SCORE: Proces en uitkomsten van revalidatie na een beroerte

background: Stroke leads to substantial disability in the majority of patients and imposes a considerable financial burden to society. Rehabilitation is an effective management strategy, however there is variation between centres with respect to its structure and process. Treatment diversity and outcomes, patient perspectives and costs of rehabilitative treatment are understudied, as well as the predictors of long-term participation in society. Aims: 1. To describe: a) physical and cognitive functioning, quality of life and participation of stroke patients at short and long term; b) structure and process of in- and outpatient stroke rehabilitation; c) patient perspectives on illness and treatment; d) caregiver perspectives on caregiving and treatment; e) rehabilitation-related costs. 2) To explore differences between two rehabilitation centres in a) structure and process of treatment; b) patients’ satisfaction; c) physical functioning; and d) costs of treatment; 3) To determine which factors are associated with community participation of stroke survivors on the long term.

Study design: This project has a multicentre, observational, longitudinal design, and includes stroke patients in the Rijnlands Rehabilitation Center Leiden and Sophia Rehabilitation The Hague. The duration of the study is 4.5 years, with the inclusion period being 2 years. Study population: Patients admitted to inpatient or outpatient rehabilitation for a first ever stroke, time since stroke not longer than 6 months, age 18 years or older, and having provided written informed consent. We aim to include a minimum of 432 patients within the initial recruitment period. Main study parameters: Assessments will be done at baseline, discharge (if applicable) and at 3, 6, 12, 18, 24 and 30 months. The following outcomes will be assessed: 1) Functioning (Barthel Index, 2 SIS-scales); community participation (CIQ), quality of life (SAQOL-39g, EQ-5D), depression (HADS), fatigue (FSS), pain (VAS); 2) Structure (rehabilitation center’s protocols), and process (e.g. type, frequency, duration of treatment) of rehabilitation (rehabilitation center’s administrative database); 3) patients’ satisfaction with stroke care (SASC), illness perceptions (IPQ-R), longer term unmet needs (LUNS), self-management (TBD); 4) caregiver strain (CSI) and caregiver satisfaction (C-SASC); 5) Costs of rehabilitation (rehabilitation center’s administrative database), health care usage and absenteeism (self-developed questionnaires). At baseline, sociodemographic characteristics, stroke characteristics (NIHSS), comorbidities (based on POLS), and frailty (GFI) will be registered.

1. Differences in usual care between rehabilitation centers lead to differences in functioning, patient satisfaction and costs

2. Community participation depends on various person- and disease-related variables.

Baseline (upon entrance at rehabilitation as an in- or outpatient), discharge (if applicable), and 3, 6, 12, 18, 24, and 30 months after baseline.

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