The presented study is an explorative prospective study. First, it focusses on the longitudinal analysis of outcome quality in stroke treatment (12 months). Particularly, it addresses patient reported quality of life after inpatient stroke treatment and influencing factors. Second, it focusses on the feasibility and acceptance of a standard set of measures capturing outcome quality of medical care in stroke patients.
With a shift in focus to patient-centered health care and a constant effort to improve the quality of treatment, the role of the patient's perception of his/her medical care becomes essential. Patient reported outcome measures (PROMs) are among the most adequate instruments for assessing the patient's perspective on symptom load, functional status, and quality of life. After stroke, patients not only suffer from objectively scaled and measurable symptoms and impairments but also experience dramatic changes in everyday routine and quality of life. In this project, a standardized outcome measurement, including PROMs, for stroke patients is used. This stoke standard set was developed by the International Consortium for Health Outcomes Measurement (ICHOM; www.ICHOM.org); an international, interdisciplinary and inter-professional expert group with the contribution of patient representatives, aiming to create a comprehensive tool for measuring the most important outcomes and risk factors applicable to a broad variety of diseases. Main objective of this study is the analysis of quality of life 90 and 360 days after stroke and its association with stroke specific risk factors and complications, also measured within the scope of the ICHOM tool. Furthermore, the process and success of the implementation of the ICHOM stroke standard set within the stroke unit of the University Medical Centre Hamburg- Eppendorf (UKE) will be studied and evaluated.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
OTHER
Masking
NONE
Enrollment
975
Introduction and assessment of the ICHOM standard set consisting of demographic and medical data as well as questionnaires filled in by patients, shortly after admission to the stroke unit, at discharge, and at 90 and 360 days after stroke. Specifically the intervention includes an assembly of clinical records, in particular records of complications, recurrence of disease and mortality. Further patients will be required to complete a questionnaire assessing their situation in terms of housing and symptom burden as well as their self-perceived autonomy and quality of life. Telephone assessments will be administered to support patients if necessary and validate their responses.
Department of Neurology, University Medical Center Hamburg-Eppendorf (UKE)
Hamburg, Germany
Global patient reported health-related quality of life
PROMIS-10
Time frame: 90 days
Patient reported mental health status
PHQ-4 (depression, anxiety)
Time frame: 90 days
Recurrence of disease
patient-reported measures
Time frame: 90 days
Acute complications of treatment
clinical assessment of symptomatic intracranial hemorrhage
Time frame: at discharge from inpatient care, on average 6 days after admission
Use of healthcare services after stroke
Patient-reported measures about the patient's level of care and use of specific rehabilitation measures as part of the ICHOM stroke standard set, specifically two questions ranging from 0 to 5 and 0 to 4 with 0 denoting self-containment and no use of rehabilitation services respec-tively and 5 and 4 denoting high level care-dependency and admission in longterm care facilities respectively.
Time frame: 90 days
Quantitative process evaluation of the implementation of the ICHOM stroke standard set in routine care
Quantitative indicators on feasibility of the intervention (i.e. recruitente and respective response rate)
Time frame: after study completion (2 years)
Psychometric evaluation of the patient-reported outcome measures
Psychometric evaluation of the patient-reported outcome measueres of the ICHOM stroke standard set in the study population
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Time frame: after study completion (2 years)
Qualitative process evaluation of the implementation of the ICHOM stroke standard set in routine care
qualitative interviews with the staff and patients on acceptability, feasibility, barriers, and facilitators of the intervention
Time frame: after study completion (2 years)