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)

Abstract

Background: Thanks to the advancements in medical care, a majority of sickle cell disease patients worldwide live beyond 18 years of age, and therefore patients initially followed in paediatric departments are then transferred to adult departments. This paediatric-adult care transition is a period with an increased risk of discontinuity of care and so morbidity and mortality. During this period, the patient will have to manage new interlocutors and places of care, and personal issues related to the period of adolescence. To take into consideration all these aspects, an interesting approach is to refer to the patient as a whole system as presented in biopsychosocial approach. The aim of this trial is to evaluate the impact of the proposed biopsychosocial paediatric-adult transition programme. Methods: The DREPADO study is a multicentre randomised control trial comparing a control group ( Arm A ) versus an interventional group with paediatric-adult transition programme based on a biopsychosocial approach ( Arm B ). To be included, patients should suffer of SS, SC or Sβ-form of sickle cell disease and aged between 16 and 17 years. The randomisation in a 1:1 ratio assigns the Arm A or B . The primary outcome is the number of hospital admissions and emergency in the index hospital for complications, in the 2-years after the first consultation in the adult department of care. Secondary outcomes consider the quality of life, but also included coping skills such as self-efficacy feeling and disease knowledge. To provide patient and parent knowledge and coping skills, the transition program is composed of 3 axis : educational, psychological and social, conducted in individual and group.Discussion: By providing self-care knowledge and coping skills related to SCD and therapeutics, helping patient's empowerment related to pain management and emotions and facilitating the relationship to oneself, others and care in the Arm B of DREPADO study, we believe that the morbidity and mortality of patients with SCD may be reduced after the proposed paediatric-adult transition programme. Trial registration: ClinicalTrials.gov, ID: NCT03786549; registered on 17 th December 2018; https://clinicaltrials.gov/.

A scoping review of transition interventions for young adults with sickle cell disease

“…The authors reported that self‐efficacy and knowledge did not increase with the age of the patient, and also reported difficulties with uptake of the program. The other study was a protocol paper for an RCT with no published results 41 . The program is described as a hospital‐based transition program to be delivered to patients when they are 16–17 years older.…”

“…The other study was a protocol paper for an RCT with no published results. 41 The program is described as a hospital-based transition program to be delivered to patients when they are 16-17 years older. The authors hypothesize that those participating in the transition program will have lower rates of hospital admissions and emergency room visits, as well as demonstrate improvements in SCD knowledge and self-efficacy.…”

Cognitive performance as a predictor of healthcare transition in sickle cell disease

“…We examined two transition latencies: (i) within six months, based on national guidelines; 30 and (ii) within two months, as an exploratory analysis, based on recommendations from the 2017 Delphi survey 31 . Adult care retention was defined as continuous engagement in adult care (with the same or different adult SCD provider) at 12 and 24 months timepoints, as previously studied 32 . We analysed both transition outcomes as binary and continuous variables (interval from last paediatric to first adult visit, and from first to last adult visit).…”