Due to the brutality of stroke and increasingly shorter lengths of hospital stay, patients and their families must adapt quickly to the patient's new state of health and the new role of caregiver for family members. Patients and caregivers report a significant need for advice and information during this transition period. Thus, the provision of information through an Internet platform could meet these characteristics, in association with individualised support by a case-manager to ensure continuity of care and improve care pathway. The investigating team's hypothesis is that, through comprehensive, individualized and flexible support for patients and their caregivers, a patient-centred post-stroke hospital/home transition program, combining an Internet platform and telephone follow-up by a case-manager, could improve patients' level of participation and quality of life.
Going back home following a stroke is a key step for the patient and his or her relatives. Due to the brutality of stroke and increasingly shorter lengths of hospital stay, patients and their families must adapt quickly to the patient's new state of health and the new role of caregiver for family members. Currently, 70% of patients return home directly after treatment in a stroke center. Following the acute phase, the patient's care path involves many health and social workers. However, the health care system is complex and difficult for patients and their caregivers to understand. A lack of support during the hospital/home transition has significant negative consequences for the patient (reduced functional prognosis, quality of life and reintegration, increased risk of recurrence) and his or her caregiver (increased perceived burden, decreased quality of life, socio-economic impact). Patients and caregivers report a significant need for advice and information during this transition period. They are looking for individualized, good quality information and whose nature evolves over time with the needs and recovery of the patient. Thus, the provision of information through an Internet platform could meet these characteristics, in association with individualised support by a case-manager to ensure continuity of care and improve care pathway. In France, no such program has been developed to date for stroke. Existing transition programmes mainly focus on home rehabilitation and do not offer a comprehensive approach to the situation, integrating caregivers. In addition, no programs have been developed in partnership with patients and families to best meet their needs. The investigator's hypothesis is that, through comprehensive, individualized and flexible support for patients and their caregivers, a patient-centred post-stroke hospital/home transition program, combining an Internet platform and telephone follow-up by a case-manager, could improve patients' level of participation and quality of life.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
200
4 participatory co-design workshops lasting 4 hours each that will follow a "user-centered design" approach: identification of end-user needs, prototyping/development of the intervention (case-management procedures and platform), iterative improvement, end-user testing. Based on the cognitive social theory underpinning the intervention, scientific literature, an overview of existing organizations and the results of the Stroke 69 and Arthur Tybra studies (patient needs following the acute phase), the advisory committee will: * Define the case-manager's profile, and required knowledge and skills * Identify the resources and tools to be proposed on the Internet platform * Test the tools and content * Refine the program evaluation criteria * Test and validate the study procedures.
Participation at 6 months after hospital discharge
Patient participation score, measured by the score obtained in the "participation" dimension of the stroke-specific quality of life scale: Stroke Impact Scale 6 months after discharge from hospital
Time frame: 6 months
Participation at 12 months
Participation score at 12 months after discharged home
Time frame: 12 months
Quality of life at 6 months after hospital discharge: Stroke Impact Scale (SIS)
Score of the other dimensions of the Stroke Impact Scale (SIS) at 6 months: force dimension, manual function, daily activities, mobility, communication, emotions, memory/thinking and global recovery.
Time frame: 6 months
Quality of life at 12 months after hospital discharge: Stroke Impact Scale (SIS)
Score of the other dimensions of the Stroke Impact Scale (SIS) at 12 months: force dimension, manual function, daily activities, mobility, communication, emotions, memory/thinking and global recovery.
Time frame: 12 months
Anxiety and depression scores at 6 months after hospital discharge
Change of anxiety and depression scores between discharge home and 6 months measured by the Hospital Anxiety and Depression scale (HADS) score.
Time frame: 6 months
Anxiety and depression scores at 12 months after hospital discharge
Change of anxiety and depression scores between discharge home and 12 months measured by the Hospital Anxiety and Depression scale (HADS) score.
