scholarly journals Comparison of the Impact of a mHealth Self-Management Intervention on Adolescents Versus Young Adults with Sickle Cell Disease

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2995-2995
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Alyssa M Schlenz ◽  
Kenneth Ruggiero ◽  
...  
Keyword(s):  
Young Adults ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Adolescents And Young Adults ◽  
Pain Interference ◽  
Self Management ◽  
Cell Disease ◽  
Post Intervention ◽  
Advisory Committees ◽  
Transition Readiness

Abstract Introduction: Pain and other symptoms of sickle cell disease (SCD) begin in childhood and contribute to poorer quality of life. Complications, risk of death, and symptom burden increase during transition from adolescence to adulthood; self-management is critical for transition readiness and symptom improvement. A mHealth self-management intervention for children/adolescents with SCD and their caregivers (Voice Crisis Alert V2) was adapted to facilitate transition from parent-led management to adolescent self-management. This abstract presents the preliminary impacts of the intervention on symptoms and QOL outcomes and compares findings between adolescents and young adults. Methods: The names and features of the Voice Crisis Alert V2 application (app) components are in Table 1. Targeted sample sizes were 30 dyads of adolescents with SCD ages 11 - 17 and the parent/caregiver and 15 young adults with SCD ages 18 - 25 who had not transitioned to adult care. Data sources included app use, and surveys at baseline, mid-intervention, end-of-intervention, and post-intervention. Adolescent surveys included: the PROMIS SF for anxiety, depressive symptoms, fatigue, pain interference, and pain intensity; the PedsQL with Sickle Cell Disease Module (SCDM) for health-related quality of life (HRQOL); the Sickle Cell Self-Efficacy Scale; and the STARx for transition readiness. Young adult surveys included: the PROMIS SF for anxiety, depression, fatigue, pain interference, pain intensity, and sleep disturbance; the ASCQ-Me for HRQOL; the Sickle Cell Self-Efficacy Scale; and the STARx for transition readiness. Analysis was conducted using descriptive statistics and Spearman's rho. Independent variables were length of time using the app and frequency of app use total and by component. Dependent variables were pre-post intervention differences in scores for outcomes that were key targets of the intervention. Results are reported with 95% CI. Results: Among both groups (adolescents and young adults), pre-post intervention differences in scores indicated improvement in nearly all symptom outcomes; greatest improvement was in pain interference for both groups and fatigue in young adults. Improvements in HRQOL were also noted in nearly all domains for both groups. Adolescents had greatest improvement in school functioning, total SCDM score and subscales for pain and hurt, pain impact, worry I, emotions, and communication II, and young adults in emotional impact, social impact, and pain impact. No to slight improvements in self-efficacy and transition readiness were observed in both groups. Most correlations across groups had CIs that crossed zero, which suggests associations observed in the population may be positive or negative. Twelve correlations did not cross zero in the adolescent sample compared with 1 in the young adult sample, though 5 additional strong correlations were noted. Of the strongest correlations in young adults, all but 1 indicated more time spent using the app was associated with greater improvement in scores. Of the strongest correlations in adolescents, 5 indicated more frequent app use was associated with greater improvement in scores, 3 indicated more frequent app use was associated with less substantial improvement in scores, 3 indicated more time spent using the app was associated with greater improvement in scores, and 1 indicated more time spent using the app was associated with less substantial improvement in scores. Conclusions: Similarities in pre-post intervention differences in scores suggest consistency in intervention impact on outcomes between adolescents and young adults who have not transitioned to adult care. The intervention may be particularly useful for improving pain interference, emotional impact/functioning, school or social impact/functioning, and pain impact/functioning. Little improvement was noted in transition readiness scores in either group, suggesting the intervention may need to include more robust strategies for transition preparation. There were few consistencies between groups in correlation findings; greater improvement in scores may be attributed to more time spent on app activities in young adults compared with greater frequency of use in adolescents. Future efficacy testing with a larger sample is warranted, to include exploration of associations between app use and outcomes across subgroups with varying characteristics. Figure 1 Figure 1. Disclosures Kanter: Fulcrum Therapeutics, Inc.: Consultancy; Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Forma: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees; Beam: Honoraria, Membership on an entity's Board of Directors or advisory committees; Sanofi: Honoraria, Membership on an entity's Board of Directors or advisory committees; Graphite Bio: Consultancy; GuidePoint Global: Honoraria; Fulcrum Tx: Consultancy.

