Developing care-home research challenges and opportunities Terry Quinn Lecturer Geriatric Medicine Developing care-home research challenges and opportunities

Developing care-home research challenges and challenges Terry Quinn Lecturer Geriatric Medicine Developing care-home research challenges and challenges

Developing care-home research challenges and opportunities Terry Quinn Emma Law Lecturer Geriatric Medicine Scottish Dementia CRN Developing care-home research challenges and opportunities

Care-home research CHALLENGES Big numbers

Population change age over 75

33,000 places required 57,000 places required

UK 400,000 care-home residents Care-Homes in numbers UK 400,000 care-home residents England 376,250 places in 103331 homes Wales 27,700 places in 1,164 homes Northern Ireland 9,485 places in 464 homes 4% of UK population aged over 65 20% of UK population aged over 85 40% of UK moderate-severe dementia

2012: 912 registered care-homes 38,399 places Scottish Care-Homes In Scotland 2012: 912 registered care-homes 38,399 places 2008: 1,426 registered care-homes 2000: 1,459 registered care-homes England 376,250 places in 10,3331 homes UK 400,000 Wales 27,700 places in 1,164 homes N’ Ireland 9,485 places in 464 homes Scotland 38,399 places in 912 homes

Care-home research CHALLENGES Big numbers OPPORTUNITIES Big numbers

Care-homes in context Prevalence (Scotland) Care-homes 38,399 COPD   Prevalence (Scotland) Care-homes 38,399 COPD Heart failure Ischaemic heart disease Lung cancer Parkinson’s disease Stroke

Care-homes in context Prevalence (Scotland) Care-homes 38,399 COPD   Prevalence (Scotland) Care-homes 38,399 COPD 90,000 Heart failure Ischaemic heart disease 2000,000 Lung cancer Parkinson’s disease Stroke

Care-homes in context Prevalence (Scotland) Care-homes 38,399 COPD   Prevalence (Scotland) Care-homes 38,399 COPD 90,000 Heart failure 37,305 Ischaemic heart disease 2000,000 Lung cancer 20,747 Parkinson’s disease 5,890 Stroke 12,657

NIH funding 2012 ($million) Care-homes in context   Prevalence (Scotland) NIH funding 2012 ($million) Care-homes 38,399 COPD 90,000 Heart failure 37,305 Ischaemic heart disease 2000,000 Lung cancer 20,747 Parkinson’s disease 5,890 Stroke 12,657

NIH funding 2012 ($million) Care-homes in context   Prevalence (Scotland) NIH funding 2012 ($million) Care-homes 38,399 COPD 90,000 Heart failure 37,305 Ischaemic heart disease 2000,000 $2000 Lung cancer 20,747 Parkinson’s disease 5,890 Stroke 12,657 $316

NIH funding 2012 ($million) Care-homes in context   Prevalence (Scotland) NIH funding 2012 ($million) Care-homes 38,399 COPD 90,000 $108 Heart failure 37,305 $204 Ischaemic heart disease 2000,000 $2000 Lung cancer 20,747 $500 Parkinson’s disease 5,890 $151 Stroke 12,657 $316

NIH funding 2012 ($million) Care-homes in context   Prevalence (Scotland) NIH funding 2012 ($million) Care-homes 38,399 $0 COPD 90,000 $108 Heart failure 37,305 $204 Ischaemic heart disease 2000,000 $2000 Lung cancer 20,747 $500 Parkinson’s disease 5,890 $151 Stroke 12,657 $316

Care-home research CHALLENGES Big numbers Heterogeneity OPPORTUNITIES Big numbers

What’s in a name ? Care-home Residential setting, for older people…. residents have access to on-site care… do not legally own the accommodation Care-home

Residential social care What’s in a name ? Care-home Nursing home Residential home Residential social care

Hospital long stay care NHS long term care What’s in a name ? Hospital long stay care NHS long term care Residential social care Hospice Residential home Aged care facility Care-home Convalescent care Nursing home Institutional care Respite care Very sheltered housing EMI care-home Sheltered housing Senior living facility

Care-home heterogeneity

Care-home heterogeneity

Care-home research CHALLENGES Big numbers Heterogeneity OPPORTUNITIES Big numbers 2. Heterogeneity

What’s in a name ? NHS long term care Sheltered housing

Care-home research CHALLENGES Big numbers Heterogeneity 3. Limited evidence base OPPORTUNITIES Big numbers 2. Heterogeneity

Geriatric Giants

Intellectual impairment Instability Intellectual impairment Geriatric Giants Immobility Incontinence

