1. Irish National Audit of Stroke Care (INASC) Professor Hannah McGee RCSI Professor Des ONeill TCD Dr Frances Horgan RCSI Dr Anne Hickey RCSI

2. INASC Overview Stroke – assembling the jigsaw Dr Frances Horgan INASC

3. Stroke in Ireland 3rd most common cause of death Leading cause of acquired major disability Stroke - a singular and complex illness Major concerns over adequacy of services but very little data available Aims of this project to conduct a national audit of stroke care across the trajectory of care in hospital and the community in the Republic of Ireland Council on Stroke, 2001

4. INASC First comprehensive audit

5. INASC INASC PROJECT: Six Studies March 2006-September 2007 HOSPITAL - Organisational audit - 37 hospitals………. - Clinical (chart) audit - 2570 charts ………. [based on UK Sentinel audit system] COMMUNITY - GP Survey - 204 GPs……..………………. - AHP & PHN survey…75 professionals….. - Patient & carer survey…139 patients, 72 carers… - Nursing home survey…60 homes …….…

6. INASC Hospital Audit - Methods Organisational Audit: Aim - Audit of the organisational aspects of stroke care in acute hospitals with regard to resources for organised stroke care Structured face-to-face interview with Management Team Clinical Audit: Aim: Audit of Stroke Care - review clinical case notes (2,570) for representative sample of patients Charts identified for Jan-March 2005 and July-Sept 2005 (HIPE ICD10 I61 I63 I64)

7. INASC Emergency and acute hospital care Only one Irish hospital had a stroke unit Thrombolysis almost non-existent - 1% Swallow screening - available 5 sites 16% of hospitals had TIA clinics

8. INASC Staffing and acute hospital care One third of hospitals had lead consultant for stroke care (only 5 protected time) 5 clinical nurse specialists 2 clinical specialist therapists Availability of MDT limited Clinical psychology almost non-existent

9. INASC Acute hospital care Access to rehabilitation 35% of hospitals had access to on-site rehabilitation Limited access to rehabilitation for younger stroke patients Stroke specific MDT meetings in only 22% hospitals 22% had documented rehabilitation goals (76% UK06)

10. INASC Who gets stroke? - Men 52% Women 47% -19% < 65 years (17%) -92% living at home at the time of the stroke -73% independent in activities of daily living (ADL) pre-stroke -On discharge… 56% discharged home 15% newly institutionalised (13%) Only 28% independent in ADL at discharge(39%) UK 06

11. INASC Co-morbidity Profile

12. INASC Acute hospital - diagnostics 71% admitted on day of stroke, 5% within 2 hours of stroke (UK 39%) 30% did not have routine access to CT within 48hr of stroke and only 41% emergency MR scanning Time from stroke to scan mean 2.6 days, median* 1 (1 day* UK06) INASC 4% scanned within 3 hours (9% UK06)

13. INASC Standards within 72 hours SLT swallow screen 26% (66%) SLT swallow assessment 25% (67%) Physiotherapy assessment 43% (71%) Nutrition assessment 81% (93%) Aspirin within 48 hours 43% (67%) UK 06

14. INASC Standards within 7 days SLT communication assessment 29% (69%) OT assessment 22% (68%) Continence plan 13% (54%) UK 06

15. INASC INASC - Onset/Hospital Stay INASC 2006 % (N) Sentinel 2006Sentinel 1998 Died in hospital Unknown 19% (408) 4% 26% 1% NA 30-day mortality Unknown 15% (317) 13% 22% 5% 29% Length of staymean 29.8 days median 14 Mean 27.7 days median 15

16. INASC Communication patients and carers Discussion stroke diagnosis 22% (69%) Discussion stroke prognosis 18% (59%) Assessment of carers needs 24% (68%) Skills taught to carers 12% (71%) 7% Irish patients had a home visit (63%) Only 4 hospitals had a hospital/community liaison person UK 06

