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)

Table 2 Data collection plan

Outcomes		Time point				Population		Data sources
Outcomes		T-inclusion	T-transfer	T-12	T-24	Patient	Parent	Data sources
Use of care	Hospitalisations for VOC, ACS, stroke		X		X	X		Medical records
Use of care	Emergency visits, medical consultations, imaging exams		X		X	X		Medical records
Medication adherence		X	X	X	X	X		2 questionnaires (MARS and adapted-MIS-A)
School absenteeism			X		X	X	X	Auto declaration
Quality of life		X	X		X	X		26-item questionnaire (WHOQOL-Brief)
Health literacy		X	X		X	X		16-item questionnaire (HLS-EU-Q16)
Disease and therapeutic knowledge		X	X		X	X	X	36-item questionnaire
Patient activation		X	X		X	X		13-item questionnaire
Sense of self-efficacy						X		9-item questionnaire (SCD-SES)
Transition preparation		X	X		X	X		20-item questionnaire (TRAQ)
Pain perceptions	At home			X	X	X		Auto declaration (book)
Pain perceptions	Intensity during hospitalisations		X		X	X		Medical records

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

ISSN: 1745-6215