IU Indianapolis ScholarWorks :: Browsing by Author "Jacob, Seethal A."

Browsing by Author "Jacob, Seethal A."

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153. AYA Subspecialty Patient and Parent Views on COVID-19 Vaccination
(Elsevier, 2022) Hardman, Sara; Jacob, Seethal A.; Coven, Scott L.; Rahim, Mahvish Q.; Miller, Meagan E.; Zimet, Gregory D.; Meagher, Carolyn G.; Ott, Mary A.; Pediatrics, School of Medicine
Purpose: Adolescents/young adults (AYA) with hematologic and oncologic (heme-onc) conditions are important targets for vaccine outreach because they are at increased risk for complications from COVID-19. AYA patients may also need additional support, as they are transitioning from parent to independent vaccine decision-making. AYA with sickle cell disease (SCD) are of particular concern because a high proportion are African American and experience structural racism in addition to their illness. Our objective was to examine AYA and parent attitudes regarding the COVID-19 vaccine among heme-onc populations. Methods: As part of a larger IRB-approved study, we recruited vaccine decision-makers in pediatric SCD and oncology survivor clinics, including parents of adolescents under 18 years (n=35), AYA patients 18-21 years old (n=21), and parents of AYA patients 18-21 years old (n=14). After informed consent, participants completed a demographic survey and a semi-structured interview regarding their vaccine decision-making process. Example questions included “What do you see as the benefits of the COVID-19 vaccine?” and “What are your concerns about the COVID-19 vaccine?”. Saturation was reached. Interviews were audio recorded, transcribed, and analyzed using thematic analysis. Codes were developed from the literature and early interviews. Examples included “attitudes against vaccine,” “medical mistrust,” “hesitancy,” “vaccine side effects,” and “vaccine interactions with disease process.” Fisher exact statistical tests were performed to analyze quantitative data. Results: In SCD clinic, we recruited 31 index patients (mean age: 15.1±3.5 years; 30 African American and 1 Other or Mixed), yielding 11 AYA and 26 parent interviews. In survivor clinic, we recruited 26 index patients (mean age: 16.0±3.4 years; 20 White, 2 Hispanic or Latinx; 2 Other or Mixed, 1 African American, and 1 Asian), yielding 10 AYA and 23 parent interviews. Out of the total index patients, 8 had already received the vaccine, 13 were planning to receive it, 27 were considering it, and 9 had declined it. There was no clear relationship between patients’ diagnosis (SCD or cancer) and their vaccine decisions nor between the index patient’s age (under or over 18) and their vaccine decisions. A high proportion of participants saw benefits to vaccination, such as lowering personal risk, community benefits of preventing the spread of COVID-19, and a possible return to “normal.” However, many AYA and parent participants also had concerns toward the vaccine, including concerns about short-term side effects and the potential for unknown, long-term effects. Concerns were also voiced about how rapidly the vaccine was developed and misconceptions about the vaccine were common, namely the vaccine causing infertility or increasing one’s susceptibility to contracting COVID-19. Medical mistrust toward either the vaccine or providers was explicitly stated by several participants, the majority of whom were from minoritized groups. Conclusions: COVID-19 vaccines have the potential to protect medically and socially vulnerable AYA, however patient and parent concerns, misconceptions, and mistrust are still prevalent. These data provide insights into the design and implementation of vaccine counseling interviews for AYA subspecialty patients and families.
A Quality Improvement Initiative to Decrease Time to Analgesia in Patients With Sickle Cell and Vaso-Occlusive Crisis: A Population With Disparities in Treatment
(Springer Nature, 2022-09-25) Arnold, Tyler; Coffee, R. Lane, Jr.; Rosenberg, Leon; Jacob, Seethal A.; Thompson, Sean; Saavedra, Heather; Cico, Stephen John; Wagers, Brian; Emergency Medicine, School of Medicine
Introduction: Vaso-occlusive crises (VOCs) are the leading cause of emergency department (ED) visits and hospitalizations in patients with sickle cell disease (SCD). Timely administration of analgesia, within 60 minutes of patient registration, is the standard of care for SCD patients with VOCs. Patients with VOCs have longer times to initial analgesia compared to similar painful conditions. The primary aim of the project is to have 75% of patients with VOCs receive initial analgesia within 60 minutes of being registered, the current recommended time frame from the National Heart, Lung, and Blood Institute (NHLBI). Methods: A multi-disciplinary team used quality improvement (QI) methodology to develop a plan involving multiple Plan-Do-Study-Act (PDSA) cycles. A rapid evaluation process was employed which included notification of a patient with a VOC being placed in a room, rapid evaluation by all team members and use of an electronic order set. Results: The aim was met 72% of the time during our intervention period, compared to 17% pre-intervention. Average time to initial analgesia was decreased from 61 minutes to 42 minutes (p-value < 0.001), while time to disposition was also decreased when time goals were achieved. Conclusion: Using a rapid evaluation process we were able to decrease time to initial analgesia in a patient population that has previously experienced delays in care and decrease overall time to disposition.
