Title: Developing NHS services to meet the needs of an ageing HIV population: the service user’s perspective
Funder: Department of Health (England)

Abstract: Background Mortality rates have dramatically improved as a result of increasingly effective antiretroviral treatment. Increased survival, combined with later age at diagnosis, has resulted in a disproportionate growth in the proportion of older individuals accessing care. While complications due to HIV are now rare in treated individuals, diseases not historically associated with HIV, but well recognised as complications of ageing, including cardiovascular disease, bone mineral density loss, cancer, cognitive decline, hepatic and renal dysfunction are increasingly identified and appear to be occurring more frequently and at a younger age than among HIV negative populations. The care of HIV positive individuals has historically been provided within specialist clinics. However, HIV specialists may not have the necessary experience to manage and treat non-HIV and age-related comorbidities and a different model of care may be preferable from a patient perspective. Over recent years, various models of care have evolved to detect and manage comorbidites. Although the Department of Health recommends developing services around the preferences of patients, there is little research in this area. This current project has been designed to quantify patient preferences for the future delivery of HIV healthcare. Aims of the work The overall aim of this study is to identify and quantify the preferences of service users for the future delivery of HIV services, using Discrete Choice Experiment (DCE) methodology. Plan of investigation Workpackage 1 will identify which aspects of HIV healthcare services are important to service users. The findings of a systematic review of the literature will inform the discussion guide for a subsequent focus group study. Focus groups will take place in London and Brighton. A sampling strategy will ensure that representation of the groups most affected by HIV in the UK. Participants will be asked about their experiences of HIV healthcare; likes and dislikes of the way services are currently provided and how future services could be provided to meet their needs. Focus group discussions will be recorded and transcribed and data will be analysed using a framework analysis approach. Workpackage 2 will quantify patients’ preferences for different models of HIV healthcare using a Discrete Choice Experiment (DCE). This methodology commonly used by health economists for assessing patients’ preferences. The data from the systematic review and qualitative analysis will be used to develop a questionnaire (using DCE). The questionnaire will ask participants to choose between different service options. After piloting, the questionnaire will be distributed to people attending specialist HIV clinics in Sussex, Surrey and London. The results will quantify the relative importance to service users of different aspects of healthcare services, and determine whether preferences for the delivery of HIV healthcare differ by service user characteristics, including age, gender, ethnicity and sexual preference. Summary of the potential benefits to patients and the NHS Involving patients in decisions about how their HIV care is provided is likely to increase satisfaction with services, improve attendance and adherence to treatment. Developing improved services may result in better detection and management of comorbidities, prompt and appropriate treatment, fewer medications and a reduced risk of drug-drug interactions, potentially improving quality of life, morbidity and mortality. Good management of chronic illness, including comorbidites, may reduce hospital admissions and medications, benefitting patients and reducing costs for the NHS.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: INFECTION