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Sickle Cell DiseaseDREPADONCT03786549

Pediatric -Adult Care Transition Program of Patients With Sickle Cell Disease

A study testing pediatric-adult care transition program in people with Sickle Cell Disease, run by Hospices Civils de Lyon at 8 sites in France.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
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Trial summary

Background The pediatric-adult care transition is a risk-disrupting time for patients with chronic disease. This care transition takes place during adolescence; a period of psychological upheavals and adaptations of family roles. Read more about this study

Who is it for?
Ages 16 to 17 years
Conditions the study is for
Sickle Cell Disease
What is being tested?
pediatric-adult care transition program
Could I receive a placebo?
No, everyone receives an active treatment
How many people
196 participants
Where
8 sitesFrance
Study dates
16 Jan 2019to 16 Apr 2027
Phase
Interventional
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 16 to 17 years
  • All sexes
  • No healthy volunteers
  • Child

Who may be able to join

  • For patients :
  • Age: 16-17 years,
  • With major sickle cell syndrome, defined by hemoglobinopathy of homozygosity SS, or double heterozygosity SC or Sβ-thalassemia,
  • Benefiting from social insurance of the type "Affection of long duration" (ALD).
  • For family members :
  • Included children's parents or legal representatives,
  • Accepting to participate in the study and having signed the informed consent.

Who cannot join

  • Presenting a cognitive or psychiatric disorder known and major that may hinder interventions or evaluation, the judgment of the investigator, and / or having a family history with this type of disorders,
  • Cured of SCD by an allograft of hematopoietic stem cells.

Trial locations and contacts

8 sites in 1 country. Contact the study team or a site near you to ask about taking part.

8 sites in 1 country

France8 sites, 8 recruiting
  • Centre Hospitalier Intercommunal de Creteil

    Créteil

    Corinne Pondarre

    Corinne Pondarre

    Not yet recruiting
  • Hôpital Mondor

    Créteil

    Frédéric Galactéros

    Frédéric Galactéros

    Not yet recruiting
  • CHU de Fort de France

    Fort-de-France-La Martinique, La Martinique

    Gisèle ELANA, MD

    Gisèle ELANA

    Not yet recruiting
  • Hôpital Bicêtre

    Le Kremlin-Bicêtre

    Corinne Guitton

    Corinne Guitton

    Not yet recruiting
  • Hospices Civils de Lyon

    Lyon

    Alexandra Gauthier- Vasserot

    Giovanna Cannas

    Recruiting
  • Hôpital Européen Georges Pompidou

    Paris

    Jean- Benoît Arlet

    Jean- Benoît Arlet

    Not yet recruiting
  • Hôpital Necker

    Paris

    Marianne De Montalembert

    Marianne De Montalembert

    Not yet recruiting
  • Centre Hospitalier de Pontoise

    Pontoise

    Stéphanie Eyssette- Guerreau

    Stéphanie Eyssette- Guerreau

    Not yet recruiting

Other trials in France

About this study

Official title: Impact of a Pediatric-adult Care Transition Program on the Health Status of Patients With Sickle Cell Disease - A Randomized Controlled Trial

Background The pediatric-adult care transition is a risk-disrupting time for patients with chronic disease. This care transition takes place during adolescence; a period of psychological upheavals and adaptations of family roles. During this period, medication adherence is non-optimal and absenteeism at medical appointments is high.

Sickle cell disease (SCD) is the first genetic disease detected in France. It is chronic disease characterized by frequent painful vaso-occlusive crises (VOC) requiring emergency hospitalization when they are severe. Other serious complications are acute chest syndromes (ACS) and stroke.

Read more

In order to improve the health status of teenagers with sickle cell disease, it is necessary to anticipate this care transition and to involve the pediatric and adult sectors. The biopsychosocial health approach and the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) describe a care transition integrating bioclinical and psychosocial factors such as integration of the patient's family, education on disease and therapeutics, psychological management of pain and medico-social orientation.

The pediatric-adult transition program proposed is based on this biopsychosocial approach. It aims to improve the health status of adolescents with SCD, their quality of life and the use of health care service.

