Evaluation of Community Rehabilitation Service Delivery in Long-Term Neurological Conditions Diana Jackson Senior Research Fellow

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1 Evaluation of Community Rehabilitation Service Delivery in Long-Term Neurological Conditions Diana Jackson Senior Research Fellow Department of Palliative Care, Policy & Rehabilitation King s College London diana.m.jackson@kcl.ac.uk

2 Overview: Multiple challenges Complexity Tracking patients as they transition across settings Expectation that HCPs, patients and carers would provide data Needed appropriate measures of service needs and gets Need to understand configuration of CRTs?

3 Background: NSF for LTNCs: NSF for LTNCs (2005) Gladman report (2007) Promotes integrated community-based services Person-centred model of service delivery Standards for rehabilitation Quality requirements Community services for LTNCs fragmented or missing Gaps in services for people with: Cognitive problems Challenging behaviours

4 Background: Future rehab needs Demand for specialist rehabilitation will increase Critical to track patients longitudinally Population growth People living longer Greatest rise in numbers of people in their 70s Increased survival post stroke and ABI Identify and register patients with complex needs Monitor changing needs and services received

5 Background: NSF Care Pathway Sudden onset conditions: e.g. brain injury, SCI QR3: Timely emergency & acute management QR 7: Equipment & accommodation QR4: Early & specialist rehabilitation On-going access to specialist care QR2: Early recognition prompt diagnosis & treatment QR5: Community rehabilitation QR6: vocational rehabilitation QR 1: Person-centred, integrated assessment + care planning QR8: Personal care and support QR10: Support families and carers QR 11: Joined-up service provision - all agencies QR9: Palliative care Progressive conditions: e.g. MS, MND, PD Intermittent Conditions: e.g. epilepsy Turner-Stokes, L and Whitworth, D. Clinical Medicine 2005: 5(3):203-6, 2005

6 Study aims: Find out whether patients want to be registered Pilot use of a prototype register Develop measure of met and unmet needs Follow cohort of patients with complex needs Describe needs for community rehabilitation/support Identify met and unmet needs Which variables predict rehabilitation received? Health economic analysis costing models of community rehabilitation / support services

7 Setting: Greater London LSNRC Specialised Neuro-Rehabilitation Consortium In-patient services (N=9) London PCTs (N=31) Serves >7million Model for coordinated network-based commissioning Community services Rehabilitation teams Social services Voluntary sector

8 Study methods: Overview Rapid literature review Evidence on best models of integrated service provision Pilot and test feasibility of LTNC register Develop and test tools to support data collection Evaluate Needs and Provision Complexity Scale Longitudinal cohort study All patients D/C from LSNRC Units over 1 year Followed up at 6/12 and 12/12 post D/C Survey community rehabilitation services Health economic evaluation

9 LTNC Register: Simple information Do they have a LTNC with complex needs? Do they need integrated care planning? Are they having integrated planning reviews? Do they have a named single point of contact? Can they access services when they need them? Patient level dataset Developed to monitor NSF implementation Systmatic data collection Electronic patient record Supports tracking patients through services

10 LTNC relational dataset: Sudden onset Acute care Neurosurgery Dataset Early Specialist rehab Rehab Dataset Community /vocational rehab Rehab Dataset GP referral Progressive + intermittent Neurology Dataset LTNC Register Meet criteria for ICP: LTNC Complex needs Need ICP Integrated care planning Reviews ICP Dataset Datasets linked by patient s NHS number Gathered in Secondary Users Service Accessible by healthcare planners, commissioners Palliative care Palliative Care Dataset Social services Social Services Dataset

11 Tools to support data collection: Outcome measures Neurological Impairment Scale (NIS) Northwick Park Dependency Scale (NPDS) & Care Needs Assessment (CNA) Needs & Provision Complexity Scale (NPCS) Community Integration Questionnaire (CIQ) Aspects measured Major neurological impairments Activities needed for daily functioning Nursing care needs and time taken Complexity of needs for health and social care and their provision Home integration, social integration, productive activities Zarit Burden Interview (ZBI) Impact of caring on carers well-being Checklist of major neurological impairments Services Obstacle Scale (SOS) Patients and carers perceptions of brain injury services in the community Client Service Receipt Inventory (CSRI) Retrospective data on service costs