17. INASC Medications

18. Acute hospital care - secondary prevention 51% cause stroke identified/documented (73%) Smoking cessation 9% (79%) Reduce alcohol 7% (80%) Exercise 8% (41%) Diet advice 14% (42%) 67% Blood cholesterol documented (NA) UK 06

19. INASC Discharge from hospital & follow-up GP informed of patients discharge 56% of GPs notified on day of discharge 24% of discharge summaries indicated functional status 35% had carotid imaging within 3 months

20. INASC Ireland 2006 UK 2002UK 2004UK 2006 Stroke unit* 3%73%79%91% Rapid transfer to hospital 3%NA4%12% Routine Thrombolysis 0%NA 18% Neurovascular clinic 16%NA65%78% Mobile stroke team* 14%NA23%29% Early support discharge team* 0%NA14%22% Specialist community rehab team (CRT)* 0%NA25%32% Consultant with responsibility for stroke* 32%80%90%98% Audits and improvement - INASC vs. Sentinel Rounds UK

21. INASC

22. INASC Main findings: community stroke management Dr Anne Hickey

23. INASC Community Surveys: Methods National GP survey: Randomly selected (n=204: 46% response), postal survey Allied health professional (AHP) & public health nurse (PHN) survey (3 phases): N=75 interviews/postal survey involving Local Health Office managers, AHP/PHN managers and frontline staff across 8 disciplines Patient & carer survey: Interviews with 139 (55% response) patients and 72 carers Nursing home survey: Interviews with proprietor/manager in 60 nursing homes (20 Dublin, 40 outside Dublin) and residents with stroke

24. INASC GP Survey - Stroke Management Information letter at discharge focused almost entirely on diagnosis; little information on functional ability, rehabilitation or community services organised Staff shortages most significant barrier to rehabilitation - lack of OT, SLT, physiotherapy and home help GP stroke patients residing in nursing homes - c. 25%

25. INASC AHP/PHN Survey - Stroke Management/Service Provision PLANNING: No stroke statistics/registers - Absence of information on prevalence of stroke in community makes planning for comprehensive community-based stroke service very difficult DISCHARGE: Communication at discharge absent, delayed or limited Equipment / support often not in place at discharge TEAMWORK: Separate notes; few team meetings Multidisciplinary service, not operating as multidisciplinary team Access to dietetics, social work & psychology largely non-existent LIMITS: Services age-related (younger have limited access) Limited input to nursing homes

26. INASC AHP/PHN Survey - Conclusions Inequitable access to rehabilitation - no programmes in some areas Community AHP staffing levels do not reflect availability for stroke-related service provision Need for key worker to ensure streamlined services Current staffing levels and employment ceilings restrict service development - complete absence of some disciplines in some areas (notably social work, speech & language therapy, dietetics, psychology)

27. INASC Patient/carer perspectives on hospital discharge Inconsistent, haphazard discharge planning: 75% no family conference prior to discharge 67% no contact name after discharge 33% necessary services not in place on discharge 34% no information on purpose of medication, 70% not informed of potential medication side- effects

28. INASC Patient/carer perspectives on community stroke care Poor community rehabilitation 50%+ not getting sufficient mobility treatment Approx. 50% not getting sufficient SLT treatment 75% no support with emotional difficulties Less likely to receive services if under 65 years

29. INASC Stroke carers Need for information and support about diagnosis, prognosis and post-hospital care Carer expected to become expert once patient came home Need for key worker to provide contact if needed One in 10 carers classified as at risk of health problems; all women, predominantly over 65

30. INASC Nursing Home Residents and Stroke N= 570 residents with stroke: 83% > 75yrs; 2% < 65yrs Percentage of nursing home residents with stroke <65 yrs65-74 yrs75+ yrs Affected by stroke 8%23%18%

31. INASC Stroke Resident Impairments Overall (% of the total number) N=570 Communication Difficulty51 Swallow difficulty52 Cognitive impairment64 Positioning needs85 Limited independence86 Risk of falls87 Decreased independence in transfers (bed to chair and back) 88 Decreased balance86 Poor mobility / Mobility needs83 Residual weakness after stroke92