Objective of the study To assess the impact of a pediatric-adult transition program on the incidence of sickle-cell-related complications leading to hospitalization on 24-months after transfer to the adult sector.

The evaluation focuses on severe complications leading to hospitalization, such as VOC, ACS, and stroke.

Study design Multicenter Open-label individual Randomized Controlled Trial Population : Patients aged at least 16 years old with sickle cell disease, and their parents (or legal representatives Number of subject : 196 patients (98 patients by arm) The study will last 24 months Expected results For patients and families Better health and quality of life for patients is expected, including better use of medical care after the transition program. It is also expected a better experience of the pediatric-adult care transition and indirectly a better experience of intrafamilial relations.

For health professionals This project is expected to provide solutions to improve the pediatric-adult care transition of patients with chronic disease. Indeed, the methodological quality of the study will make it possible to evaluate the efficiency of the proposed program, to possibly adapt it and test it to other chronic diseases presenting the same care transition problematic.

In terms of public health SCD mainly affects populations of sub-Saharan origin, with low visibility and high social vulnerability. By focusing on this population, this project will reduce the social inequalities in health, experienced by patients with SCD and their families.

By improving the health, quality of life and care of patients with SCD, this project is expected to decrease the cost of the pediatric-adult care transition period.

Being tested
pediatric-adult care transition program
Keywords
sickle cell disease (SDC), Pediatric-adult care transition
Medical subject headings
Anemia, Sickle Cell

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • pediatric-adult care transition programOther

    Three structured axes of multidisciplinary interventions are added to the usual follow-up for the patients drawn in this interventional arm. Those axes integrate the bioclinical medical care and include the parents of the adolescent

    Three axes are :

    • Educative, family (patient and parent), at home
    • Psychological, with the patient individually
    • Medico-social orientation, group of patients
Study groups in NCT03786549
Study groupRoleWhat they receive
ControlNo interventionPatients included in this arm wil have usual follow-up.
Care transitional programExperimentalPatients included in this arm will get a care transitional program. Three structured axes of multidisciplinary interventions are added to the usual follow-up for the patients drawn in this interventional arm. Those axes integrate the bioclinical medical care and include the parents of the adolescent Three axes are : * Educative, family (patient and parent), at home * Psychological, with the patient individually * Medico-social orientation, group of patients
Receives: Other: pediatric-adult care transition program

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Incidence of sickle cell related severe complications leading to hospitalization

    Number of hospital admission or emergency visit in the index hospital

    Measured: Within 24 months after transfer to the adult sector

Secondary outcomes (35)
  1. Frequency of emergency visits in the index hospital

    Frequency of emergency visits in the index hospital Within inclusion and transfer to the adult sector

    Measured: Up to 2 years

  2. Frequency of emergency visits in the index hospital

    Measured: Within 12 months after transfer to the adult sector

  3. Frequency of emergency visits in the index hospital

    Measured: Within 12 and 24 months after transfer to the adult sector

  4. Medication Intake Survey-Asthma (MIS-A) questionnaire score

    Medication adherence evaluation at inclusion

    Measured: At inclusion

  5. Medication Rating Scale (MARS) questionnaire score

    Medication adherence evaluation at inclusion

    Measured: At inclusion

  6. MIS-A questionnaire score

    Medication adherence evaluation At transfer to the adult sector

    Measured: Up to 2 years

  7. MARS questionnaire score

    Medication adherence evaluation At transfer to the adult sector

    Measured: Up to 2 years

  8. MIS-A questionnaire score

    Medication adherence evaluation within 12 months after transfer to the adult sector

    Measured: within 12 months after transfer to the adult sector

  9. MARS questionnaire score

    This score will allow medication adherence evaluation within 12 months after transfer to the adult sector

    Measured: within 12 months after transfer to the adult sector

  10. MIS-A questionnaire score

    Medication adherence evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  11. MARS questionnaire score

    Medication adherence evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  12. Number of days absent at school

    Scholarly Absenteeism evaluation At transfer to the adult sector

    Measured: Up to 2 years

  13. Number of days absent at school

    Scholarly Absenteeism evaluation within 12 months after transfer to the adult sector

