Title: The HoPE Study: Characterising Housebound people and their unmet Primary healthcare needs: a mixed methods study in the south west of England
Funder: Department of Health and Social Care

Abstract: RESEARCH QUESTION What are the healthcare needs of housebound people and how well are their needs being met by the current healthcare system? BACKGROUND UK research about housebound patients, who are unable to attend GPs and rely on home visits, is lacking. Studies outside the UK have shown housebound patients experience higher rates of physical and mental health problems, social deprivation and mortality compared to non-housebound patients. A French study found being housebound was associated with greater unmet healthcare need. In the UK, 1-in-5 people 85y are estimated to be housebound (~340,000 people). This is the fastest growing age group - set to double by 2041 and treble by 2066. Despite this, home visit rates are falling and, in 2019, GP representatives in England voted to remove home visits from the GP contract, replacing them with an acute visiting service. This highlights the important, growing gap in providing proactive and anticipatory care for this vulnerable and complex patient group. AIM To describe the prevalence, characteristics, healthcare use and unmet healthcare needs of housebound patients. OBJECTIVES To develop a definition of housebound status that is relevant to the UK and can be applied in this and future research studies To describe the prevalence, characteristics and healthcare utilisation of housebound patients To describe the unmet healthcare needs of housebound people and the barriers and enablers to delivering effective primary healthcareMETHODSPhase 1: Rapid review of the literature and consensus study using adapted RAND appropriateness method (months 1-12). I will use systematic review methodology to examine how housebound status has been defined within the UK literature, including policy documents. Patient, clinical and academic experts will assess each definition and develop a consensus definition of housebound for phase 2 and 3. Phase 2: Quantitative study of 12 GP practices in south-west England (months 1-33).I will recruit 12 practices with varied socio-demographic patient characteristics and identify (using approaches I've already developed) housebound patients (18y) by searching GP records and consulting GPs and district nurses. Nursing home, residential home and non-housebound patients will be identified for comparison. Anonymised data will be extracted for all 4 patient groups, including socio-demographic characteristics, long-term conditions, medications, healthcare utilisation and continuity of care.Phase 3: Qualitative study of patients, carers and healthcare professionals (months 15-54). Phase 3 has 2 parts: (a) 3 longitudinal interviews with ~20 patients and ~10 carers, including some with low-level English fluency, to explore their experience of care, and areas of unmet healthcare need (~60 interviews with some joint patient/carer interviews, high attrition is anticipated); (b) 4 focus groups with GPs, district nurses, pharmacists, social prescribers and GP-based paramedics to explore barriers and enablers to delivering effective primary healthcare. ANTICIPATED IMPACT AND DISSEMINATION This research is novel and will fill an important evidence gap. The findings will provide evidence to policymakers of unmet healthcare need for complex housebound patients and will inform postdoctoral research to develop and test the feasibility of a health service intervention to improve healthcare outcomes for housebound patients.

Lay abstract: BACKGROUND People who are housebound cannot attend the doctor's surgery and rely on home visits for community medical care. Research in other countries has shown that housebound people have more mental and physical health problems than other people, and are less likely to have their healthcare needs met. In the UK, about 1-in-5 people aged 85 years or over are thought to be housebound (around 340,000 people). This number is set to double by 2041 and treble by 2066. Despite this, GPs are doing fewer home visits than before. In November 2019, because of high workload pressures, GP representatives voted to remove visits from their NHS contract. There is little research about housebound people in the UK. This research will help us find out more about housebound people and their unmet healthcare needs. This will help in planning services and providing better healthcare in the future. AIM To find out how many people are housebound, the characteristics of people who are housebound, and what their unmet healthcare needs are. METHODS The research has 3 parts. Part 1 will decide how we should define what it means to be housebound. I will start by looking at scientific and policy reports to find out how others have defined being housebound. A group of patients, health and social care professionals and researchers will discuss these definitions and agree a definition which can be used in UK research, including parts 2 and 3 of this study. Part 2 will find out more about the number and characteristics of housebound people, what care they get from their practice, and how this compares with other patients. For 12 surgeries in south-west England, I will identify housebound, non-housebound, nursing home and residential home patients (18y) and extract information about them (e.g. age, gender, health conditions, medicines, health care appointments) from their GP records but without their names or personal details.Part 3 will explore the unmet healthcare needs of housebound people and factors that affect how healthcare is provided. I will interview 20 housebound people and 10 carers about their experiences of care and how it could be improved. I will also ask about social care/support and social isolation. Men and women of different ages and from different backgrounds will be interviewed. For patients with low-level English fluency, patient information materials will be translated and a phone interpreter service will be used. Two follow-up interviews will be done at 4-month intervals to see whether things change over time. I will also carry out focus groups of different healthcare professionals to find out what helps them or stops them providing good care. PATIENT AND PUBLIC INVOLVEMENTTen people who are housebound or semi-housebound have helped design this research, including 2 housebound people and 1 carer visited at home; and a group of 7 older South Asian women, including some with low-level English fluency. I will meet these people in person (or by phone/video if necessary due to COVID-19) every 6 months during the 5-year study, accompanied by a lay co-facilitator. The PPI members will help make sure the research is relevant and not a burden to patients, help with writing information leaflets etc, and help with explaining what we find in ways that are clear and easy to understand. SHARING THE FINDINGS I will publicise the findings in research journals, conferences, blogs and social media to reach a wide audience. I plan to hold a national workshop with patients/charities/health professionals/policymakers to discuss the findings and share ideas about improving healthcare services for housebound people. A summary of the findings will be posted to research participants (translated as needed).

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE