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Article ; Online: Bridging the implementation gap in medication adherence. If you build it, will they come?

Hankins, Jane S / Klesges, Lisa M

2021 Volume 196, Issue 1, Page(s) 17–18

MeSH term(s)	Humans ; Medication Adherence
Language	English
Publishing date	2021-11-16
Publishing country	England
Document type	Journal Article ; Comment
ZDB-ID	80077-6
ISSN	1365-2141 ; 0007-1048
ISSN (online)	1365-2141
ISSN	0007-1048
DOI	10.1111/bjh.17953
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Article ; Online: Comparative pharmacovigilance assessment of adverse events associated with the use of hydroxyurea, L-glutamine, voxelotor, and crizanlizumab in sickle cell disease.

Chen, Ming / Hankins, Jane S / Zhang, Min / Ataga, Kenneth I

American journal of hematology

2023 Volume 99, Issue 2, Page(s) E37–E41

Abstract: Using disproportionality analysis, this study compared the adverse events (AEs) associated with the use of the new agents (e.g., L-glutamine, voxelotor, and crizanlizumab) to the commonly used medication, hydroxyurea, in sickle cell disease. We found ... ...

Abstract	Using disproportionality analysis, this study compared the adverse events (AEs) associated with the use of the new agents (e.g., L-glutamine, voxelotor, and crizanlizumab) to the commonly used medication, hydroxyurea, in sickle cell disease. We found that the most frequent drug-related AEs observed in this real-world study were consistent with those in the HOPE (voxelotor) and SUSTAIN (crizanlizumab) trials, but the rates of AEs were lower. Our study demonstrates that the most common AEs and symptoms of an increased risk associated with the individual drugs varied by treatment. Disproportionate reporting signals of drug-related AEs may also capture information that is independent of subjective measures of patient-reported symptoms. Our study highlights the important need for facilitating patient-physician communication in routine clinical care to understand patient-reported symptoms.
MeSH term(s)	Humans ; Hydroxyurea/adverse effects ; Glutamine ; Pharmacovigilance ; Anemia, Sickle Cell/drug therapy ; Anemia, Sickle Cell/complications ; Benzaldehydes ; Pyrazines ; Pyrazoles ; Antibodies, Monoclonal, Humanized
Chemical Substances	Hydroxyurea (X6Q56QN5QC) ; crizanlizumab (L7451S9126) ; voxelotor (3ZO554A4Q8) ; Glutamine (0RH81L854J) ; Benzaldehydes ; Pyrazines ; Pyrazoles ; Antibodies, Monoclonal, Humanized
Language	English
Publishing date	2023-11-11
Publishing country	United States
Document type	Letter
ZDB-ID	196767-8
ISSN	1096-8652 ; 0361-8609
ISSN (online)	1096-8652
ISSN	0361-8609
DOI	10.1002/ajh.27153
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Article ; Online: Social determinants of health: the next frontier for improving care and outcomes in sickle cell disease.

Porter, Jerlym S / Heitzer, Andrew M / Crosby, Lori E / Hankins, Jane S

The Lancet. Haematology

2023 Volume 10, Issue 8, Page(s) e571–e573

MeSH term(s)	Humans ; Social Determinants of Health ; Quality Improvement ; Anemia, Sickle Cell/epidemiology ; Anemia, Sickle Cell/therapy
Language	English
Publishing date	2023-07-11
Publishing country	England
Document type	Journal Article ; Comment
ISSN	2352-3026
ISSN (online)	2352-3026
DOI	10.1016/S2352-3026(23)00185-0
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Article ; Online: Tackling adherence in sickle cell disease with mHealth.

Hankins, Jane S / Shah, Nirmish

The Lancet. Haematology

2020 Volume 7, Issue 10, Page(s) e713–e714

MeSH term(s)	Anemia, Sickle Cell/drug therapy ; Antisickling Agents/therapeutic use ; Humans ; Hydroxyurea/therapeutic use ; Mobile Applications ; Patient Compliance ; Smartphone ; Telemedicine
Chemical Substances	Antisickling Agents ; Hydroxyurea (X6Q56QN5QC)
Language	English
Publishing date	2020-12-04
Publishing country	England
Document type	Journal Article
ISSN	2352-3026
ISSN (online)	2352-3026
DOI	10.1016/S2352-3026(20)30299-4
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Article ; Online: Venous thromboembolism in pediatric patients with sickle cell disease: A north American survey on experience and management approaches of pediatric hematologists.

