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Journal ArticleDOI

A Longitudinal Cohort Study on Quality of Life in Stroke Patients and Their Partners: Restore4Stroke Cohort:

TL;DR: The identification of factors predicting quality of life can be used to improve rehabilitation care and develop new interventions for stroke patients and their partners, and to determine factors predicting quantity in several domains, especially personal and environmental factors.
Abstract: BackgroundStroke is a major cause of disability in the Western world. Its long-term consequences have a negative impact on the quality of life of both the patients and their partners.AimThe aim of ...

Summary (2 min read)

Introduction

  • In the Netherlands between 34 000 and 41 000 persons suffer a stroke each year (1), making stroke one of the most common causes of disability in adults (2).
  • As a result, more people have to cope with the consequences of stroke (7,8), experiencing long-term difficulties in terms of QoL (5,9), social reintegration (7), life satisfaction (10), and emotional functioning, including depression and anxiety (11).
  • Home care is mostly provided by the partners.
  • The authors present the study design of the Restore4Stroke Cohort study, which started in March 2011.

Patient population

  • A total of 500 patients are being recruited from stroke units in six participating hospitals in the Netherlands.
  • It is expected that 40% of the stroke patients will drop out during the two year follow-up period due to various reasons (recurrent stroke, comorbidity, refusal, death).
  • A total of 300 stroke patients will allow estimation of the prevalence of a certain consequence with satisfactory precision, for example a prevalence of 20% with a 95% confidence interval of 4·6% (alpha = 0·05; power = 0·80).
  • The authors expect to include approximately 300 partners.
  • The inclusion period for each hospital is one year.

Inclusion and exclusion criteria

  • Stroke patients are eligible for this study if they have a clinically confirmed diagnosis of stroke (ischaemic or intracerebral haemorrhagic lesion) and have suffered their stroke within the last seven days.
  • Furthermore, stroke patients are excluded if they were already suffering from cognitive decline as defined by a score of 1 or higher on the Heteroanamnesis List Cognition, before their stroke (27).
  • Post-stroke aphasia is not an exclusion criterion.
  • If this problem renders patients incapable of filling in questionnaires during the follow-up assessments, only the observational measures are conducted.

Procedure

  • All participants (stroke patients and partners) are informed of the nature of the study by a nurse practitioner or trial nurse.
  • After informed consent is given, a nurse practitioner or trial nurse conducts the first assessment (T1) during hospital stay in the first week post-stroke.
  • In order to spread the burden for the participants, the outcome questionnaires are sent in advance, after the appointment for T2 and T3 is made.
  • Previous research has found no differences between electronically processed questionnaires and questionnaires administered on paper (30).

Measures

  • The main outcome is QoL, which is considered both from a general health-related QoL and a domain-specific QoL perspective.
  • The general HRQoL perspective is operationalized as disease-specific HRQoL and generic HRQoL.
  • The domain-specific perspective consists of the domains of participation, emotional functioning, and subjective wellbeing.
  • An overview of all measurement instruments that are administered during the two year follow-up is shown in Table 1 (stroke patient) and Table 2 .

Outcome

  • Disease-specific HRQoL is measured with the short version of the Stroke-Specific Quality of Life Scale (31).
  • Psychometric properties of both the subscales and the total scale are sufficient (31).
  • The Utrecht Scale for Evaluation of Clinical Rehabilitation – Participation was shown to be a valid and reliable measure to rate participation in patients with various physical disabilities, including stroke patients (49,50).
  • The Hospital Anxiety and Depression Scale has shown good psychometric properties (34), and is a commonly used measure in stroke patients (51).
  • The first two items measure current and pre-stroke life satisfaction, respectively, and are scored on a six-point scale, ranging from 1 (very dissatisfied) to 6 (very satisfied).

Determinants

  • According to the ICF model, the factors taken into account as potential determinants can be divided into three components.
  • The first component is health condition, which in the present study covers both the pre-stroke health condition (e.g. comorbidity) and the stroke-related health condition (e.g. type of stroke).
  • The second and third components consist of personal factors (e.g. coping) and environmental factors (e.g. social support), respectively.
  • Personal factors comprise a large proportion of the potential determinants investigated in this cohort study.

Statistical analyses

  • The authors will first use descriptive statistics.
  • Multilevel analysis allows for correction for differences between study centres and inclusion of persons with partly missing data in the analyses so that all available data can be used.
  • After that, latent class growth mixture modelling will be used to investigate if there are different trajectories of QoL between two months and two years after stroke and whether different trajectories can be distinguished.
  • All analyses will be done for the patients and partners separately.

