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Table 1 Summary of Stroke Patient Data Collection – PAPASéPA

From: Post-stroke pathway analysis and link with one year sequelae in a French cohort of stroke patients: the PAPASePA protocol study

 

Inclusion visit

Follow-up at 3 months post-stroke

Follow-up at 1 year post-stroke

Verification of eligibility criteria

  

Patient information1 + Oral consent

  

Data on the care, socio-demographic and clinical pathways (history, severity, complication during the stay ...) to the acute phase (pre-hospitalization and hospitalization) from the ObA2 Observatory 2

  

Hospitalization data, consultations, acts, outpatient care from the SNDS3

Continuous collection

Clinical data (ad hoc collection):

    - Severity of stroke: NIHSS at discharge

  

    - Risk factors (alcohol)

  

Stroke pathways data (ad hoc collection)4

    - Patient referral 4

  

    - Level of education 5

  

    - Professionnal activity 5

  

    - Marital status 5

    - Cohabitation status 5

    - Ability to drive 5

    - Place of life 5

    - Participation in a therapeutic education program 5

 

    - Medical and social care 5

 

    - Allowances for disability 5

 

    - Family/Caregiver 5

 

    - Development and technique to improve autonomy and home care 5

 

    - Technical assistance for walking 5

 

    - Legal background 5

 

Sequelae post-stroke (ad hoc collection)

 Cognitive disorders (TICS*) 5

 

 Anxiety-depressive disorders (HADS**)(Self-assessment)6

 

 Fatigue (FSS***) (Self-assessment)6

 

 Activity limitations (BI ǂ) (Self-assessment)6

 Activity limitations (MRSǁ) 5

 Participation restriction (CIQ-R§) (Self-assessment) 6

 

  1. *Telephone Interview for Cognitive Status; **hospital anxiety and depression scale; ***Fatigue Severity Scale; ǂBarthel Index; ǁmodified Ranking scale; §Community Questionnaire
  2. 1 Address; telephone number
  3. 2 Type of stroke; Severity (NIHSS) at admission; Gender; Age; History of Neuro-cardiovascular; History of neuropsychiatric disorders; Anticoagulant / antiaggregant treatments; Rankin before stroke; Date/time start of symptoms; Date/ time call to general practitioner; Date/time call to emergency medical services; Place of occurrence of the stroke; Mode of transport; Date/time of admission to hospital; Type of hospitalization unit; Performing thrombolysis / tele-thrombolysis / thrombectomy; Type of antithrombotic treatment; Complication during stay; duration of stay
  4. 3 Number / type / duration of hospitalization in medicine or surgery, rehabilitation, psychiatry departments. Hospitalization at home; Number / type of medical and paramedical consultations at hospital; Medical ambulatory care: number / type of medical consultations (general practitioner, neurologist, functional rehabilitation physician, cardiologist) and number of care periods, total duration of each care period / type of paramedical consultations (physiotherapy; speech therapy; orthopsy); Quantity of drug deliveries (antiaggregant, antihypertensive, statin or anticoagulant treatment, analgesic), external medical consultations for neurology, rehabilitation, cardiology in health institutions; Vital status of patients
  5. 4 Patient referral (admission to the hospitalization area of the institution, transfer to another institution), Level of education (INSEE classification); Marital status (Married - Accessed - Partner; Separated - Divorced – Widowed; Single); Cohabitation status (couple; in family- friends; institution), Ability to drive (yes, no); Place of life (home, institution, medico-social structure), Medical-social care (services to support social life, services to help and support at home, services to provide nursing care at home, services to provide medical and social support), Family/Caregiver (yes, no); Development and technique to improve autonomy (yes, no); Legal background (Curatorship, Guardianship)
  6. 5 Data collected by telephone by the nurse
  7. 6 Postal delivery to the participant’s home