12 Needs and Provision Complexity Scale: NPCS 15-item scale NPCS-Needs completed by clinician NPCS-Gets completed by patient/carer Subscales Healthcare Personal care Rehabilitation Social/family support Environmental support HEALTH & PERSONAL CARE NEEDS HEALTHCARE Medical Needs Skilled or specialist nursing SOCIAL CARE AND SUPPORT NEEDS NEEDS GETS NEEDS GETS (Part A) (Part B) (Part A) (Part B) Scores Scores Scores Scores SOCIAL AND FAMILY SUPPORT Social work and case management 0 GP occasional 0 0 None 0 1 GP active monitoring 1 1 Occasional /advice (x2-3/yr) 1 2 Low level specialist support 2 2 Regular (every 1-2 months) 2 3 Active specialist medical care 3 3 Frequent (every 1-2 weeks) 3 Family carer support needs 0 None 0 0 None 0 1 Occasional - less than monthly 1 1 Carer Assessment 1 2 Regular - every 1-2 weeks 2 2 Time limited support 2 3 Frequent (several x/week) 3 3 Ongoing support 3 PERSONAL CARE Care in and around the home Respite care No. of 0 No carers 0 Residential 0 None 0 Carers 1 One carer 1 1 Occasional residential 1 2 Two or more carers 2 2 Regular planned respite 2 Care 0 No help 0 Frequency 1 Occasional help less than daily 1 3 Frequent planned/crisis support 3 2 Once daily - (1-2 hours) 2 Day Care 0 None times a day (3-6 hours total) 3 1 Occasional days/week 1 4 Live-in / all day care 4 2 Frequent days/week 2 5 Constant supervision / night care 5 Personal assistant / enabler for community activities Advocacy needs 0 None 0 0 None 0 1 Occasional days per wk 1 1 Mental capacity assessment 1 2 Regular days per wk 2 2 Independent advocacy 2 3 Daily days per wk 3 REHABILITATION ENVIRONMENT Therapy needs EQUIPMENT Therapy 0 None 0 0 None 0 Disciplines 1 Single discipline only 1 1 Basic equipment 1 2 Individual disciplines not coordinated 2 2 Specialist equipment 2 3 Co-ordinated interdisciplinary 3 3 Highly specialist equipment 3 Therapy 0 None 0 Intensity 1 Occ. review / group therapy solely 1 ACCOMMODATION 2 Regular (every 1-2 weeks) 2 Adapted 0 No special accommodation 0 3 Frequent (several x/week) 3 Housing 1 Restricted options 1 2 Partially adapted 2 Vocational / educational support / rehabilitation needs 3 Fully adapted 3 0 None 0 1 Vocational Assessment 1 Sheltered / 4 Sheltered accomodation 4 2 Ongoing vocational support 2 Residential 5 Small group home 5 3 Formal vocational rehabilitation 3 Care 6 Residential care home 6 7 Nursing home 7 8 Specialist nursing home 8 9 Hospice care 9 SUMMARY HEALTH AND PERSONAL CARE NEEDS SUMMARY SOCIAL CARE AND SUPPORT NEEDS Heathcare (0-6) Social / family support (0-13) Personal care (0-10) 3 2 Equipment (0-3) 1 6 Rehabilitation (0-9) 2 3 Environment (0-9) 2 15 TOTAL (0-25) 8 10 TOTAL (0-25) 4

13 Longitudinal study: Recruitment Assessed for eligibility (N=499) Non-Recruits (N=71) Recruits (N=428) Phase 1: 4/52 post D/C No response (N=136) *Excluded (N=36) Completed (N=256) Phase 2: 6/12 post D/C No response (N=202) *Excluded (N=14) Completed (N=212) NPCS Test-retest (Phase1, Phase 3) (N=53-60) Phase 3: 12/12 post D/C No response (N=234) *Excluded (N=4) *Excluded: Withdrawn (N=43) Deceased (N=11) Completed (N=190) Responded at all three Phases N=134 Completed >1 questionnaire N=306

14 Results: Registered patients (N=428) Count by Postcode District Discharge destination N (%) Home 338 (79%) Nursing home 52 (12%) On-going rehab 15 (4%) Hospital 4 (1%) Other setting 19 (4%) TOTAL 428 (100%)

15 Results: Demographics (N=428) Variables N % Gender: Males 270 (63%) Females 158 (37%) Age group: (20%) (65%) (15%) Diagnosis: Stroke (SAH) 212 (50%) TBI 63 (15%) Other ABI 40 (9%) Spinal Cord Injury 38 (9%) Neuropathy (eg GBS) 26 (6%) Progressive (eg MS) 21 (5%) Other 27 (6%)

16 Results: Needs for on-going input (N=428) Specialist medical monitoring 61% Assistance with personal care 67% Help from personal enabler 67% On-going MD community rehabilitation 94% Vocational rehabilitation 44% Input from social worker or case manager 79% Carers assessment or on-going carer support 49% Equipment 72% Accommodation 61%

