Evaluation of Community Rehabilitation Service Delivery in Long -Term Neurological Conditions

1. Evaluation of Community Rehabilitation Service Delivery in Long-TermNeurological Conditions Prof Lynne Turner-Stokes RRU, Northwick Park Hospital Department of Palliative Care, Policy and Rehabilitation King’s College London The North West London Hospitals NHS Trust

2. Project group • Funded by NIHR – SDO programme • Now HS&DR • (Health Services and delivery Research Programme) • Based at King’s College London • Investigators • Richard Siegert • Paul McCrone • Diana Jackson • Paul Bassett • Diane Playford • Simon Fleminger • Lynne Turner-Stokes1

3. NSF for Long-term Conditions Care Pathway and the 11 Quality Requirements Sudden onset Conditions, e.g. brain injury, SCI QR3: Timely Emergency and Acute management QR7: Equipment and accommodation QR4: Early and specialist rehabilitation QR5 + 6: Community and vocational rehabilitation QR9: Palliative care QR 1: Person-centred, integrated information + care planning. On-going access to specialist care QR8: Personal care and support. QR 10: Support for families and carers QR2: Early recognition Prompt diagnosis + treatment Joined-up service provision - all agencies - QR11 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

4. Cross section – Do-nut Secondary care Respite Primary care Day centre Community team Social services Voluntary sector Individual / Family Benefits Employment Integrated planning Housing Vocational Training Information Education

5. LTNC dataset • Remaining central legacy of NSF • Patient level dataset • Evaluate NSF implementation • Through its various stages • Systematic data collection – electronic patient record • Questions • Can patients with LTNC • Access the services they need? • When they need them? • Are they having integrated care planning reviews? • Do they have a named single point of contact?

6. LTNC Dataset Scheme for relational dataset Sudden onset Acute care Community / vocational rehab Early Specialist rehab Neurosurgery Dataset Rehab Dataset Rehab Dataset Palliative care Integrated care planning Reviews Pall Care Dataset GP referral ICP Dataset Social services Progressive + intermittent Social Services Dataset Neurology Dataset Datasets linked by patient’s NHS number Gathered in ‘SUS’ (Secondary Users Service) Accessible by healthcare planners, commissioners

7. LTNC Dataset Scheme for relational dataset Sudden onset Acute care Community / vocational rehab Early Specialist rehab Neurosurgery Dataset Rehab Dataset Rehab Dataset Palliative care ?? Integrated care planning Reviews Pall Care Dataset GP referral Who needs ICP? Social services ICP Dataset Progressive + intermittent Social Services Dataset Neurology Dataset

8. Challenges for LTNC • How to identify people with LTNC: • Diagnosis – ICD-10 codes • Poor indicator of needs • Some patients do not have a diagnosis • Many people are not currently in the system • Many thousands of patients • Insufficient resources to provide ICP for all • Register • People with LTNC • More complex needs • Who need (and want) ICP

9. LTNC Dataset Scheme for relational dataset Sudden onset Acute care Community / vocational rehab Early Specialist rehab Neurosurgery Dataset Rehab Dataset Rehab Dataset Palliative care Integrated care planning Reviews LTNC Register Pall Care Dataset GP referral • Meet criteria for ICP: • LTNC • Complex needs • need ICP Social services ICP Dataset Progressive + intermittent Social Services Dataset Neurology Dataset The register does not define the level of complexity that triggers integrated care planning reviews - this is set locally

10. Registration – simple information • Do they have an LTNC? • Do they have complex needs • Arising from the LTNC • Do they need integrated care planning? • Have they had an ICP review? • Is there a named person • Acting as a single point of contact

11. ‘Complex needs’ • Needs & Provision Complexity Scale (NPCS) • Simple scale – Range 0-50 • 2 main sub-scales • Health care needs • Medical / nursing • Care / personal enablement • Therapy – vocational rehabilitation • Social care needs • Social support • Environment – equipment and accommodation • Measure ‘Needs’ and ‘Gets’ • Measure of unmet need

12. Register: More detailed information • Confirmation of LTNC • Neurological condition • Likely to have ongoing needs • Severity • Of impairment – Neurological Impairment scale • Of needs – NPCS-Needs • Met and unmet needs • ‘NPCS-needs’ vs ‘NPCS-gets’ • Cost implications of meeting unmet needs • ICP – date of last review • Single point of contact

13. Aims of this study • To pilot the use of a prototype LTNC register • Develop and validate the tools • Do people want to be registered? • To validate the NPCS • As a measure of met and unmet needs • Cohort of patients with complex needs • What are their needs for community rehab / support? • How well are these needs met? • What do services currently cost? • What would it cost to meet the unmet needs?

14. Analytical questions • What predicts rehab needs? • What predicts the costs? • Is there a relationship between • ‘Metness of needs’ and outcomes • Disability • Community integration

15. Methods • Five main components to study • Piloting and feasibility of LTNC register • Development of manageable dataset • with questionnaires / tools for data collection • Evaluation of the NPCS • As a simple tool for evaluating met and unmet need • Longitudinal cohort study • Follow-up of patients for 12 months • After discharge from Level 1 rehab services in London • To identify met and unmet needs • Health economic evaluation

16. Piloting the LTNC register • Group of patient with complex needs • In a defined area • to examine provision and access to services • London area • Patients discharged from Level 1 in-pt rehab services • NSF recommended ongoing community rehab • Do they get it? • LTNC register • Is it feasible – do patients want it? • “The proof of the pudding is in the eating” • How many agree to follow-up • How many actually respond to requests for information?

