Title: Understanding late diagnosis of HIV in people aged 50 and above
Funder: Department of Health and Social Care

Abstract: Background Effective treatment has transformed HIV into a manageable long term condition with normal life expectancy, provided HIV is diagnosed and treatment initiated in a timely way. Late diagnosis (LD) of HIV is associated with significantly higher rates of morbidity and mortality, increased treatment costs and onward transmission of HIV. Rates of LD are disproportionately high among older people (those age 50 years and above) and poor health outcomes associated with LD are exacerbated in this group. To date there has been very little research to characterise or understand reasons for LD in this older group. Efforts to reduce LD in the UK include British HIV Guidelines defining the circumstances under which an HIV test should be offered. According to these guidelines, all patients presenting to primary or secondary healthcare with a clinical indicator disease (CID) should be offered an HIV test. Pilot studies suggest that although HIV testing is acceptable to patients, there is reluctance among clinicians to offer patients a test. Research suggests that the predominant reason for missed diagnosis of HIV is the failure to recognise a CID. However, there is a lack of research specifically looking at clinician or patient barriers to HIV testing in older people. Aims To inform the design of an intervention to reduce LD of HIV in older people (age 50 years and above) by: Conducting a systematic literature review to identify factors associated with LD of HIV in older people. Utilising existing data sets to better characterise LD of HIV in older people. Identifying barriers to HIV testing in older people who were diagnosed late with HIV. Identifying health care professional (HCP) barriers to offering HIV tests to older people. Plan of investigation The research will be conducted in four phases: Phase 1 A systematic review of the literature will be conducted to identify factors associated with LD of HIV in older people. Phase 2 Data from existing national datasets will be interrogated and merged to better characterise LD of HIV in older people. The analysis will reassess the definition of late diagnosis in older people and investigate late diagnosis in each of the following age ranges: 50-59; 60-69; 70-79; 80+, identify risk factors within these age bands, and describe LD by geographical location and use of healthcare services. Phase 3 To gain an understanding of patient and clinician factors leading to LD; qualitative interviews will be conducted with HIV positive patients aged 50 and above who have been diagnosed late with HIV and with the HCPs they consulted in the year leading up to their diagnosis. Interviews will be digitally recorded, transcribed verbatim and thematically analysed. Phase 4 To identify factors associated with offering an HIV test to eligible older patients; HCPs who routinely see patients aged 50 and above with a CID will be recruited to a questionnaire based study. The questionnaire will measure barriers and facilitators to HIV testing. A medical notes review will be conducted at the time of questionnaire completion (for cross-sectional analysis) and 6 months later (for prospective analysis) to determine rates of HIV testing of patients with a CID age 50 and above. Statistical tests will be used to identify predictors of HIV testing. Potential benefits to patients and the NHS This research will inform the development of an intervention to reduce LD of HIV in older people, and is therefore expected to benefit patients within 3-5 years. A reduction in rates of LD in this group would benefit patients by reducing morbidity and mortality, the NHS through reduced healthcare costs and public health, through reduced transmission of HIV.

Lay abstract: Background HIV is now a manageable long-term condition with a normal life expectancy, provided HIV is diagnosed and treatment is started in a timely way. People who are diagnosed late (defined as diagnosis of HIV with a CD4 countRates of late diagnosis in people age 50 years and above are higher than in any other age group. In the UK, approximately half of all older people diagnosed with HIV have a late diagnosis. However, little is known about the reasons for late diagnosis in this group. Reasons for late diagnosis of HIV may include patient barriers to seeking an HIV test (such as not recognising that they may be at risk of HIV) and health care professional barriers to offering patients an HIV test. In the UK, healthcare professionals are advised to offer an HIV test to patients who have a disease that suggests that HIV may be present (called a clinical indicator disease). Despite high rates of uptake of HIV tests among patients, research suggests that these guidelines are often not followed. Aims: The main aim of this research is to inform the design of an intervention to reduce rates of late diagnosis in older people (age 50 and above) by: 1. Examining previous research to identify reasons for late diagnosis of HIV in older people. 2. Using existing datasets to better describe late diagnosis of HIV in older people . 3. Identifying barriers to HIV testing in older people who were diagnosed late with HIV. 4. Identifying health care professional barriers to offering HIV tests to older people.Design & Methods The research will be conducted in four phases: Phase 1 A systematic review of the literature will be conducted to identify factors associated with late diagnosis of HIV in older people. Phase 2 - This phase will involve analysis of large national datasets to reassess the definition of late diagnosis in older people and to describe late diagnosis of HIV in people age 50 and above. This will include describing rates of late diagnosis according to different age bands e.g. in people aged: 50-59; 60-69; 70-79; and 80+years; identifying risk factors for late diagnosis within these age bands, describing late diagnosis by geographical location and use of healthcare services.Phase 3 Research interviews will be conducted with HIV positive patients aged 50 and above who were diagnosed late with HIV within the last year and with health care professionals that they had consulted in the year leading up to their diagnosis. The purpose of the interviews will be to gain an understanding of the reasons for late diagnosis. The interviews will be digitally recorded and a written transcript of the interview will be produced. These transcripts will be analysed in order to find common themes or reasons for late diagnosis of HIV in older people. Phase 4 The results of the literature review and interviews will be used to design a questionnaire. This will be used to identify HCP barriers to offering an HIV test to patients age 50 and above who have a clinical indicator disease, and who should therefore be offered an HIV test. Health care professionals who see patients with a clinical indicator disease will be recruited from hospitals in Kent, Surrey and Sussex. Statistical tests will determine what factors measured by the questionnaire are associated with offering an HIV test to patients who have a clinical indicator disease. The results of Phases 1-4 of this research will be used to develop an intervention to reduce rates of late diagnosis in older people. Patient and public Involvement A patient who was diagnosed late with HIV has reviewed this proposal. A Patient Advisory Group will be recruited to advise on and review the study design and materials, help develop patient information and to develop a strategy for informing patients and the public about the research findings. Dissemination A plain English summary of the findings will be made available to participants and the public. The study findings will be presented at a local meeting and submitted to HIV conferences and written up for publication in Open Access journals. The Patient Advisory Group will develop a stragegy for informing patients and the public about the research.

Research activity codes: 4.3 INFLUENCES AND IMPACT
Health categories: INFECTION