scholarly journals Assessment of Impact of a mHealth Self-Management Intervention for Children with Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 11-12
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Kenneth Ruggiero ◽  
Teresa Kelechi
Keyword(s):  
Sickle Cell Disease ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Management Strategies ◽  
Pain Interference ◽  
Self Management ◽  
Cell Disease ◽  
Post Intervention ◽  
Advisory Committees ◽  
Crisis Care

Introduction: Children with sickle cell disease (SCD) frequently experience pain beginning in early childhood progressing throughout the lifespan. SCD-related pain during childhood is associated with decreased physical, psychological, social, and quality of life (QOL) outcomes. As a chronic, multi-organ condition, treatment for SCD may require complicated preventive health and acute treatment regimens necessitating development of self-management strategies for children and their families. mHealth may be an ideal mechanism for implementation of self-management strategies. A mHealth self-management intervention was developed with an end-user-based approach (Voice Crisis Alert V2) and guided by the Pediatric Self-Management model. Initial feasibility testing was conducted. This abstract describes preliminary impacts of the Voice Crisis Alert V2 intervention on symptoms and QOL. Methods: The characteristics and names of application (app) components such as "Crisis Care" and "I'm in Pain" are outlined in Table 1. Targeted sample size was 60 dyads of children with SCD up to age 18 and the parent/caregiver. For assessment of impact, data sources included app use, child and parent/caregiver surveys at baseline, mid-intervention, end-of intervention and post-intervention. Survey instruments included the PROMIS SF for anxiety, fatigue, depressive symptoms, pain interference, pain intensity and sleep disturbance, and the PedsQL and Sickle Cell Disease Module (SCDM) for health-related quality of life (HRQOL). Data analysis was conducted using descriptive statistics, t-tests, Wilcoxon Signed Rank test, and Spearman's rho. Independent variables were number of times and length of time (minutes) using the app and individual app components. Dependent variables were pre-post differences in scores for total PedQL, school functioning, total SCDM, and subscales: pain and hurt, pain intensity, pain management, and treatments. Results are reported with 95% CIs. Results: The most substantial pre- to post-intervention differences in symptoms and QOL scores were noted in children ages 8 - 17. Pre-post-intervention differences in scores demonstrated improvement for all symptoms outcomes except anxiety, with clinically significant improvements in depressive symptoms, fatigue, and pain interference. Improvement in total scores and all subscale scores on the PedsQL and SCDM instruments were also noted from pre- to post-intervention. The majority of correlations had CIs that crossed zero, indicating either negative or positive associations may be observed in the population. Thus, overall, frequency and length of app use was not correlated with degree of improvement in outcomes. Negative correlations were observed between the number of times the Crisis Care component was used and treatment score (rs = -.46, 95% CI [-.75, -.00]), the number of minutes the Crisis Care component was used and the treatment score (rs = -.54, 95% CI [-.80, -.11]), and the number of minutes the Crisis Care component was used and the total SCDM score (rs = -.48, 95% CI [-.77, -.03]). These correlations suggest more frequent and longer use of the Crisis Care component was associated with less substantial improvement in SCDM total score and treatments score. Conclusions: Greater improvement in scores for children ages 8 - 17 compared to children less than 8 years suggests the intervention may be particularly useful in older children with SCD. Changes in scores from pre- to post-intervention and their CIs suggest intervention use may lead to improvement in the following domains: fatigue, pain interference, HRQOL, physical functioning, social functioning, pain and hurt, pain impact, pain management, and treatments. While improvements in scores from pre- to post-intervention were noted in nearly all areas, few meaningful correlations were observed between app use and differences in outcome scores. Improvement in symptoms and QOL outcomes may be attributable to individual characteristics, such as disease severity, or the amount and type of app use required to develop self-management skills may be individualized. Sample sizes were small and future efficacy testing is warranted with a larger sample. Disclosures Kanter: AGIOS: Membership on an entity's Board of Directors or advisory committees; BEAM: Membership on an entity's Board of Directors or advisory committees; NHLBI Sickle Cell Advisory Board: Membership on an entity's Board of Directors or advisory committees; SCDAA Medical and Research Advisory Board: Membership on an entity's Board of Directors or advisory committees; Cowen: Honoraria; Wells Fargo: Honoraria; bluebird bio, inc: Consultancy, Honoraria; Novartis: Consultancy; Sanofi: Consultancy; Medscape: Honoraria; Guidepoint Global: Honoraria; GLG: Honoraria; Jeffries: Honoraria.