Accelerated drug approvals and patient trust: impact of voxelotor and crizanlizumab for sickle cell disease
(American Society of Hematology, 2025) Karkoska, Kristine; Jacob, Seethal A.; McGann, Patrick T.; Pediatrics, School of Medicine
Crizanlizumab and voxelotor were several of the first drugs to receive the US Food and Drug Administration (FDA) approval for sickle cell disease (SCD) since the approval of hydroxyurea in 1998. Although initially exciting, additional data regarding efficacy and safety have since emerged for both drugs, first with the removal of crizanlizumab from the European market in August 2023. This was followed by Pfizer's abrupt decision in September 2024 to pull voxelotor from global markets owing to higher mortality in those on the drug vs placebo. These drugs highlight the importance and limitations of the FDA's accelerated approval process. In addition, the impact of these events, without transparent messaging, potentially threatened the fragile trust that providers have more recently been able to build with the SCD population regarding the medical system and research. Although there is a need for new therapies in SCD, we must prioritize both safety and efficacy and maintain trust in this population.
Active Music Engagement and Cortisol as an Acute Stress Biomarker in Young Hematopoietic Stem Cell Transplant Patients and Caregivers: Results of a Single Case Design Pilot Study
(Frontiers in Psychology, 2020-11) Holochwost, Steven J.; Robb, Sheri L.; Henley, Amanda K.; Stegenga, Kristin; Perkins, Susan M.; Russ, Kristen A.; Jacob, Seethal A.; Delgado, David; Haase, Joan E.; Krater, Caitlin M.; Medicine, School of Medicine
This paper reports the results of a single case design pilot study of a music therapy intervention (the Active Music Engagement, or AME) for young children undergoing hematopoietic stem cell transplantation (HCST) and their caregivers. The primary aims of the study were to determine feasibility/acceptability of the AME intervention protocol and data collection in the context of HCST. Secondary aims were to examine caregivers’ perceptions of the benefit of AME and whether there were changes in child and caregiver cortisol levels relative to the AME intervention. Results indicated that the AME could be implemented in this context and that data could be collected, though the collection of salivary cortisol may constitute an additional burden for families. Nevertheless, data that were collected suggest that families derive benefit from the AME, which underscores the need for devising innovative methods to understand the neurophysiological impacts of the AME.
Adolescent/Young Adult (AYA) Subspecialty Patient and Parent Views on COVID-19 Vaccination
(2022-03) Hardman, Sara L.; Rahim, Mahvish Q.; Miller, Meagan E.; Coven, Scott L.; Jacob, Seethal A.; Zimet, Gregory D.; Meagher, Carolyn G.; Ott, Mary A.
Purpose: Adolescents/young adults (AYA) with hematologic and oncologic (heme-onc) conditions are important targets for vaccine outreach because they are at increased risk for complications from COVID-19. AYA patients may also need additional support, as they are transitioning from parent to independent vaccine decision-making. AYA with sickle cell disease (SCD) are of particular concern because a high proportion are African American and experience structural racism in addition to their illness. Our objective was to examine AYA and parent attitudes regarding the COVID-19 vaccine among heme-onc populations. Methods: As part of a larger IRB-approved study, we recruited vaccine decision-makers in pediatric SCD and oncology survivor clinics, including parents of adolescents under 18 years (n=35), AYA patients 18-21 years old (n=21), and parents of AYA patients 18-21 years old (n=14). After informed consent, participants completed a demographic survey and a semi-structured interview regarding their vaccine decision-making process. Example questions included “What do you see as the benefits of the COVID-19 vaccine?” and “What are your concerns about the COVID-19 vaccine?”. Saturation was reached. Interviews were audio recorded, transcribed, and analyzed using thematic analysis. Codes were developed from the literature and early interviews. Examples included “attitudes against vaccine,” “medical mistrust,” “hesitancy,” “vaccine side effects,” and “vaccine interactions with disease process.” Fisher exact statistical tests were performed to analyze quantitative data. Results: In SCD clinic, we recruited 31 index patients (mean age: 15.1±3.5 years; 30 African American and 1 Other or Mixed), yielding 11 AYA and 26 parent interviews. In survivor clinic, we recruited 26 index patients (mean age: 16.0±3.4 years; 20 White, 2 Hispanic or Latinx; 2 Other or Mixed, 1 African American, and 1 Asian), yielding 10 AYA and 23 parent interviews. Out of the total index patients, 8 had already received the vaccine, 13 were planning to receive it, 27 were considering it, and 9 had declined it. There was no clear relationship between patients’ diagnosis (SCD or cancer) and their vaccine decisions nor between the index patient’s age (under or over 18) and their vaccine decisions. A high proportion of participants saw benefits to vaccination, such as lowering personal risk, community benefits of preventing the spread of COVID-19, and a possible return to “normal.” However, many AYA and parent participants also had concerns toward the vaccine, including concerns about short-term side effects and the potential for unknown, long-term effects. Concerns were also voiced about how rapidly the vaccine was developed and misconceptions about the vaccine were common, namely the vaccine causing infertility or increasing one’s susceptibility to contracting COVID-19. Medical mistrust toward either the vaccine or providers was explicitly stated by several participants, the majority of whom were from minoritized groups. Conclusion: COVID-19 vaccines have the potential to protect medically and socially vulnerable AYA, however patient and parent concerns, misconceptions, and mistrust are still prevalent. These data provide insights into the design and implementation of vaccine counseling interviews for AYA subspecialty patients and families. Educational Objective: Examine adolescent/young adult and parent attitudes regarding the COVID-19 vaccine among hematology and oncology populations.
