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Transition from paediatric to adult care for patients with sickle cell disease
Mariane de Montalembert1, Corinne Guitton,
1Department of Paediatrics, Hopital Necker-Enfants Malades, Paris, France; Paris Descartes University, Paris, France.
Insights
Transitioning young patients with sickle cell disease (SCD) to adult care is a high-risk period. Structured programs are needed to support this critical phase and improve long-term outcomes for SCD patients.
Area of Science:
- Hematology
- Pediatric Medicine
- Adult Internal Medicine
Background:
- Sickle Cell Disease (SCD) has evolved from a fatal childhood illness to a chronic condition requiring lifelong management.
- The transition from pediatric to adult healthcare is a critical and high-risk period for SCD patients.
- This transition is associated with increased hospitalizations, mortality, and challenges related to disease progression, psychological factors, and limited adult care resources.
Purpose of the Study:
- To highlight the critical nature of the transition period for patients with Sickle Cell Disease.
- To identify the multifaceted challenges patients face during this transition.
- To emphasize the need for structured transition programs to mitigate risks and improve outcomes.
Main Methods:
- Review of current understanding of SCD patient transition challenges.
- Analysis of factors contributing to increased risk during care transition.
- Examination of proposed transition program components.
Main Results:
- The transition period is marked by increased hospital admissions and mortality.
- Contributing factors include disease progression, psychological distress, and inadequate adult care infrastructure.
- Adolescent developmental changes and insurance issues exacerbate transition difficulties.
Conclusions:
- Structured transition programs, involving early planning, multidisciplinary teams, and parental involvement, are essential.
- These programs should span several years and include tailored resources.
- Urgent evaluation of transition programs is needed to ensure their effectiveness in managing chronic SCD.
Abstract:
Advances achieved over the last three decades have transformed sickle cell disease (SCD) from a fatal childhood disease to a long-term chronic condition. Consequently, patients must transition from paediatric to adult care. The transition is a high-risk period associated with increases in hospital admissions and death. The factors underlying this increased risk include not only characteristics of the disease itself, with the accumulation of disabilities and progression of organ damage, but also psychological factors and a frequent paucity of adult-care resources for SCD. Leaving the familiar paediatric team causes marked anxiety in many patients. The transition of care coincides with the many other transitions that characterize the emotional, social and academic development of adolescents. The shift from protection by parents and physicians to independent self-management may be difficult. Finally, young adults may have limited access to health insurance. In recent years, many medical groups have suggested the development of transitioning programmes combining transition schedules, printed and web-based materials, and, in some cases, transition-dedicated physicians, nurses and psychologists. Transition must begin early, involve both the paediatric and the adult team, direct appropriate attention to the parents and occur over a period of several years. Evaluations of these programmes are urgently needed.
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