routine HIV care included improved person-centredness, patient empowerment, fewer missed concerns, increased engagement with services, and informed planning of services. Potential challenges included heterogeneity of PLWH, literacy, and utility for those who struggle to engage with care. CONCLUSIONS: This study presents a novel model of person-centred care incorporating an HIV-specific PROM. The model reflects priorities of key stakeholders. Explicit use of PROMs in routine HIV care could afford benefits for PLWH, clinical teams and commissioners.
OBJECTIVES:People living with HIV (PLWH) have multidimensional concerns requiring person-centred care. Routine use of patient-reported outcome measures (PROMs) improves outcomes. No brief PROM currently reflects the breadth of concerns for PLWH. This study sought to identify priority outcomes for PLWH, model current practice, explore views on introducing PROMs into routine care, and devise a model for person-centred care incorporating the PROM. METHODS: A cross-national multi-centre study (London, Brighton and Dublin) was carried out. Semi-structured qualitative interviews with adult PLWH, HIV health care professionals and HIV commissioners (responsible for planning and commissioning services) were performed. Interviews were analysed using thematic and framework analysis. RESULTS: PLWH (n = 28), professionals (n = 21) and commissioners (n = 8) described concerns related to living with HIV across six domains: physical (e.g. pain and gastrointestinal symptoms), cognitive (e.g. memory and sleep), psychological (e.g. anxiety and depression), social (e.g. isolation and intimacy), welfare (e.g. finances and fears regarding change of immigration status), and information (e.g. long-term outcomes) needs. Themes were highly inter-related, impacting across domains of need (e.g. physical and cognitive problems impacting on psychological and social wellbeing). Perceived benefits of using PROMs in routine HIV care included improved person-centredness, patient empowerment, fewer missed concerns, increased engagement with services, and informed planning of services. Potential challenges included heterogeneity of PLWH, literacy, and utility for those who struggle to engage with care. CONCLUSIONS: This study presents a novel model of person-centred care incorporating an HIV-specific PROM. The model reflects priorities of key stakeholders. Explicit use of PROMs in routine HIV care could afford benefits for PLWH, clinical teams and commissioners.
Authors: Heather M Derry-Vick; Carrie D Johnston; Mark Brennan-Ing; Chelsie O Burchett; Nina Glesby; Yuan-Shan Zhu; Eugenia L Siegler; Marshall J Glesby Journal: Psychosom Med Date: 2022-07-27 Impact factor: 3.864
Authors: Caroline A Sabin; Richard Harding; Nicki Doyle; Susan Redline; Davide de Francesco; Patrick W G Mallon; Frank A Post; Marta Boffito; Memory Sachikonye; Adam Geressu; Alan Winston; Ken M Kunisaki Journal: J Acquir Immune Defic Syndr Date: 2020-09-01 Impact factor: 3.771
Authors: Kelly Kathleen O'Brien; David Kietrys; Mary Lou Galantino; James Scott Parrott; Tracy Davis; Quang Tran; Rachel Aubry; Patricia Solomon Journal: J Int Assoc Provid AIDS Care Date: 2019 Jan-Dec
Authors: Chinyere Okoli; Patricia de Los Rios; Anton Eremin; Gary Brough; Benjamin Young; Duncan Short Journal: Prev Chronic Dis Date: 2020-03-05 Impact factor: 2.830
Authors: Kelly K O'Brien; Mendwas Dzingina; Richard Harding; Wei Gao; Eve Namisango; Lisa Avery; Aileen M Davis Journal: Health Qual Life Outcomes Date: 2021-01-06 Impact factor: 3.186
Authors: Maria José Fuster-RuizdeApodaca; Kelly Safreed-Harmon; Marta Pastor de la Cal; Ana Laguia; Denise Naniche; Jeffrey V Lazarus Journal: Front Psychol Date: 2021-06-09
Authors: Jeffrey V Lazarus; Kelly Safreed-Harmon; Adeeba Kamarulzaman; Jane Anderson; Ricardo Baptista Leite; Georg Behrens; Linda-Gail Bekker; Sanjay Bhagani; Darren Brown; Graham Brown; Susan Buchbinder; Carlos Caceres; Pedro E Cahn; Patrizia Carrieri; Georgina Caswell; Graham S Cooke; Antonella d'Arminio Monforte; Nikos Dedes; Julia Del Amo; Richard Elliott; Wafaa M El-Sadr; María José Fuster-Ruiz de Apodaca; Giovanni Guaraldi; Tim Hallett; Richard Harding; Margaret Hellard; Shabbar Jaffar; Meaghan Kall; Marina Klein; Sharon R Lewin; Ken Mayer; Jose A Pérez-Molina; Doreen Moraa; Denise Naniche; Denis Nash; Teymur Noori; Anton Pozniak; Reena Rajasuriar; Peter Reiss; Nesrine Rizk; Jürgen Rockstroh; Diana Romero; Caroline Sabin; David Serwadda; Laura Waters Journal: Nat Commun Date: 2021-07-16 Impact factor: 14.919