The care-home literature

The care-home literature “In research publications that involve nursing home residents, basic standards of research ethics are not typically reported” Karlawish JH JAGS 1999;47:76-81 “Given the small number and poor quality of trials conducted among NH residents there is a limited body of evidence that could be used to establish quality of care standards or pay for performance criteria. Long-term care providers face a great challenge in practicing evidence-based medicine.” Cheng HY J Am Med Directors 2009;10:28-35

Stroke versus care-home research

Stroke versus care-home research

Stroke versus care-home research

Care-home research – who cares? NATIONAL CARE HOMES RESEARCH AND DEVELOPMENT FORUM

Care-home research – who cares? NATIONAL CARE HOMES RESEARCH AND DEVELOPMENT FORUM

Care-home research CHALLENGES Big numbers Heterogeneity 3. Limited evidence base OPPORTUNITIES Big numbers 2. Heterogeneity 3. Limited evidence base

Care-home versus stroke research

Care-home versus stroke research A novel idea for a stroke research project

Care-home versus stroke research A novel idea for a stroke research project Novel ideas for care-homes research

Intellectual impairment Instability Intellectual impairment Geriatric Giants Immobility Incontinence

Geriatric research Screening for cognitive problems in care-homes Investigate recurrent falls in care-homes Geriatric research Treating faecal incontinence in care-homes Predict functional decline in care-home residents

Care-home research CHALLENGES Big numbers Heterogeneity 3. Limited evidence base 4. Its not the NHS OPPORTUNITIES Big numbers 2. Heterogeneity 3. Limited evidence base

Care-home staffing 69% private sector 13% voluntary sector Care home staff: 507,060 (registered nurses: 6,000) 20% care-home staff born overseas 33% in post less than three years Modest pay (councils £7.73 voluntary £7.03 private £6.00) Culture of risk avoidance (very) limited research experience

Care-home research CHALLENGES Big numbers Heterogeneity 3. Limited evidence base 4. Its not the NHS OPPORTUNITIES Big numbers 2. Heterogeneity 3. Limited evidence base 4. Its not the NHS

In certain key areas the NHS is fundamentally “anti-research”

Care Home Medical Practice Established 2006 BGS example of good practice Care-home team cover 3,400 residents in 70 homes Coves most nursing home residents in Glasgow Those people working in the NHMP: have chosen to specialise in this area of care are an experienced, enthusiastic team (with dedicated: dietician, SLT, pharmacy, liaison & palliative nurses) promote multi-disciplinary & multiagency working have central IT support

Care-home research CHALLENGES Big numbers Heterogeneity 3. Limited evidence base 4. Its not the NHS 5. Morbidity/mortality OPPORTUNITIES Big numbers 2. Heterogeneity 3. Limited evidence base 4. Its not the NHS

Morbidity/mortality in care-home 76% poor mobility 71% incontinent 50% dependent ADL 7.2 medications (median) 78% cognitive impairment 20% challenging behaviour Average length of stay male: 1-2 years female: 2-3 years

Morbidity/mortality in care-home 76% poor mobility 71% incontinent 50% dependent ADL 7.2 medications (median) 78% cognitive impairment 20% challenging behaviour LOS male: 1-2 years female: 2-3 years Implications for follow up and review Implications for pharmacological intervention Implications for capacity / consent Implications for adherence Implications for outcomes / endpoints Implications for length of follow up

Care-home research CHALLENGES Big numbers Heterogeneity 3. Limited evidence base 4. Its not the NHS 5. Morbidity/mortality OPPORTUNITIES Big numbers 2. Heterogeneity 3. Limited evidence base 4. Its not the NHS 5. Morbidity/mortality

Thinking beyond the RCT Education and training Methodological research The classical RCT Systematic literature review Qualitative and questionnaire Test accuracy Care-home “epidemiology”

Developing care-home research challenges and opportunities Terry Quinn Emma Law Lecturer Geriatric Medicine Scottish Dementia CRN Developing care-home research challenges and opportunities

The Research Ready Care Home Network will support the coming together of Care Homes, Researchers and Residents to support improvements in health and care. www.dendron.nihr.ac.uk/enrich 58

Scotland Scottish Dementia Clinical Research Network supports: NHS, University of Glasgow, University of Edinburgh, University of Western Scotland University of Stirling, Care inspectorate, Dementia Network, Stroke Network, Primary care - Nursing Homes Medical Practice, NHS Education Scotland, Scottish Care, Alzheimer Scotland

ENRICH Cascade throughout Scotland using networks Website – suitable for Scotland audience Materials – Can we use them? Database – links to network database and register 3 levels - Support, Assist, Deliver

Care home research - questions What are the priority research questions? (JLA methodology) What research is already out there? (In conjunction with Cochrane) What are the group members’ interests? Protocol development