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

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

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

4. Care-home research
CHALLENGES
Big numbers

5. Population change age over 75

7. 33,000 places required
57,000 places required

8. UK 400,000 care-home residents
Care-Homes in numbers
UK 400,000 care-home residents
England 376,250 places in 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

9. 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 homes
Scotland 38,399 places in homes

10. Care-home research
CHALLENGES
Big numbers
OPPORTUNITIES
Big numbers

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

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

19. 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

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

21. 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

22. Care-home heterogeneity

23. Care-home heterogeneity

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

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

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

27. Geriatric Giants

28. Intellectual impairment
Instability
Intellectual impairment
Geriatric Giants
Immobility
Incontinence

33. The care-home literature

34. 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

35. Stroke versus care-home research

36. Stroke versus care-home research

37. Stroke versus care-home research

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

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

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

41. Care-home versus stroke research

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

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

44. Intellectual impairment
Instability
Intellectual impairment
Geriatric Giants
Immobility
Incontinence

45. 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

46. 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

47. 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

48. 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

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

51. 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

52. 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

53. 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

54. 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

55. 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

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

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

58. The Research Ready Care Home Network will support the coming together of Care Homes, Researchers and Residents to support improvements in health and care. 58

59. 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

60. 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

61. 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