Betensky, Marisol / Kumar, Riten / Hankins, Jane S / Goldenberg, Neil A

Thrombosis research

2022 Volume 211, Page(s) 133–139

Abstract: Background: There is a lack of pediatric-specific data to guide recommendations for prevention and management of venous thromboembolism (VTE) in sickle cell disease (SCD). Experience and expert opinion in this area have not been reported.: Objectives!# ...

Abstract	Background: There is a lack of pediatric-specific data to guide recommendations for prevention and management of venous thromboembolism (VTE) in sickle cell disease (SCD). Experience and expert opinion in this area have not been reported. Objectives: To characterize the management practices of pediatric hematologists in SCD-associated VTE. We hypothesized there is substantial variability in duration of therapy and prophylaxis preferences. Methods: Electronic survey among pediatric hematologists members of three international subspecialty societies/consortia. Results: Among 52 complete respondents (response rate, 42%), 47% of physicians reported treating 1-2 patients with SCD-associated VTE, while 20% treated 3-5 patients during the preceding 12 months. Most respondents (86%) estimated the risk of VTE recurrence at <5%. The vast majority (98%) of respondents prescribed anticoagulation for symptomatic VTE treatment. Duration of therapy varied by VTE type, 95% reported prescribing 6 weeks-3 months for provoked DVT, while 60% reported prescribing a similar duration for provoked PE with the remaining 40% reporting treating PE for longer duration. There was notable variation in the treatment practices for asymptomatic or unprovoked VTE. Lastly, half of physicians indicated to be "somewhat" (40%) and "not at all" (10%) confident making decisions regarding the duration and intensity of prophylactic anticoagulation. Conclusions: We identified significant variability in practice, a lower than expected perceived risk of recurrence, and uncertainty regarding VTE prophylaxis strategies in pediatric SCD. Cooperative multicenter studies are needed to generate evidence for future treatment guidelines development, and to identify opportunities for interventions aimed at managing and preventing VTE in pediatric SCD.
MeSH term(s)	Anemia, Sickle Cell/complications ; Anticoagulants/therapeutic use ; Child ; Humans ; North America ; Physicians ; Risk Factors ; Surveys and Questionnaires ; Venous Thromboembolism/drug therapy ; Venous Thromboembolism/etiology ; Venous Thromboembolism/prevention & control
Chemical Substances	Anticoagulants
Language	English
Publishing date	2022-02-07
Publishing country	United States
Document type	Journal Article
ZDB-ID	121852-9
ISSN	1879-2472 ; 0049-3848
ISSN (online)	1879-2472
ISSN	0049-3848
DOI	10.1016/j.thromres.2022.01.028
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Article ; Online: Empirically derived profiles of neurocognitive functioning in youth and young adults with sickle cell disease.

Ellison, Vinkrya / Berlin, Kristoffer S / Longoria, Jennifer / Potter, Brian / Raches, Darcy / Hankins, Jane S / Takemoto, Clifford / Heitzer, Andrew M

Journal of pediatric psychology

2024

Abstract: Objective: Sickle cell disease (SCD) is an inherited blood disorder associated with neurocognitive deficits. In contrast to variable-centered approaches, no known research has utilized person-centered strategies to identify multidimensional patterns of ... ...

Abstract	Objective: Sickle cell disease (SCD) is an inherited blood disorder associated with neurocognitive deficits. In contrast to variable-centered approaches, no known research has utilized person-centered strategies to identify multidimensional patterns of neurocognitive functioning of an individual with SCD. The purpose of the present study was to create empirically derived profiles and identify predictors of neurocognitive functioning subgroups among youth and young adults with SCD. Methods: Individuals with SCD (N = 393, mean age 14.05 years, age range 8-24, 50.4% female/49.6% male) completed neurocognitive assessments. Latent profile analysis derived subgroups/classes of neurocognitive functioning and determined relations with demographic and medical variables. Results: Three latent classes emerged: average functioning (n = 102, 27%), low average functioning (n = 225, 60%), and exceptionally low functioning (n = 46, 12%). Older age was associated with membership in the low average and exceptionally low functioning groups (relative to the average group). Being prescribed hydroxyurea was associated with membership in the average functioning group (relative to the low average group) and absence of hydroxyurea use was associated with membership in the exceptionally low group (relative to the low average group). Lower social vulnerability was associated with membership in the average functioning group compared to the low average and exceptionally low groups. Conclusions: Clinicians can help reduce disparities in cognitive development for individuals with SCD by promoting early treatment with hydroxyurea and implementing methods to reduce social vulnerabilities that can interfere with access to evidence-based care.
Language	English
Publishing date	2024-04-16
Publishing country	United States
Document type	Journal Article
ZDB-ID	625329-5
ISSN	1465-735X ; 0146-8693
ISSN (online)	1465-735X
ISSN	0146-8693
DOI	10.1093/jpepsy/jsae029
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Article: Awareness, access, and communication: provider perspectives on early intervention services for children with sickle cell disease.