Time frame: 12 months
Fatigue at 6 months after hospital discharge
Changes in fatigue level measured by the Pichot scale between discharge home and 6 months
Time frame: 6 months
Fatigue at 12 months after hospital discharge
Changes in fatigue level measured by the Pichot scale between discharge home and 12 months
Time frame: 12 months
Sleep quality at 6 months after hospital discharge: Pittsburgh scale
Sleep quality measured by the Pittsburgh scale between discharge home and 6 months
Time frame: 6 months
Sleep quality at 12 months after hospital discharge: Pittsburgh scale
Sleep quality measured by the Pittsburgh scale between discharge home and 12 months
Time frame: 12 months
Sleepiness at 6 months after hospital discharge
Sleepiness level measured by the Epworth scale between discharge home and 6 months
Time frame: 6 months
Sleepiness at 12 months after hospital discharge
Sleepiness level measured by the Epworth scale between discharge home and 12 months
Time frame: 12 months
Prognosis at 12 months after hospital discharge (Stroke recurrence)
Stroke recurrence within 12 months, reported by the patient and/or caregiver and validated by checking the hospitalization report.
Time frame: 12 months
Prognosis at 12 months after hospital discharge (hospitalizations)
Unscheduled hospitalizations or emergency room visits within 12 months of discharge from hospital.
Time frame: 12 months
Prognosis at 12 months after hospital discharge (neurologic disability)
Modified Rankin Score at 12-month
Time frame: 12 months
Prognosis at 12 months after hospital discharge (death)
Death at 12 months
Time frame: 12 months
Cognitive disorders at hospital discharge
Cognitive disorders at discharge from hospital measured by the Montreal Cognitive Assessment (MOCA) scale
Time frame: 1 day
Cognitive disorders at 12 months after hospital discharge
Cognitive disorders at 12 months measured by the Montreal Cognitive Assessment (MOCA) scale
Time frame: 12 months
Access to care at 12 months after hospital discharge
Consumption of care (consultations and hospitalizations) collected from the regional health insurance database
Time frame: 12 months
Access to social services at 12 months after hospital discharge
Requests for social support made
Time frame: 12 months
Maintaining hospital discharge prescriptions at 6 months after hospital discharge
Therapeutic persistence: maintenance of therapeutic prescriptions for discharge from hospital at 6 months. The prescriptions for secondary preventive treatment of stroke will be considered. Data will be collected by interviewing the patient.
Time frame: 6 months
Maintaining hospital discharge prescriptions at 12 months after hospital discharge
Therapeutic persistence: maintenance of therapeutic prescriptions for discharge from hospital at 12 months. The prescriptions for secondary preventive treatment of stroke will be considered. Data will be collected by interviewing the patient.
Time frame: 12 months
Occupational status at 12 months after hospital discharge
Occupational status at 12 months: return to work will be defined by working at least one day per week. Among these patients, resumption of the same professional activity, professional reclassification or adapted working time, early retirement.
Time frame: 12 months
Social isolation at discharge from hospital
Social isolation at discharge from hospital measured by the Social Support score Questionnaire 6
Time frame: 1 day
Social isolation at 6 months after hospital discharge
Social isolation at 6 months after discharge from hospital measured by the Social Support score
Time frame: 6 months
Social isolation at 12 months after hospital discharge
Social isolation at 12 months after discharge from hospital measured by the Social Support score
Time frame: 12 months
Patient activation level at discharge from hospital
Patient activation will be measured by the score obtained at the "Patient activation Measure" scale. This questionnaire is composed of 22 items that assess the patient's knowledge, skills and confidence level to manage their own situation (self-management).
Time frame: 1 day
Patient activation level at 6 months after hospital discharge
Patient activation will be measured by the score obtained at the "Patient activation Measure" scale. This questionnaire is composed of 22 items that assess the patient's knowledge, skills and confidence level to manage their own situation (self-management).
Time frame: 6 months
Patient activation level at 12 months after hospital discharge
Patient activation will be measured by the score obtained at the "Patient activation Measure" scale. This questionnaire is composed of 22 items that assess the patient's knowledge, skills and confidence level to manage their own situation (self-management).
Time frame: 12 months
Maintenance at home at 12 months after hospital discharge
Data concerning the patient's place of residence 12 months after hospital discharge will be collected by interviewing the patient
Time frame: 12 months
Satisfaction with the support received upon return home: ad-hoc questionnaire
Satisfaction with the support received upon return home, measured at 12 months by an ad-hoc questionnaire
Time frame: 12 months
Feeling towards information at 6 months after hospital discharge: ad-hoc questionnaire
Feeling of information about stroke and medical and social care at 6 months through an ad-hoc questionnaire
Time frame: 6 months
Feeling towards information at 12 months after hospital discharge: ad-hoc questionnaire
Feeling of information about stroke and medical and social care at 12 months through an ad-hoc questionnaire
Time frame: 12 months
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