    Measured: within 12 months after transfer to the adult sector

  14. Number of days absent at school

    Scholarly Absenteeism evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  15. World Health Organization Quality of Life (WHOQOL) questionnaire score

    Quality of Life evaluation At inclusion

    Measured: At inclusion

  16. WHOQOL questionnaire score

    Quality of Life evaluation At transfer to the adult sector

    Measured: Up to 2 years

  17. WHOQOL questionnaire score

    Quality of Life evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  18. EUropean Health Literacy questionnaire (HLS-EU-Q16) score

    This will allow Health Literacy evaluation

    Measured: At inclusion

  19. HLS-EU-Q16 score

    Health Literacy evaluation At transfer to the adult sector

    Measured: Up to 2 years

  20. HLS-EU-Q16 score

    Health Literacy evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  21. Disease knowledge

    Questionnaire developed for this study

    Measured: At inclusion

  22. Disease knowledge

    Questionnaire developed for this study

    Measured: Up to 2 years

  23. Disease knowledge

    Questionnaire developed for this study

    Measured: within 24 months after transfer to the adult sector

  24. Patient activation measure-13 items questionnaire score

    Patient activation At inclusion

    Measured: At inclusion

  25. Patient activation measure-13 items questionnaire score

    Patient activation At transfer to the adult sector

    Measured: Up to 2 years

  26. Patient activation measure-13 items questionnaire score

    Patient activation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  27. Self efficacy specific instrument - sickle cell disease (SCD-SES) questionnaire score

    Self efficacy evaluation at inclusion

    Measured: At inclusion

  28. SCD-SES questionnaire score

    Self efficacy evaluation At transfer to the adult sector

    Measured: Up to 2 years

  29. SCD-SES questionnaire score

    Self efficacy evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  30. Transition readiness assessment questionnaire (TRAQ) questionnaire score

    Transition readiness evaluation at inclusion

    Measured: At inclusion

  31. TRAQ questionnaire score

    Transition readiness evaluation At transfer to the adult sector

    Measured: Up to 2 years

  32. TRAQ questionnaire score

    Transition readiness evaluation within 24 months after transfer to the adult sector

    Measured: within 24 months after transfer to the adult sector

  33. cost effectiveness ratio

    Cost analysis at the end of the study

    Measured: Up to 4 years

  34. number of pediatric-adult transition program sessions performed

    number of interventions performed per patient and date of implementation At the end of the study

    Measured: Up to 4 years

  35. type of pediatric-adult transition program sessions performed

    type of interventions performed per patient and date of implementation At the end of the study

    Measured: Up to 4 years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted26 Dec 2018
  2. Study start16 Jan 2019
  3. Primary completion16 Apr 2027 (estimated)
  4. Study completion16 Apr 2027 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase N/A
Primary purpose
Health services research
Allocation
Randomised
Intervention model
Parallel groups
Masking
None (open label)
Enrolment
196 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT03786549
Sponsor's protocol ID
69HCL18_0039
Other IDs
2018-A02198-47
Acronym
DREPADO
Status last verified
Jun 2024
First submitted
13 Dec 2018
Last updated
21 Jun 2024
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No

Publications

  • Hoegy D, Bleyzac N, Gauthier-Vasserot A, Cannas G, Denis A, Hot A, Bertrand Y, Occelli P, Touzet S, Dussart C, Janoly-Dumenil A; DREPADO study group. 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). Trials. 2020 Feb 10;21(1):152. doi: 10.1186/s13063-019-4009-9.

    PubMed 32039737

Questions about this trial

What is this clinical trial studying?

A study testing pediatric-adult care transition program in people with Sickle Cell Disease, run by Hospices Civils de Lyon at 8 sites in France.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 7 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 21 Jun 2024. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 8 sites in France. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Alexandra GAUTHIER VASSEROT, DR (04 69 16 65 72 ext. +33, alexandra.gauthier@ihope.fr), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Incidence of sickle cell related severe complications leading to hospitalization (time frame: Within 24 months after transfer to the adult sector). It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT03786549, which also lists 1 linked publication.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 21 Jun 2024.

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