scholarly journals Measuring Transition Readiness in Adolescents and Young Adults with Sickle Cell Disease Using the Transition Readiness Assessment Questionnaire

2021 ◽  
Author(s):  
Anjali Oberoi ◽  
Alyssa Patterson ◽  
Amy Sobota
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Medical Center ◽  
Self Report ◽  
Adolescents And Young Adults ◽  
Cell Disease ◽  
Readiness Assessment ◽  
Transition Readiness ◽  
Assessment Questionnaire

Background/Objectives: Adolescents and young adults (AYA) with sickle cell disease (SCD) face challenges related to the disease and its treatment. The Transition Readiness Assessment Questionnaire (TRAQ) is a self-report tool for assessing transition readiness for youth with special health care needs (YSHCN), including SCD. This study uses the TRAQ to understand transition readiness in patients with SCD treated at the Boston Medical Center, evaluates associations between TRAQ scores and transition outcomes (e.g., EDr, EDu), and compares TRAQ scores in this population with other YSHCN. Methods: We reviewed electronic medical records of AYA with SCD who completed the TRAQ in the pediatric hematology clinic between January 1, 2019, and March 1, 2020, and categorized healthcare encounters to calculate EDu and EDr. We used t-tests and ANOVA models to analyze mean TRAQ scores, sex, age, genotype, EDu, and EDr. Results: The sample was 45 AYA patients with SCD between 13 and 22 years old. The mean TRAQ score for the overall patient sample was 3.67. Mean TRAQ scores did not significantly vary by sex or genotype but did significantly increase with age. TRAQ scores were lower in the SCD population than in other YSHCN. TRAQ scores did not correlate to EDu or EDr. Conclusions: AYA patients with SCD have lower transition readiness than other populations of YSHCN. The age of 18 may not be the most reliable attribute of readiness, though older patients do have higher readiness. The relationship between TRAQ scores, EDr, and EDu is not clear and requires further evaluation.

scholarly journals Implementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease

2019 ◽  
Vol 66 (7) ◽  
pp. e27722 ◽  
Author(s):  
Cecelia L. Calhoun ◽  
Regina A. Abel ◽  
Hai Ahn Pham ◽  
Shomari Thompson ◽  
Allison A. King
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Educational Intervention ◽  
Self Management ◽  
Cell Disease ◽  
Transition Readiness

Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease

2015 ◽  
Vol 30 (5) ◽  
pp. 788-796 ◽  
Author(s):  
Barbara Speller-Brown ◽  
Katherine Patterson Kelly ◽  
Brigit VanGraafeiland ◽  
Suzanne Feetham ◽  
Anne Sill ◽  
...  
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Adolescents And Young Adults ◽  
Correlational Study ◽  
Cell Disease ◽  
Transition Readiness

scholarly journals Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3536-3536
Author(s):  
Cecelia Calhoun ◽  
Regina Abel ◽  
Hai Anh Pham ◽  
Shomari Thompson ◽  
Allison A King
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Psychosocial Development ◽  
Sexual Development ◽  
Independent Living ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness

