title: A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions.
abstract: OBJECTIVE
  Part A: To pilot the use of a register to identify and monitor patients with complex needs arising from long-term neurological conditions. Part B: To determine the extent to which patients' needs for health and social services are met following discharge to the community after inpatient rehabilitation; to identify which factors predict unmet needs and to explore the relationship between service provision and outcomes at 12 months.
  
  
  METHODS
  A multicentre, prospective, cohort study surveying participants at 1, 6 and 12 months using postal/online questionnaires and telephone interview.
  
  
  METHODS
  Consecutive discharges to the community from all nine tertiary, specialist, inpatient neurorehabilitation services in London over 18 months in 2010-2011.
  
  
  METHODS
  Of 576 admissions 428 patients were recruited at discharge: 256 responded at 4 weeks, 212 at 6 months and 190 at 12 months.
  
  
  METHODS
  Neurological Impairment Scale, The Needs and Provision Complexity Scale, The Northwick Park Dependency Scale, Community Integration Questionnaire, Zarit Burden Inventory.
  
  
  RESULTS
  n=322 (75%) expressed willingness to be registered, but in practice less than half responded to questionnaires at 6 and 12 months (49% and 44%, respectively), despite extensive efforts to contact them, with no significant differences between responders and non-responders. Significant unmet needs were identified within the first year following discharge, particularly in rehabilitation, social work support and provision of specialist equipment. Dependency for basic care and motor and cognitive impairment predicted services received, together accounting for 40% of the variance. Contra to expectation, patients whose rehabilitation needs were met were more dependent and less well integrated at 12 months post discharge than those with unmet needs.
  
  
  CONCLUSIONS
  Registration is acceptable to most patients, but questionnaires/telephone interviews may not be the most efficient way to reach them. When community resources are limited, service provision tends to be focused on the most dependent patients.
  
  
  BACKGROUND
  The study was registered with the NIHR Comprehensive Local Research Network: ID number 7503.
authors.affiliation: School of Public Health and Psychosocial Studies and School of Rehabilitation and Occupational Studies, AUT University, Auckland, New Zealand.
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Siegert
authors.forename: Diana M
authors.initials: DM
authors.lastname: Jackson
authors.forename: E Diane
authors.initials: ED
authors.lastname: Playford
authors.forename: Simon
authors.initials: S
authors.lastname: Fleminger
authors.forename: Lynne
authors.initials: L
authors.lastname: Turner-Stokes
mesh_terms: D003153:Community Health Services / Q000458:organization & administration*; D004185:Disability Evaluation; D005260:Female; D006301:Health Services Needs and Demand; D006302:Health Services Research; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009422:Nervous System Diseases / Q000534:rehabilitation*; D010865:Pilot Projects; D011446:Prospective Studies; D012042:Registries; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: Rehabilitation Medicine