A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions

Abstract

Objectives: 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.

Design: A multicentre, prospective, cohort study surveying participants at 1, 6 and 12 months using postal/online questionnaires and telephone interview.

Setting: Consecutive discharges to the community from all nine tertiary, specialist, inpatient neurorehabilitation services in London over 18 months in 2010-2011.

Participants: Of 576 admissions 428 patients were recruited at discharge: 256 responded at 4 weeks, 212 at 6 months and 190 at 12 months.

Measures: 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.

Registration: The study was registered with the NIHR Comprehensive Local Research Network: ID number 7503.

Keywords: Rehabilitation Medicine.

Figure 1

A schematic diagram of the National Service Frameworks (NSF) for long-term neurological conditions (LTNC) care pathway and quality requirements (QRs). (A) The ‘fish diagram’ illustrates how the different QRs of the NSF fit along the care pathway. The cross-sectional diagram illustrates the range of services that may be needed by a patient with complex needs (reproduced with permission from Professor LT-S). (B) The overall scheme of the LTNC dataset. The LTNC dataset is made up of a relational database with seven datasets linked via the patient's identifier (National Health Service (NHS) number) following the overall schema of the LTNC pathway. The LTNC register identifies those patients with complex needs who form the denominator for datasets in the later stages of the pathway (reproduced with permission from Professor LT-S).

Figure 2

Recruitment and participation pathway.