17. Recruitment flow-chart Of 576 total admissions: N=499 Approached for inclusion Declined n=71 (14%) Recruits n=428 4 weeks post discharge (Baseline in community) n=256 (59%) 6 months post discharge n=212 (49%) N=306 (71%) patients completed at least one follow-up questionnaire N=134 (31%) patients Responded at all three phases 12 months post discharge n=190 (44%)

18. Efforts to maximise response

19. Geographic distribution of patients

20. Range of community services (n=102) accessedby patients completing at least one follow-up questionnaire (n=306)

21. Distribution of Services and patients

22. Demographics

23. Discharge destination

24. Neurological Impairment Set • Physical (0-26) • Motor • RUL • LUL • RLL • LLL • Trunk • Tone / contractures • Sensation • Pain • Fatigue • Cognitive (0-21) • Perception • Speech and language • Cognitive • Behavioural • Mood • Vision • Hearing • Other (0-3)

25. Impairment: Respondents vs non-respondents

26. NPCS • NPCS - 2 main sub-scales • Health care needs • Medical / nursing • Care • personal enablement • Therapy • vocational rehabilitation • Social care needs • Social support • Environment • equipment • accommodation • Measure ‘Needs’ and ‘Gets’ • Measure of unmet need

27. Does the NPCS provide represent a feasible and practical tool to monitor patients with complex needs?Can we use it to identify met and unmet needs?

28. The NPCS • Does the NPCS represent • a feasible and practical tool • to monitor patients with complex needs? • Is it robust and reliable? • Does it identify met and unmet needs? • Can it help to quantify the cost • Of meeting unmet needs?

29. NPCS factor structure – NPCS-Needs (n=428)

30. Concurrent validity of the NPCS • Relationship with other measures • Eg Disability and community integration • Spearman correlations show expected relationships with NPCS-Gets at 6 months

31. NPCS repeatability – self-complete version • NPCS-Gets • N=60 patients completed twice • 7 days apart • Item by item agreement • Linear- weighted kappas range from 0.42-0.83

32. NPCS: psychometric properties • Evidence for • Scaling properties in two domains • Health care • Social care • Validity • Concurrent relationship with dependency/disability • Reliable • For self-report • As well as professional application • Reasonable robust measure of ‘needs’ and ‘gets’

33. Needs for servicesRespondents vs non-respondents

34. Domain scores: Needs and Gets Health / personal care Social care / support Wilcoxon z -4.8, p<0.001; Effect size 0.23 Wilcoxon z -5.6, p<0.001; Effect size 0.29

35. Met and unmet needs

37. Possible explanations • For above-predicted provision of personal care • Deterioration of independence outside hospital • Over-protective family • Clinicians fail to realise the extent of needs for care • In the home environment • Unlikely as many are on graded discharge programmes • More likely: • Failure to provide the required levels of ongoing support • Rehabilitation, social services and equipment • Leads to increased dependency • Burden of carelargely met by families • 80% in this series

38. Costing algorithm

39. NPCS costings

40. Computed costs

41. Translation to costs • Potential sums commissioners ‘save’ • By not investing in ongoing rehabilitation/support • Exceeded by addition costs • of personal and institutional care • To the tune of £10,000 per patient per year • Cost largely borne by patients and their families

42. What influences the rehabilitation that patients receive? • Demographic variables • Age / sex / diagnosis / education • No influence on rehabilitation services received • Best single predictor • NPDS – basic care needs scale (33% of variance) • Ie physically dependent patients receive most rehab • Cognitive-behavioural needs • NPDS-CB (3 items) account for 22% of variance • (Better predictor that the NIS cognitive) • In this sample, • No evidence that patients with cognitive/behavioural needs • fared worse than those with mainly physical disability

43. Metness of needs and outcome • Do patients who rehab needs are met • Do better than those whose needs are not met? • ‘Metness of need’ – discrepancy • between NPCS Needs and Gets at 6 months • ? Correlated with outcome scores • Dependency (NPDS) • Carer burden (ZBI) • Community integration questionnaire (CIQ)

44. Spearman rho paradoxical relationship

45. Spearman rho Subscale analysis The relationship lies in the Rehabilitation elements of the Healthcare Domain

46. Overall little change in outcome

47. Spearman rho – change scores

48. Confounds • Paradoxical relationship • Between ‘metness of need’ and community integration • Confounded by dependency • More dependent – less integration • Baseline dependency entered as covariates in linear regression for integration • Linear regression • After controlling for baseline level of dependency, • Those with met needs were less well integrated in the community • at 12 months post discharge (p=0.03) • Caution with cause and effect (Garraway effect) • When rehabilitation resources are limited • Tend to be focused on patients with greatest needs

49. Summary • The NPCS is a useful tool • Simple and easy to apply • Provides useful practical information • Needs and gets • Cost implications of meeting gaps in care needs • This population accessed some community rehab • But not at the level required, as identified at discharge • May explain why dependency and community integration did not change much in the year after discharge • Those patients whose needs were met • Did not achieve better outcomes than those with unmet needs • Possibly because the scant rehabilitation resources that were available • were focused on those with greatest needs

50. Strengths and limitations • Limitations • Low response rate • Lack of re-evaluation of NPCS-Needs • At 6 and 12 months • NPCS require further evaluation in different settings • Before findings could be considered generalisable • Strengths • The NPCS has the potential to inform • clinical decision-making • population-based service planning and delivery.