@article{2b203ccce40f4b3ea4d0c88eae169f46,
title = "Positive Outcomes: Validity, reliability and responsiveness of a novel person‐centred outcome measure for people with HIV",
abstract = "OBJECTIVES: Despite successful treatment, people living with HIV experience persisting and burdensome multidimensional problems. We aimed to assess the validity, reliability and responsiveness of Positive Outcomes, a patient-reported outcome measure for use in clinical practice. METHODS: In all, 1392 outpatients in five European countries self-completed Positive Outcomes, PAM-13 (patient empowerment), PROQOL-HIV (quality of life) and FRAIL (frailty) at baseline and 12 months. Analysis assessed: (a) validity (structural, convergent and divergent, discriminant); (b) reliability (internal consistency, test-retest); and (c) responsiveness. RESULTS: An interpretable four-factor structure was identified: 'emotional wellbeing', 'interpersonal and sexual wellbeing', 'socioeconomic wellbeing' and 'physical wellbeing'. Moderate to strong convergent validity was found for three subscales of Positive Outcomes and PROQOL (ρ = -0.481 to -0.618, all p < 0.001). Divergent validity was found for total scores with weak ρ (-0.295, p < 0.001). Discriminant validity was confirmed with worse Positive Outcomes score associated with increasing odds of worse FRAIL group (4.81-fold, p < 0.001) and PAM-13 level (2.28-fold, p < 0.001). Internal consistency for total Positive Outcomes and its factors exceeded the conservative α threshold of 0.6. Test-retest reliability was established: those with stable PAM-13 and FRAIL scores also reported median Positive Outcomes change of 0. Improved PROQOL-HIV score baseline to 12 months was associated with improved Positive Outcomes score (r = -0.44, p < 0.001). CONCLUSIONS: Positive Outcomes face and content validity was previously established, and the remaining validity, reliability and responsiveness properties are now demonstrated. The items within the brief 22-item tool are designed to be actionable by health and social care professionals to facilitate the goal of person-centred care.",
keywords = "ORIGINAL RESEARCH, HIV, measurement, outcomes, person‐centredness, self‐report",
author = "{EMERGE Consortium, Horizon 2020} and Richard Harding and Jones, {Christopher Iain} and Stephen Bremner and Katherine Bristowe and Brian West and Siegert, {Richard J.} and O{\textquoteright}Brien, {Kelly K.} and J. Whetham and J. Whetham and D. Fatz and G. Weir and M. Borges and E. Teofilo and G. Rodrigues and A. Cunha and C. Fisher and S. Beaumont and B. West and M. Dutarte and {von Lingen}, {A. I.} and F. Greenhalgh and K. Block and F. Garcia and D. Garcia and {Mu{\~n}oz Pina}, R. and F. Etcheverry and L. Leal and L. Moreno and E. Gonz{\'a}lez and L. Apers and L. Mertens and S. Hoornaert and J. Begovac and S. Zekan and I. Benkovic and J. Wyatt and M. Fraser and E. Beck and S. Mandalia and P. Yfantopoulos and E.J. Gomez and P. Chausa and F.J. G{\'a}rate and F. Henwood and M. Darking and B. Marent and S. Bremner and C. Jones and C. C{\'a}ceres and Richard Harding",
note = "Funding Information: The EmERGE project has received funding from the European Union's Horizon 2020 research and innovation programme, PHC‐26‐2014: Self‐management of health and disease: citizen engagement and mHealth under grant agreement no. 643736. Funding Information: The EmERGE project has received funding from the European Union's Horizon 2020 research and innovation programme, PHC-26-2014: Self-management of health and disease: citizen engagement and mHealth under grant agreement no. 643736. The authors thank the participants and clinicians for their commitment and willingness to contribute to the EmERGE project. The scientific members of the EmERGE consortium are: J. Whetham, D. Fatz, G. Weir, J Vera Brighton and Sussex University Hospitals NHS Trust, UK; M. Borges, E. Teofilo, G. Rodrigues, A. Cunha, Centro Hospitalar De Lisboa Central, EPE, Portugal; C. Fisher, S. Beaumont, EmERGE mHealth Ltd, UK; B. West, M. Dutarte, A. I. von Lingen, F. Greenhalgh, K. Block, European Aids Treatment Group, Belgium; F. Garcia, D. Garcia, R. Mu{\~n}oz Pina, F. Etcheverry, L. Leal, L. Moreno, E. Gonz{\'a}lez, Fundacio Privada Clinic Per A La Recerca Biomedica, Spain; L. Apers, L. Mertens, S. Hoornaert, Institute of Tropical Medicine Antwerp, Belgium; J. Begovac, S. Zekan, I. Benkovic, Klinika Za Infektivne Bolesti Dr. Fran Mihaljevic, Croatia; J. Wyatt, M. Fraser, Modus Research and Innovation, UK; E. Beck, S. Mandalia, P. Yfantopoulos NPMS-HHC CIC, UK; E.J. Gomez, P. Chausa, F.J. G{\'a}rate UPM, Spain; F. Henwood, M. Darking, B. Marent, University of Brighton, UK; S. Bremner, C. Jones, University of Sussex, UK. The EmERGE advisory board includes: C. C{\'a}ceres, R. Harding, A. Le{\'o}n and E. Wallitt. KKO is supported by a Canada Research Chair in Episodic Disability and Rehabilitation with funding from the Canada Research Chairs Program. This study is independent research partly supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. POSITIVE outcomes was developed by an original grant from MACAIDS Fund to the British HIV Association (BHIVA) and was developed in partnership with BHIVA. Funding Information: KKO is supported by a Canada Research Chair in Episodic Disability and Rehabilitation with funding from the Canada Research Chairs Program. This study is independent research partly supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Publisher Copyright: {\textcopyright} 2022 The Authors. HIV Medicine published by John Wiley & Sons Ltd on behalf of British HIV Association.",
year = "2022",
month = jul,
doi = "10.1111/hiv.13224",
language = "English",
volume = "23",
pages = "673--683",
journal = "HIV MEDICINE",
issn = "1464-2662",
publisher = "Wiley-Blackwell",
number = "6",
}