Heitzer, Andrew M / MacArthur, Erin / Tamboli, Mollie / Wilson, Ashley / Hankins, Jane S / Hoyt, Catherine R

Frontiers in pediatrics

2024 Volume 12, Page(s) 1366522

Abstract: Purpose: This study aimed to identify determinants influencing the utilization of early intervention services among young children with sickle cell disease (SCD) based on perspectives from medical and early intervention providers.: Design and methods!# ...

Abstract	Purpose: This study aimed to identify determinants influencing the utilization of early intervention services among young children with sickle cell disease (SCD) based on perspectives from medical and early intervention providers. Design and methods: Early intervention and medical providers from the catchment area surrounding St. Jude Children's Research Hospital and Washington University were recruited (20 total providers). Interviews were completed over the phone and audio recorded. All interviews were transcribed verbatim, coded, and analyzed using inductive thematic analysis. Results: Three overarching themes were identified from both groups: Awareness (e.g., lack of awareness about the EI system and SCD), Access (e.g., difficulties accessing services), and Communication (e.g., limited communication between medical and early intervention providers, and between providers and families). Although these three themes were shared by medical and early intervention providers, the differing perspectives of each produced subthemes unique to the two professional fields. Conclusions: Early intervention services can limit the neurodevelopmental deficits experienced by young children with SCD; however, most children with SCD do not receive these services. The perspectives of early intervention and medical providers highlight several potential solutions to increase early intervention utilization among young children with SCD.
Language	English
Publishing date	2024-03-25
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2711999-3
ISSN	2296-2360
ISSN	2296-2360
DOI	10.3389/fped.2024.1366522
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Article ; Online: Health-care transition services for sickle cell disease in Brazil.

Hankins, Jane S / Lobo, Clarisse / Braga, Josefina A P / Aurora, Tarun / Pimenta, Kelly / Figueiredo, Maria Stella / Baumann, Ana A

The Lancet. Haematology

2024 Volume 11, Issue 3, Page(s) e184–e185

MeSH term(s)	Humans ; Patient Transfer ; Brazil/epidemiology ; Anemia, Sickle Cell/epidemiology ; Anemia, Sickle Cell/therapy ; Health Services
Language	English
Publishing date	2024-02-28
Publishing country	England
Document type	Journal Article
ISSN	2352-3026
ISSN (online)	2352-3026
DOI	10.1016/S2352-3026(24)00043-7
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Article ; Online: Longitudinal effect of disease-modifying therapy on left ventricular diastolic function in children with sickle cell anemia.

Rai, Parul / Okhomina, Victoria I / Kang, Guolian / Martinez, Hugo R / Hankins, Jane S / Joshi, Vijaya

American journal of hematology

2023 Volume 98, Issue 6, Page(s) 838–847

Abstract: Cardiac abnormalities seen in sickle cell anemia (SCA) include diastolic dysfunction, which has been shown to be associated with high morbidity and early mortality. The effect of disease-modifying therapies (DMT) on diastolic dysfunction is poorly ... ...