17 Results: Referrals at discharge (N=470)* * Referred to one service (N=324), two services (N=61), three services (N=8), missing (N=35) In-patient rehab (N=25) Community rehab teams (N=306) Out-patient services (N=48) Vocational rehab (N=31) Other services (N=60) 76 (78%) (90%) 46 (72%) 52 (64%) (89%) (64%) (5%) 0 (0%) 10 (10%) 7 (11%) 5 (6%) 1 (2%) 3 (11%) 2 (13%) 12 (44%) 8 (53%) 0 King s (N=58) Homerton (N=37) Wolfson (N=98) Queen s Square (N=64) Northwick Park (N=81) Blackheath (N=42) Edgeware (N=27) Maudsley (N=15)

18 Results: Met/unmet service needs 6/12 0% 20% 40% 60% 80% 100% Medical Care 18% 51% 30% Nursing Care 64% 14% 22% No of Carers Care Frequency 36% 34% 51% 45% 13% 20% Personal enabler 33% 20% 47% Therapy Disciplines Therapy Intensity Vocational Rehabilitation Social worker Family carer support Residential Respite Day Care Advocacy Equipment Accommodation 6% 39% 7% 44% 60% 5% 24% 20% 49% 15% 82% 71% 76% 28% 32% 38% 39% 54% 49% 35% 56% 36% 2% 15% 3% 26% 11% 13% 40% 22% (N=212) No needs % Needs met % Needs unmet %

19 Results: Met/unmet service needs 12/12 0% 20% 40% 60% 80% 100% Medical Care 18% 54% 28% Nursing Care 63% 14% 23% No of Carers Care Frequency 38% 34% 47% 43% 14% 23% Personal enabler 34% 13% 52% Therapy Disciplines Therapy Intensity Vocational Rehabilitation 8% 8% 28% 33% 56% Social worker Family carer support 25% 14% 49% Residential Respite Day Care Advocacy 84% 74% 81% Equipment Accommodation 25% 39% 28% 9% 13% 39% 64% 58% 34% 60% 37% 2% 14% 3% 23% 9% 9% 45% 21% (N=190) No needs % Needs met % Needs unmet %

20 Results: Change over time Pts completing P1,2,3 (N=134) No significant change over time in either dependency or community integration 70 Change in NPDS scores over time (N=134) 30 Change in CIQ scores over time (N=134) Phase 1 Phase 2 Phase 3 0 Phase 1 Phase 2 Phase 3

21 Community Integration Questionnaire Score Northwick Park Dependency Score Results: Dependency & Integration Pts completing P1,2,3 (N=134) 50 P3 NPDS scores by whether needs were met (n=134) At 12/12 patients whose rehab & social needs were met were more dependent than those whose needs were not met Rehab/social needs not met Rehab/social needs met Patients whose rehab & social needs were met were less well integrated in the community than those whose needs were not met P3 CIQ scores by whether needs were met (N=134) Rehab/social needs not met Rehab/social needs met

22 Results: Predictors of rehabilitation Under-provision of rehabilitation and social support... 70% had unmet needs. No evidence that people with cognitive behavioural problems received less rehabilitation. Whether disability is physical or cognitive, more disabled patients get more health/social services. Physical dependency, cognitive-behavioural dependency and provision of rehabilitation and social support negatively predicted community integration, accounting for 41% of variance

23 Results: Survey of community services

24 Results: Community services (N=102) Community Rehab Team (Generic) N=32 Community Rehab Team (Intermediate) N=7 Community Rehab Team (Neuro) Community Rehab Team (ABI) Community Rehab Team (Stroke) Community Mental Health Drug and Alcohol Service N=4 N=5 N=4 N=3 N=13 Services accessed by patients completing at least one questionnaire (N=306) Out-patient Therapy (Single Discipline) Community Therapy (Single Discipline) Vocational Rehabilitation Social Services N=7 N=2 N=1 N=4 Team-based rehabilitation most prevalent model Supported Living Unit Voluntary Sector Day Centre In-patient Rehabilitation N=1 N=8 N=6 Only one centre for vocational rehabilitation Specialist Nursing Home N=5

25 Results: Community services (N=36) Nature and scope of services available to patients in study unclear. Community Rehab Team (Generic) Community Rehab Team (Neuro) Community Rehab Team (Intermediate) N=2 N=10 N=11 Services invited to complete Community Service Profile questionnaire. Community Rehab Team (ABI) Community Rehab Team (Stroke) Voluntary Sector Day/Support Service Poor response (35%) despite re-sending and In-patient Rehabilitation telephone reminders. Specialist Nursing Home N=1 N=1 N=2 N=3 N=6

