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Table 2 Data collection plan

From: Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

OutcomesTime pointPopulationData sources
T-inclusionT-transferT-12T-24PatientParent
Use of careHospitalisations for VOC, ACS, stroke X XX Medical records
Emergency visits, medical consultations, imaging exams X XX Medical records
Medication adherenceXXXXX 2 questionnaires (MARS and adapted-MIS-A)
School absenteeism X XXXAuto declaration
Quality of lifeXX XX 26-item questionnaire (WHOQOL-Brief)
Health literacyXX XX 16-item questionnaire (HLS-EU-Q16)
Disease and therapeutic knowledgeXX XXX36-item questionnaire
Patient activationXX XX 13-item questionnaire
Sense of self-efficacy    X 9-item questionnaire (SCD-SES)
Transition preparationXX XX 20-item questionnaire (TRAQ)
Pain perceptionsAt home  XXX Auto declaration (book)
Intensity during hospitalisations X XX Medical records
  1. ACS acute chest syndrome, HLS-EU-Q16 European Health Literacy Questionnaire, MARS Medication Adherence Report Scale, adapted-MIS-A Medication Intake Survey-Asthma, SCD-SES Self-Efficacy Specific instrument – Sickle Cell Disease, TRAQ Transition Readiness Assessment Questionnaire, VOC vaso-occlusive crisis, WHOQOL-Brief World Health Organization Quality of Life brief questionnaire