Abstract	Cardiac abnormalities seen in sickle cell anemia (SCA) include diastolic dysfunction, which has been shown to be associated with high morbidity and early mortality. The effect of disease-modifying therapies (DMT) on diastolic dysfunction is poorly understood. We prospectively evaluated the effects of hydroxyurea and monthly erythrocyte transfusions on diastolic function parameters over 2 years. A total of 204 subjects with HbSS or HbSβ0-thalassemia (mean age 11 ± 3.7 years), unselected for disease severity, had diastolic function assessed with surveillance echocardiograms twice, 2 years apart. During this 2-year observation period, 112 participants received DMTs (hydroxyurea, n = 72, monthly erythrocyte transfusions, n = 40), 34 initiated hydroxyurea, and 58 did not receive any DMT. The entire cohort showed an increase in left atrial volume index (LAVi) of 3.40 ± 10.86 mL/m2, p = .001 over 2 years. This increase in LAVi was independently associated with anemia, high baseline E/e' or LV dilation. Individuals not exposed to DMT were younger (mean age 8.8 ± 2.9 years), but at baseline their prevalence of abnormal diastolic parameters was similar to that of the DMT-exposed participants who were older (mean age 12 ± 3.8 years). Participants on DMTs saw no improvement in diastolic function over the study period. In fact, participants on hydroxyurea saw a possible worsening in diastolic parameters (14% increase in LAVi and ~5% decrease in septal e') but also a ~9% decrease in fetal hemoglobin (HbF) levels. Further studies are needed to evaluate if exposure to DMT for a longer duration or achieving higher HbF might be beneficial in alleviating diastolic dysfunction.
MeSH term(s)	Humans ; Child ; Adolescent ; Child, Preschool ; Hydroxyurea/therapeutic use ; Anemia, Sickle Cell/complications ; Anemia, Sickle Cell/drug therapy ; Hemoglobin, Sickle ; Erythrocyte Transfusion ; Echocardiography ; Ventricular Dysfunction, Left/complications
Chemical Substances	Hydroxyurea (X6Q56QN5QC) ; Hemoglobin, Sickle
Language	English
Publishing date	2023-03-20
Publishing country	United States
Document type	Journal Article
ZDB-ID	196767-8
ISSN	1096-8652 ; 0361-8609
ISSN (online)	1096-8652
ISSN	0361-8609
DOI	10.1002/ajh.26911
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Article ; Online: Application of validated mapping algorithms between generic PedsQL scores and utility values to individuals with sickle cell disease.

Jiao, Boshen / Hankins, Jane S / Devine, Beth / Barton, Martha / Bender, M / Basu, Anirban

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

2022 Volume 31, Issue 9, Page(s) 2729–2738

Abstract: Purpose: There is a paucity of empirically estimated health state utility (HSU) values to estimate health-related quality of life among individuals with sickle cell disease (SCD). This study aims to map the Pediatric Quality of Life Inventory generic ... ...

Abstract	Purpose: There is a paucity of empirically estimated health state utility (HSU) values to estimate health-related quality of life among individuals with sickle cell disease (SCD). This study aims to map the Pediatric Quality of Life Inventory generic core scales (PedsQL GCS) to HSUs for children and adolescents with SCD in the United States, using published algorithms, and to assess the construct validity of these HSUs against SCD-specific PedsQL scores. Methods: We used the published mapping algorithms identified in four published articles, in which the PedsQL GCS was mapped to either the EuroQol-5 Dimension 3-Level, Youth Version or the Child Health Utility 9-Dimension to obtain HSUs. We employed the algorithms to calculate HSUs for a sample of children and adolescents from the Sickle Cell Clinical Research and Intervention Program. To assess the construct validity of the mapped HSUs in SCD patients, we computed Spearman's correlation coefficient comparing the HSUs with the PedsQL SCD total score and separately with each PedsQL SCD dimension-specific score. Results: The mean mapped HSU across published algorithms was 0.792 (95% CI: 0.782-0.801). It was significantly higher among children aged 5-12 years than children aged 13-17 years. The Spearman's correlation coefficient for HSUs versus PedsQL SCD total scores was 0.64 (95% CI: 0.57-0.71). Correlations ranged from 0.40 (95% CI: 0.32-0.48) to 0.60 (95% CI: 0.54-0.66) for HSUs versus PedsQL SCD dimension-specific scores. Conclusions: The existing mapping algorithms show acceptable construct validity in children and adolescents with SCD. Additional algorithms are needed for adults and for specific SCD comorbidities.
MeSH term(s)	Adolescent ; Algorithms ; Anemia, Sickle Cell ; Child ; Child Health ; Comorbidity ; Humans ; Psychometrics/methods ; Quality of Life/psychology ; Reproducibility of Results ; Surveys and Questionnaires
Language	English
Publishing date	2022-06-17
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1161148-0
ISSN	1573-2649 ; 0962-9343
ISSN (online)	1573-2649
ISSN	0962-9343
DOI	10.1007/s11136-022-03167-2
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