Summary and conclusions

  • The Restore4stroke Cohort study investigates the changes in the QoL of stroke patients and their partners over time, and determines factors predicting QoL, especially the influence of personal and environmental factors.
  • Traditionally, much research and rehabilitation care has focused on the physical and functional impact of a stroke (3–5).
  • That is why personal factors comprise a large proportion of the potential determinants investigated in this study.
  • As illustrated by the ICF model, it is necessary to better understand the relationships and interplay between all components of the model.
  • The authors do not consider this a problem, because QoL is a subjective concept as defined by the World Health Organization Quality of Life group as ‘individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations standards, and concerns’ (p. 153) (55).

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Citations
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Journal ArticleDOI
TL;DR: Measuring partners' burden and anxiety and depressive symptoms in the post-acute phase is recommended to trace partners at risk of long-term burden and emotional problems.

101 citations


Cites background from "A Longitudinal Cohort Study on Qual..."

  • ...The current study was part of Restore4Stroke Cohort, a general hospital-based multi-centre longitudinal cohort study [14]....

    [...]

Journal ArticleDOI
01 Oct 2018-Medicine
TL;DR: Anxiety and depression are common in the caregivers of stroke patients and are closely related to care burdens, and appropriate home care guidance, psychological counseling and social support should be provided to the caregivers to reduce their physical and mental burden.

80 citations

Journal ArticleDOI
TL;DR: Most improvement in QoL occurred up to 6 months post stroke and showed different patterns for specific domains ofQoL and for patients with and without dependency in ADL in the first week post stroke.
Abstract: Background: Little information is available about the course of quality of life (QoL) post stroke and how dependency on activities of daily living (ADL) influences this course. The aim of this study was therefore to describe the course of QoL from 2 months up to 2 years post stroke and to study the influence of ADL dependency in the first week post stroke. Methods: This is a multicenter prospective longitudinal cohort study in which 368 stroke patients were included and data were collected at 1 week, 2 months, 6 months, 12 months and 24 months post stroke. QoL assessment included measures of health-related quality of life (HRQoL) (short stroke-specific Quality of Life Scale), emotional functioning (Hospital Anxiety and Depression Scale), participation (Utrecht Scale for Evaluation of Rehabilitation-Participation), and life satisfaction (2LS). Dependency on ADL was defined as having a Barthel Index score ≤17 four days post stroke. Generalized Estimating Equations analyses were performed to examine the course of the 4 domains of QoL. Furthermore, the possible confounding effect of age, gender, marital status, level of education and discharge destination was examined. Results: Results showed that HRQoL, participation and life satisfaction improved during the first year post stroke, with most changes occurring in the first 6 months. Furthermore, patients dependent in ADL scored consistently lower on all 4 QoL domains and test occasions compared to ADL-independent patients. In both patient groups separately, no changes over time were found in emotional functioning. ADL-independent patients improved in HRQoL (p = 0.002), participation (p Conclusions: Most improvement in QoL occurred up to 6 months post stroke and showed different patterns for specific domains of QoL and for patients with and without dependency in ADL in the first week post stroke. It is therefore important to differentiate between these different domains of QoL when the long-term perspective is considered. Furthermore, patients dependent in ADL consistently scored lower on all QoL domains and did not reach the level of QoL of patients independent of QoL.

62 citations

Journal ArticleDOI
TL;DR: The findings indicate that psychological factors are the most important factors in identifying stroke patients at risk of unfavorable HRQoL trajectories and using these factors will help to identify vulnerable patients and guide rehabilitation in the early stages post stroke.
Abstract: Purpose: To identify trajectories of physical and psychosocial health-related quality of life (HRQoL) from two months to one-year post stroke and to determine the factors that are associated with t...

60 citations


Cites background from "A Longitudinal Cohort Study on Qual..."

  • ...The current study is part of the multicenter prospective longitudinal Restore4Stroke Cohort study, in which new stroke survivors were followed for two years [25]....

    [...]

Journal ArticleDOI
TL;DR: The need to pay more attention to participation restrictions in elderly stroke survivors is emphasized, highlighting the need for the development of community-based exercise programs for stroke survivors.
Abstract: Purpose: This study aims to (1) assess differences in participation restrictions between stroke survivors aged under and over 70 years and (2) identify predictors associated with favorable and unfavorable long-term participation in both age groups.Methods: Prospective cohort study in which 326 patients were assessed at stroke onset, two months and one year after stroke. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) was used to measure participation restrictions one year after stroke. Bivariate and multivariate logistic regression analyses were performed including demographic factors, stroke-related factors, emotional functioning and comorbidity as possible predictors.Results: Stroke survivors aged over 70 years perceived more participation restrictions in comparison to stroke survivors aged under 70 years one year after stroke. Independently significant predictors for unfavorable participation outcomes were advancing age, more severe stroke and anxiety sympt...