Abstract Background: The transition from the pediatric setting to adult care is a challenge for many adolescents with chronic disease. Patients with sickle cell disease (SCD) represent a unique cohort as the timing of psychosocial development of adolescence often coincides with worsening end organ damage. Previously, we used the Adolescent Autonomy Checklist (AAC) modified to include SCD specific tasks that patients with SCD need to practice in order to transition to adult healthcare and independent living. This study sought to use the AAC to measure the effects of skill based educational handouts on improving self-management and transition readiness in adolescents with SCD. Methods: This was a single center, retrospective study approved by the Washington University Institutional Review Board. Inclusion criteria were patients with SCD, age 13-21 years, and completion of pre and post assessments. As standard care, patients from a pediatric hematology clinic completed the AAC-SCD. The AAC-SCD assesses skill level in twelve domains (Table). The tool includes 100 items, and users check "can do already" or "needs practice" for each item. After review with the coordinator, participants were given skill-based handouts based on up to five noted deficits. Patients completed the AAC-SCD at the subsequent clinic visit. In addition to baseline and follow up AAC-SCD data, medical and demographic data were collected via chart abstraction. All data were entered into SPSS for statistical analysis, including descriptives, paired sample T-tests, and bivariate Pearson's correlations. Results: A total of 61 patients completed baseline and follow up. Of those participants, 49.2% were female. The mean age was 15.4 (+ 2.2) years. The genotypic distribution was as follows: 67.2% HbSS, 19.7% HbSC, 3.3% HbS-beta-thal+ and 9.8% HbS-beta-thal0. The majority of patients received healthcare coverage via Medicaid (52.5%), private insurance (45.6%) and 1.6% had no insurance coverage. Twenty-five patients (42.0 %) had a history of stroke or silent cerebral infarct and 34 (55.7%) were currently taking or were previously prescribed hydroxyurea. Formal academic support (IEP or 504 Plan) was reported for 20 (32.8%) of patients. At baseline, patients needed the most help with skills in the kitchen, housekeeping, personal care and leisure. Statistically significant improvements (p< 0.05) occurred in skills related to laundry, housekeeping, healthcare, sexual development and living arrangements. Modest sized and statistically significant correlation between the receipt of the educational handouts and decreased number of items marked "needs help" occurred in the areas of money management (r=-0.27, p=0.044), vocational skills (r=-0.27, p=0.046;) and laundry (r=0.32, p=0.015). A post hoc analysis by age groups 13-15 (n= 34),16-18 (n=24) and 19-21 (n=3) showed a decreased amount of items marked "needs help" in the areas of sexual development for both 13-15 year olds (r=0.42, p=0.024) and 16-18 year olds (r=0.93, p=0.001) as well. Conclusion: Transition skills improved over time among adolescents with SCD. While we cannot say for certain if gains in knowledge occur with age as development progresses or if a formal transition program can be credited, providing educational materials on transition related skills within a clinic setting was associated with significant improvements in three of the domains. Our preliminary data offers insight into what skill deficits may be most amenable to educational interventions based on age group. As is the case with medical management, the development of a multimodal intervention is needed to prepare adolescents with SCD to transition to adult care and independent living. Clinic based education is a simple intervention that could be one component of future approaches to transition. Disclosures No relevant conflicts of interest to declare.

scholarly journals Clinical and Biomarker Predictors for Avascular Necrosis in Sickle Cell Disease

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 3091-3091
Author(s):  
Michael Rabaza ◽  
Maria Armila Ruiz ◽  
Liana Posch ◽  
Faiz Ahmed Hussain ◽  
Franklin Njoku ◽  
...  
Keyword(s):  
Risk Factors ◽  
Sickle Cell Disease ◽  
Board Of Directors ◽  
Avascular Necrosis ◽  
Sickle Cell ◽  
Research Funding ◽  
Medical Attention ◽  
Cell Disease ◽  
Advisory Committees ◽  
Early Management

