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/.
Existence, triggers, and coping with chronic sorrow: a qualitative study of caretakers of children with sickle cell disease in a National Referral Hospital in Kampala, Uganda