Contributions
Abstract: EP1217
Type: E-Poster Presentation
Session title: Sickle cell disease
Background
From newborn screening to vaccinations to disease-modifying therapies, the evolution of medicine has potentiated the livelihood of children and adolescents with Sickle Cell Disease (SCD). Over 90% of children with SCD now survive into adulthood in high resource countries—however, mortality rates have not improved in young adults. Challenges in continuing care emerge as they transition from a heavily contiguous pediatric healthcare model to an increasingly self-reliant adult healthcare model.
Aims
The goal of this study is to identify potential facilitators and barriers to a successful transition in care.
Methods
The Comprehensive Sickle Cell Center at UAB serves a large area of Alabama, including many surrounding cities. The pediatric program is housed in Birmingham, AL but has outreach clinics in Montgomery, Opelika, and Tuscaloosa, AL. It provides care for approximately 900 children with SCD. The adult program only has one clinic located in Birmingham, AL. With IRB approval, we performed a retrospective medical chart review of all individuals with SCD (all genotypes) aged 18-24 (as of January 31, 2019) who were previously treated by hematology at Children’s of Alabama. To be included, patients must have been seen at least twice prior to turning 18 years old and have confirmed SCD. Charts were reviewed for demographics, insurance at last known visit, SCD genotype, use disease-modifying therapy (hydroxyurea or transfusion therapy) at last pediatric visit, location of pediatric SCD clinic, and transition status. Based on these characteristics, analyses were done to determine if there were differences in genotype, pre-transition treatment, or demographics between those who had become lost-to-follow-up and those who had successfully transitioned (defined as coming to an appointment with an adult hematologist at UAB or with a community hematologist-oncologist).
Results
The total sample included 544 individuals. Of this group: 234 were lost-to-follow-up, 189 transitioned to adult care, 36 moved, and 15 died before 18 years of age. Seventy patients have not yet transitioned and thus, were excluded from study. Sixty-eight percent of patients (n=127) that successfully transitioned to an adult provider had their last pediatric visit at the Birmingham clinic, compared to only 32% (n=61) that were followed in outreach (non-Birmingham clinics) (P<.01). Patients were also more likely to have successfully transitioned if they had sickle cell anemia versus those with hbSC/hbSß+ (p<.01) and if they were receiving hydroxyurea or chronic transfusion therapy ( p<.01).
Conclusion
Our results suggest that geography, genotype, and the use of disease-modifying therapy are strong predictors for a successful transition to adult care in SCD. Novel strategies to improve transition of care for patients living outside of Birmingham are clearly needed. Potential care improvements include telehealth and developing relationships with local primary care providers or developing affiliate clinics in more rural areas. People with hbSC and hbSß+ disease (compared to hbSS) often have less severe disease complications as children. It may be necessary to enhance engagement in care for these patients to ensure they do not become lost to follow-up. Further, increasing early discussion about the necessity of lifespan care may help patients and families plan for adult care at earlier ages. Beyond our institution, this information could serve as a potential framework for evidence-based guidelines in SCD Transition Care.
Keyword(s): Adolescents, Pediatric, Sickle cell disease, Young adult
Abstract: EP1217
Type: E-Poster Presentation
Session title: Sickle cell disease
Background
From newborn screening to vaccinations to disease-modifying therapies, the evolution of medicine has potentiated the livelihood of children and adolescents with Sickle Cell Disease (SCD). Over 90% of children with SCD now survive into adulthood in high resource countries—however, mortality rates have not improved in young adults. Challenges in continuing care emerge as they transition from a heavily contiguous pediatric healthcare model to an increasingly self-reliant adult healthcare model.
Aims
The goal of this study is to identify potential facilitators and barriers to a successful transition in care.
Methods
The Comprehensive Sickle Cell Center at UAB serves a large area of Alabama, including many surrounding cities. The pediatric program is housed in Birmingham, AL but has outreach clinics in Montgomery, Opelika, and Tuscaloosa, AL. It provides care for approximately 900 children with SCD. The adult program only has one clinic located in Birmingham, AL. With IRB approval, we performed a retrospective medical chart review of all individuals with SCD (all genotypes) aged 18-24 (as of January 31, 2019) who were previously treated by hematology at Children’s of Alabama. To be included, patients must have been seen at least twice prior to turning 18 years old and have confirmed SCD. Charts were reviewed for demographics, insurance at last known visit, SCD genotype, use disease-modifying therapy (hydroxyurea or transfusion therapy) at last pediatric visit, location of pediatric SCD clinic, and transition status. Based on these characteristics, analyses were done to determine if there were differences in genotype, pre-transition treatment, or demographics between those who had become lost-to-follow-up and those who had successfully transitioned (defined as coming to an appointment with an adult hematologist at UAB or with a community hematologist-oncologist).
Results
The total sample included 544 individuals. Of this group: 234 were lost-to-follow-up, 189 transitioned to adult care, 36 moved, and 15 died before 18 years of age. Seventy patients have not yet transitioned and thus, were excluded from study. Sixty-eight percent of patients (n=127) that successfully transitioned to an adult provider had their last pediatric visit at the Birmingham clinic, compared to only 32% (n=61) that were followed in outreach (non-Birmingham clinics) (P<.01). Patients were also more likely to have successfully transitioned if they had sickle cell anemia versus those with hbSC/hbSß+ (p<.01) and if they were receiving hydroxyurea or chronic transfusion therapy ( p<.01).
Conclusion
Our results suggest that geography, genotype, and the use of disease-modifying therapy are strong predictors for a successful transition to adult care in SCD. Novel strategies to improve transition of care for patients living outside of Birmingham are clearly needed. Potential care improvements include telehealth and developing relationships with local primary care providers or developing affiliate clinics in more rural areas. People with hbSC and hbSß+ disease (compared to hbSS) often have less severe disease complications as children. It may be necessary to enhance engagement in care for these patients to ensure they do not become lost to follow-up. Further, increasing early discussion about the necessity of lifespan care may help patients and families plan for adult care at earlier ages. Beyond our institution, this information could serve as a potential framework for evidence-based guidelines in SCD Transition Care.
Keyword(s): Adolescents, Pediatric, Sickle cell disease, Young adult