Abstract Introduction Sickle cell disease (SCD) affects 1 in 365 African Americans and approximately 25 million people world-wide. A common skeletal system complication is avascular necrosis (AVN), which can cause substantial pain and a reduced quality of life. While early management of AVN is focused on increasing range of motion with physical therapy and pain relief, there are no clear predictors for who is more likely to develop AVN and earlier institution of these preventive measure could help decrease disease progression. Vascular endothelial growth factor (VEGF) is a biomarker of endothelial injury and may indicate reduced vascular supply to the femoral or humeral head. Here we describe potential risk factors and biologic pathways for AVN in SCD, as understanding these may lead to improvements in future monitoring, early detection, and early intervention practices. Methods We investigated clinical and laboratory risk factors associated with AVN in a cohort of 435 SCD patients from our center. Blood samples, clinical, and laboratory data were collected at the time of enrollment during a clinic visit. Genotyping for alpha thalassemia was performed by PCR and the serum concentration of VEGF was measured by ELISA. AVN status was confirmed by review of the medical record and available imaging. We conducted a cross-sectional analysis comparing categorical and linear variables by AVN status using the chi-square and Kruskal-Wallis test, respectively. The independent association of the clinical and laboratory variables with AVN status was determined by logistic regression analysis. The initial model included variables with a P-value &lt; 0.1 on univariate analysis and the final model was ascertained by stepwise forward and backward selection. Median values and interquartile range (IQR) are provided. Results The median age of the cohort was 32 (IQR, 24 - 43) years, 57% (250/435) were female, and 46% (198/435) were on hydroxyurea. AVN was observed in 34% (149/435) of SCD patients. SCD patients with AVN were older, had more frequent vaso-occlusive crises requiring medical attention, and had a higher body mass index (Table I) (P ≤ 0.002). We measured VEGF in 241 of the SCD patients with serum samples available at the time of enrolment. Serum VEGF concentrations trended higher in SCD patients with versus without AVN (420 vs. 359 pg/mL, respectively; P = 0.078). In the multivariate analysis model, AVN was independently associated with increased number of vaso-occlusive crises (OR 1.1, 95% CI: 1.0 - 1.14; P = 0.02), AST concentration (natural log OR 0.5, 95% CI: 0.2 - 0.9; P = 0.03), VEGF concentration (natural log OR 1.4, 95% CI: 1.0 - 1.9; P = 0.047), and tobacco use (OR 1.9, 95% CI: 0.9 - 3.7; P = 0.078). Discussion In conclusion, we demonstrate a high prevalence of AVN in an adult cohort of SCD patients. The presence of AVN was independently associated with a greater frequency of vaso-occlusive pain episodes, which may demonstrate a shared pathophysiology between AVN and vaso-occlusion that merits further investigation. We demonstrate that serum VEGF concentrations are higher in SCD patients with AVN and may be a clinical tool to identify those at high-risk and for earlier intervention for this complication. Figure 1 Figure 1. Disclosures Gordeuk: Modus Therapeutics: Consultancy; Novartis: Research Funding; Incyte: Research Funding; Emmaus: Consultancy, Research Funding; Global Blood Therapeutics: Consultancy, Research Funding; CSL Behring: Consultancy. Saraf: Pfizer: Research Funding; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees, Research Funding; Novartis: Membership on an entity's Board of Directors or advisory committees, Research Funding.

scholarly journals 10-Year Mortality in Patients with Sickle Cell Disease from a Large Population-Based Cohort

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 56-56
Author(s):  
Kristina Lai ◽  
Marianne McPherson Yee ◽  
Beatrice Gee ◽  
Maa-Ohui Quarmyne ◽  
Ross M. Fasano ◽  
...  
Keyword(s):  
Mortality Rate ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Bacterial Infections ◽  
Mortality Rates ◽  
Population Based ◽  
Cell Disease ◽  
Adult Care ◽  
Advisory Committees ◽  
Hb S