26 Results: Disciplines provided Provided Not provided Physiotherapy 22 3 Occupational Therapy 22 3 Speech and Language Therapy 17 8 CRTs (N=25) Psychology Social work Dietetics Orthotics Rehabilitation Assistants 6 19 Specialist nurses 5 20 Support workers 3 22 Case manager 2 23 Other teams (N=7) Physiotherapy Occupational Therapy Speech and Psychology Social work Day centre (N=4) Rehabilitation In-pt unit (N=2) Nursing home (N=1) Nursing

27 Results: Outcome measurement CRTs (N=16) Other (N=2) GAS FIM+FAM N= 7 (33%) N=11 (52%) Additional outcome measures Care and Needs Scale (CANS) ED-5QL Quality of life measure Therapy Outcome Measure (TOMS) Canadian Occupational Performance Measure (COPM) Barthel Index FIM N=3 (14%) N=6 (29%) Tinneti Gait and Balance Tool Berg Balance Scale Brain Injury Community Rehabilitation Outcome Scale (BICRO) Other N=10 (48%) Beck Depression Inventory Beck Anxiety Inventory Patient Satisfaction Questionnaire

28 Results: Specialist programmes Provision of specialist programmes as part of routine practice (N=18) Self-management Community groups Group therapy Neuro-psychological rehab Spasticity management Back-to-work N=12 N=12 N=11 N=10 N=9 N=8 Family support N=7 Electro-assistive technology N=6 Weight management N=2

29 Results: Long-term follow-up Policy for long-term follow-up (N=17) Self-referral or open access (N=8) Referral via GPs or therapists (N=2) Follow-up at set times - 3/12 to 12/12 post D/C (N=6) Flexible approach - follow-up according to need Patients at risk of deterioration e.g. Progressive, palliative Where clear goals agreed Prompts to follow-up via phone or electronic pt. record

30 Results: Coping with patients needs Services can t cope adequately with needs (N=19) Constraints in quality services (N=10) High patient load Shortage of therapists wait list time frequency/duration of input Poor range of disciplines to deliver specialist input for complex patients (N=7) vocational rehab, dietetics, advocacy, hydrotherapy, gym/leisure facilities, equipment, family support Lack of clear pathway hospital - community services could compromise early supported D/C.

31 Results: Changes and threats Envisaged changes/threats to services (N=16) Voyage into the unknown Funding cuts - healthcare... rehabilitation... social services, Potential time limitations for patient contact Services to take on new responsibilities without resources Gaps in community stroke care pathway... patchy rehab Structural reorganisation... dilution or division of services

32 Conclusions: Register Role of clinicians strong leadership essential overall recruitment by services 81% - variability across centres Patients 96% willing to be registered 31% completed questionnaires at 3 time points 40% responded at 1 or 2 time points Tools identified for register... Impairment (NIS), disability (NPDS), social participation (CIQ), service needs and provision (NPCS) Annual Integrated Care Planning reviews... optimal forum for collecting dataset information

33 Conclusions: Community services 79% patients D/C home from LSNRC units Almost all referred to CRTs Generic CRTs most prevalent... centre-based rehab Shortage of specialist CRTs... ABI and stroke Vocational Rehabilitation... one centre 35% CRTs provided data on service configuration Most with MDT focus... core therapies PT, OT, SLT well represented 50% offered psychology 72% considered service to be complex specialised Shortages... social workers, case managers? Impact on community re-integration

34 Conclusions: Rehabilitation At 6/12 and 12/12 - provision of support for personal care > level of predicted need... suggests Deterioration of independence post D/C Failure to meet needs for rehab and social support Expected dependency & community integration would be better if needs for rehab and support well-met Paradoxically showed the opposite...(garraway effect) When resources are limited, therapy teams focus efforts on patients with greatest needs for support, but for whom integration is more challenging

35 Limitations: Representation and generalisability Geography predominantly Greater London Attrition 50% of original sample completed at 6/12 Differences between Units Questionnaire completion Responses dependent on patient/carer recall Needs Subjective opinion of clinical teams Could have changed over time Low response to community services questionnaire

36 Acknowledgements This presentation presents independent research commissioned by the National Institute for Health Research (NIHR) under its Health Research Health Services and Delivery Research (NIHR HS&DR) programme (project number 08/1809/235). - Please visit the HS&DR website for more information The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Applicants Richard J. Siegert Paul Bassett Lynne Turner-Stokes Paul McCrone Diane Playford Diana Jackson Simon Fleminger Participating patients and carers Clinical teams in the nine LSNRC centres for recruiting patients Community rehabilitation services who completed the survey