The goal of this observational study is to learn about quality of life, stress and caregiver burden in patients with stroke and their caregivers.
The main question is:
• to discover the factors associated with quality of life and stress in patient-caregiver dyads.
Participants will be asked to fill out questionnaires and agree to provide a hair sample (in order to measure stress hormones in hair) and consent to use of their routine clinical and laboratory data.
Researchers will compare a group of participants without stroke to establish a comparable baseline.
over 18 years old
No previous stroke OR previous stroke >3 years ago
No significant disability (maximum mRS 1)
ambulatory patients at the University Hospital of Zurich (USZ), Dept. of Neurology
over 18 years old
Patients diagnosed with either transient ischemic attack, ischemic stroke or intracerebral hemorrhage and their caregivers
Caregiver of a patient as described above, age over 18 years
Hospitalized or ambulatory patients at the University Hospital of Zurich (USZ) included within 28 days from event.
Control group: We will include 40 patients without previous stroke OR patients with a minor stroke \> 3 years ago and no sustained significant disability (mRS 0 or 1) along with their close relative (to simulate informal caregivers) (total 80 participants). Main group: We will include 300 patients and informal caregivers with a first cerebrovascular event treated at our clinic \> 18 years. The caregivers will be defined as the closest person to the patient with the most contact. (total 600 participants)
Cohort
Prospective
questionnaire, hair samples, blood samples, clinical exam
Diagnostic testThe following parameters will be sequentially assessed in caregivers and patients (baseline, at 3 months and at 12 months): 1) quality of life / functioning will be determined through questionnaires (SF-36, EQ-5DL, ECOG (Eastern Cooperative Oncology Group) / Karnofsky, Barthel Index, ICIQ) 2) stress levels \& anxiety levels, caregiver burden will be assessed by the following questionnaires: Distress Thermometer, SBQ-G, GAD-7, PHQ-9, PSS-10, ZBI, PAC. Cortisol will be measured in hair to indicate stress within the past 3 months \[18\]. Fasting glucose, lipid profiles and HbA1c along with blood count, sodium, potassium, creatinine, TSH (thyroid-stimulating hormone) will be measured in routine blood samples from patients at the time of clinical checkups. Blood pressure, pulse and BMI will be determined during clinical visit in patients and additionally in caregivers.
Quality of Life as assessed via Short Form - 36 (SF-36)
will be assessed using Short Form - 36 (SF-36) Multi-item scale with 8 domains assessing health related quality of life: * limitations in physical activities * limitations in social activities * limitations in usual role activities because * pain * limitations in social role activities * vitality * overall mental health * overall health Domains are scored seperately; Values span from 0 to 100, higher values indicate fewer limitations
Stress
as assessed using Perceived Stress Scale - 10 (PSS-10) Scoring is based on 2 subscales: Subscale 1: Perceived self-efficacy (PSE), range: (4-20) Subscale 2: Perceived helplessness (PH), range: (6-30) Total score PSS-10 is evaluated by adding both sub scale scores. Values span from 10 to 50, higher values indicate higher levels of stress
Positive Aspects of Caregiving:
Measure of caregiver burden Questionnaire: 11 items / Likert scales (1-5) Values span from 11 to 55, higher values indicate positive aspects of caregiving
Zarit Burden Interview:
Measure of caregiver burden 22 items / Likert scales (0-4) Values span from 0 to 88, higher values indicate higher caregiver burden
Stroke Related Quality of Life
will be assessed using Stroke Impact Scale 3.0 (SIS-3.0) SIS-3.0 includes 60 items and assesses 9 domains using Likert scales: * Strength - 4 items * Hand function - 5 items * Activities of daily living - 10 items * Mobility - 9 items * Communication - 7 items * Emotion - 9 items * Memory and thinking - 7 items * Participation/Role function - 8 items * Perceived recovery since stroke onset - single-item VAS (visual analog scale) Domains are scored seperately; Values span from 0 to 100, higher values indicate fewer limitations
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