Background Mortality rates and causes of death in children with sickle cell disease (SCD) have changed significantly over the past several decades. With ongoing improvements in standards of care, modern mortality estimates must be updated. Children's Healthcare of Atlanta (CHOA) houses one of the largest pediatric SCD programs in the country. This analysis reviews mortality in children with SCD who were treated at CHOA between June 2010-June 2020. Methods We reviewed the CHOA's Sickle Cell Clinical Database (SCCD) for deceased patients. Demographics, SCD genotype, date and age at death, healthcare utilization, hydroxyurea (HU) use, chronic transfusion therapy (CTT), and bone marrow transplant (BMT) were obtained from the SCCD. Cause of death and history of significant comorbidities were abstracted from the medical record. Mortality rates were calculated using person-time for all CHOA SCD patients and population-based mortality was obtained from CDC WONDER Online Database. Results A total of 3,698 patients with SCD were seen at CHOA from June 2010-June 2020 and accounted for 19,998 person-years. Of the 46 patients who died during that time, all but 1 patient had been seen in the CHOA Sickle Cell Outpatient Clinic at least once. That patient received SCD care at a different institution, died from complications of a non-SCD related disease following transfer to CHOA, and was excluded from analysis. Of the 45 remaining patients (178 person-years), the majority were sickle cell anemia genotypes (n=37, 82%; Hb SS or Hb S β0 thalassemia), followed by Hb SC (n=5, 11.1%) and Hb S β+ thalassemia (n=3, 6.7%); 53% (n=24) were female. The average age at death was 12.8 years (1.0-22.8 years). Twenty-one (46.7%) patients had ever been treated with HU and 11 (24.4%) were currently on HU at the time of last contact (either death or last CHOA encounter). Eleven (24.4%) patients had ever been treated with CTT, and 3 (8.9%) were being treated with CTT at time of last contact. In comparison, during the same time period an average of 58% and 12% of the overall CHOA SCD population were being treated with HU and CTT, respectively. Forty-one patients had at least 1 SCD-related encounter at CHOA within 12 months prior to death. For the 4 patients who had not been seen at CHOA within 12 months, the average time since last contact was 1.72 years (1.03 - 2.7 years). Eighty percent (n=8) of the 10 patients who died at age &gt;19 had either recently transitioned to adult care or had documentation of a transition plan. During this 10-year period, the crude death rate was 2.3 per 1,000 person-years. The majority of deaths (62%, n=28) were attributable SCD-related causes and corresponded to a cause-specific mortality rate of 1.40 per 1,000 person-years. The remaining 38% (n=17) of deaths were caused by complex non-SCD comorbidities or accidental trauma and corresponded to a non-SCD related mortality rate of 0.85 per 1,000 person-years. In comparison, the mortality rate for African American persons age &lt;22 in Georgia from 2009-2018 was 0.9 per 1,000 person-years. Of the 28 patients who died due to an SCD-related cause: 12 (27%) experienced an acute illness related to SCD, 4 (9%) succumbed to acute bacterial infections, 3 (7%) died from complications of SCD treatment (1 procedure-related, 2 drug-induced hemolytic anemia), and 1 (2%) died from complications of BMT. Nine (20%) had either recently transitioned to adult care or were lost to follow-up and had no significant non-SCD comorbidities, therefore cause of death was unknown. Of the 17 non-SCD related deaths, 16 (36%) were due to complex non-SCD comorbidities (including cancers, autoimmune disorders, and congenital heart disease) and 1 (2%) from an accidental trauma. Conclusions To our knowledge, this is the largest and most recent study of mortality in patients with SCD from a single institution. Overall, the demographics of deceased patients were similar to those of the CHOA SCD population as a whole. This cohort indicates that trends in mortality of children with SCD have largely shifted away from bacterial infections to other complications of SCD, subsequent treatments, or comorbidities. Our data confirm that patients nearing transition to adult care are at high risk of mortality. This study is limited to deaths that are known to the CHOA system, so future analyses will expand this cohort to include data from death certificates and CDC's National Death Index. Disclosures Lane: FORMA Therapeutics: Membership on an entity's Board of Directors or advisory committees; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees.

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