32. INASC Nursing Homes: Access to Services Access to GP very good Access to rehabilitation professionals-POOR Stroke patients described as discharged from active rehabilitation services - some access to physiotherapy - very limited access to SLT, OT, dietician, social work; no access to psychology Many challenges appear similar to those of nursing home residents generally

33. INASC Preventing and Managing Stroke in the Community Little or no organised system of care for the management of stroke in the community Little systematic or organised primary prevention of stroke Lack of awareness evident in other Irish research Major awareness and education campaign needed (rapid response essential): Public and those working with public Primary care professionals Hospital and rehabilitation professionals

34. INASC Primary prevention of stroke Barriers to implementation of stroke primary prevention strategies in primary care: Inadequate staffing Time pressures Lack of designated funding Lack of screening protocols Lack of risk factor management protocols

35. INASC Potential for Stroke Prevention and Screening in General Practice Heartwatch (heart disease management) GP practices much more likely to have: Registers of patients with hypertension Registers of patients with diabetes Registers of patients with atrial fibrillation Registers of patients with stroke Regular practice audits Potential to expand to Cardiovascular Watch, to include key stroke-related variables (e.g., screening for atrial fibrillation)

36. INASC Implications of findings for stroke services in Ireland Professor Desmond ONeill

37. INASC After I got home, there should have been someone to help from the start. (Patient) No one seemed to know who was looking after him; there was no follow-up, and very little support was available. (Carer) A contact person would have been nice, someone to talk to. (Patient) I was only 52 and had my own business. I miss the contact with work colleagues and can go for weeks without seeing anyone. (Patient)

38. INASC INASC Summary Allows quality of care comparisons against professional guidelines and neighbouring jurisdiction (UK National Sentinel Audit) Provides comprehensive profile of stroke care across primary and secondary prevention, acute treatment, rehabilitation and longer-term care Enables evidence-based planning and evaluation of strategies to improve service delivery

39. INASC INASC Implications National strategy for stroke Regional governance, implementation of stroke care Stroke register Primary prevention - supportive structures Reconfiguration hospital services Urgent development STROKE UNITS with appropriate services and staff Rehabilitation at all stages of care

40. INASC Implications… Systems for sharing information and follow-up Ongoing support and community rehab Information on stroke patients and carers Major developments staffing and specialist training for all disciplines Equitable needs based access to care Public awareness programmes Transportation Repeat audit cycle

41. INASC

42. Acknowledgments Hospital staff; physicians, management team, HIPE staff, Medical Records. Chart auditors ESRI Health Policy Unit National Hospitals Office Sentinel team UK - Dr Tony Rudd and Mrs Alex Hoffman Stroke patients and their carers Nursing home staff Community PHNs AHPs, AHP Managers and Frontline staff, LHOMs General Practitioners Professional organisational submissions Ms Imelda Noone and Ms Aisling Creed

43. INASC INASC Project Steering Group Professor Hannah McGee - Psychology RCSI (Co-PI) Professor Des ONeill - Gerontology TCD (Co-PI) Dr Frances Horgan - Physiotherapy RCSI (Project Manager/Lead Hospital audit) Dr Anne Hickey - Psychology RCSI (Lead Community Projects) Professor Seamus Cowman - Nursing RCSI Professor David Whitford - General Practice RCSI Dr Emer Shelley - Epidemiology RCSI Dr Sean Murphy - Midland Regional Hospital Mullingar Professor Miriam Wiley - Economic & Social Research Institute INASC Project Research Staff Research Staff at the Division of Population Health Sciences (Psychology), RCSI: Ms Karen Galligan, Ms Helen Corrigan, Ms Maeve Royston, Ms Maeve Proctor, Ms Oonagh Mullan, Ms Abigail Henderick, Ms Anna-May Fitzgerald, Ms Philippa Coughlan, Dr Bernadette OSullivan, Ms Claire Donnellan and Dr Maja Barker