58 citations


Cites background or methods from "A Longitudinal Cohort Study on Qual..."

  • ...Major improvements in the acute treatment of stroke, such as thrombolysis and the implementation of stroke units, have increased post stroke survival rates [3]....

    [...]

  • ...The present study is part of the multicenter prospective longitudinal Restore4Stroke Cohort study and used data collected at stroke onset, two months and one year after stroke [3]....

    [...]

References
More filters
Journal ArticleDOI
TL;DR: It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
Abstract: A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.

35,518 citations

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TL;DR: A 10‐minute cognitive screening tool (Montreal Cognitive Assessment, MoCA) to assist first‐line physicians in detection of mild cognitive impairment (MCI), a clinical state that often progresses to dementia.
Abstract: Objectives: To develop a 10-minute cognitive screening tool (Montreal Cognitive Assessment, MoCA) to assist first-line physicians in detection of mild cognitive impairment (MCI), a clinical state that often progresses to dementia. Design: Validation study. Setting: A community clinic and an academic center. Participants: Ninety-four patients meeting MCI clinical criteria supported by psychometric measures, 93 patients with mild Alzheimer's disease (AD) (Mini-Mental State Examination (MMSE) score≥17), and 90 healthy elderly controls (NC). Measurements: The MoCA and MMSE were administered to all participants, and sensitivity and specificity of both measures were assessed for detection of MCI and mild AD. Results: Using a cutoff score 26, the MMSE had a sensitivity of 18% to detect MCI, whereas the MoCA detected 90% of MCI subjects. In the mild AD group, the MMSE had a sensitivity of 78%, whereas the MoCA detected 100%. Specificity was excellent for both MMSE and MoCA (100% and 87%, respectively). Conclusion: MCI as an entity is evolving and somewhat controversial. The MoCA is a brief cognitive screening tool with high sensitivity and specificity for detecting MCI as currently conceptualized in patients performing in the normal range on the MMSE.

16,037 citations

DatasetDOI
11 Feb 2013
TL;DR: It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
Abstract: A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.

7,515 citations

Journal ArticleDOI
01 May 1988-Stroke
TL;DR: The results confirm the value of the modified Rankin scale in the assessment of handicap in stroke patients; nevertheless, further improvements are possible.
Abstract: Interobserver agreement for the assessment of handicap in stroke patients was investigated in a group of 10 senior neurologists and 24 residents from two centers. One hundred patients were separately interviewed by two physicians in different combinations. The degree of handicap was recorded by each observer on the modified Rankin scale, which has six grades (0-5). The agreement rates were corrected for chance (kappa statistics). Both physicians agreed on the degree of handicap in 65 patients; they differed by one grade in 32 patients and by two grades in 3 patients. Kappa for all pairwise observations was 0.56; the value for weighted kappa (with quadratic disagreement weights) was 0.91. Our results confirm the value of the modified Rankin scale in the assessment of handicap in stroke patients; nevertheless, further improvements are possible.

5,218 citations

Journal ArticleDOI
01 Jul 1989-Stroke
TL;DR: A 15-item neurologic examination stroke scale for use in acute stroke therapy trials was designed and interrater reliability for the scale was found to be high, and test-retest reliability was also high, suggesting acceptable examination and scale validity.
Abstract: We designed a 15-item neurologic examination stroke scale for use in acute stroke therapy trials. In a study of 24 stroke patients, interrater reliability for the scale was found to be high (mean kappa = 0.69), and test-retest reliability was also high (mean kappa = 0.66-0.77). Test-retest reliability did not differ significantly among a neurologist, a neurology house officer, a neurology nurse, or an emergency department nurse. The stroke scale validity was assessed by comparing the scale scores obtained prospectively on 65 acute stroke patients to the patients' infarction size as measured by computed tomography scan at 1 week and to the patients' clinical outcome as determined at 3 months. These correlations (scale-lesion size r = 0.68, scale-outcome r = 0.79) suggested acceptable examination and scale validity. Of the 15 test items, the most interrater reliable item (pupillary response) had low validity. Less reliable items such as upper or lower extremity motor function were more valid. We discuss methods for improving the reliability and validity of brief examination scales to be used in stroke therapy trials.

4,769 citations

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