Assessing psychosocial risk factors in children with Sickle Cell Disease
(Springer Nature, 2025-01-18) Frey, Nicole; LaMotte, Julia E.; Bouck, Jillian R.; Fancher, Lauren; Parker, Genese T.; Carter, Allie; Jacob, Seethal A.; Pediatrics, School of Medicine
Background: Individuals with Sickle Cell Disease (SCD) are a minoritized and marginalized community that have disparate health outcomes as a result of systemic racism and disease-related stigma. The purpose of this study was to determine the psychosocial risk factors for families caring for children with SCD at a pediatric SCD center through use of the Psychosocial Assessment Tool (PAT), a validated caregiver-report screener. Methods: The PAT was administered annually during routine clinical visits and scored by the SCD Social Worker to provide tailored resources to families. The PAT stratifies scores into 3 categories of psychosocial concern: Universal, Targeted, Clinical. PATs administered between September 2021-December 2022 were analyzed. Results: Two hundred twenty-five PATs were included for analysis. Most caregivers identified as Black, single Women over 21 years old with a high school degree or more. The average patient age was 8.2 years (0-22 years). Sixty-seven percent of PATs fell into the Universal category. Dyads that scored in the Targeted or Clinical categories were more likely to report financial hardship, caregiver mental health concerns, and family stressors (p < 0.001). Nearly 50% of all families reported some form of financial difficulty, including almost 40% in the Universal category. Conclusions: Universal implementation of a psychosocial risk screener identified financial challenges for many families, as well as caregiver burden and mental health concerns, allowing for timely resource support. However, overall risk for many of these families was categorized as Universal or low risk, indicating that distribution of resources and support cannot be based on PAT category alone.
Caregiver experiences with accessing sickle cell care and the use of telemedicine
(BMC, 2022) Jacob, Seethal A.; Daas, Roua; Feliciano, Anna; LaMotte, Julia E.; Carroll, Aaron E.; Pediatrics, School of Medicine
Background: Sickle cell disease (SCD) is associated with a wide range of complications. However, a multitude of barriers prevent SCD patients from receiving adequate healthcare, including difficulties with transportation and lack of provider knowledge about disease sequelae. Importantly, studies have demonstrated the benefits of telemedicine in addressing barriers to healthcare. While previous studies have identified barriers to care through quantitative methods, few studies have explored barriers which affect the pediatric SCD patient population in the Midwest, wherein the geographical landscape can prohibit healthcare access. Furthermore, few studies have established acceptability of telemedicine among caregivers and patients with SCD. Methods: This study aims to increase understanding of barriers to care and perceptions of telemedicine by caregivers of pediatric SCD patients in a medically under-resourced area in the Midwest. Researchers conducted semi-structured interviews with caregivers of children with SCD. The interviews were audio-recorded and transcribed. Thematic analyses were performed. Results: Researchers interviewed 16 caregivers of 15 children with SCD. Thematic analyses of the interview transcripts revealed four broad themes regarding caregiver burden/stress, both facilitators and barriers to SCD healthcare, and general thoughts on the acceptability/usefulness of telemedicine. Conclusion: This qualitative study describes common burdens faced by caregivers of SCD, barriers to and facilitators of SCD care in the Midwest, and caregiver perceptions of the usefulness and efficacy of telemedicine for SCD care.
Cortisol as an Acute Stress Biomarker in Young Hematopoietic Cell Transplant Patients/Caregivers: Active Music Engagement Protocol
(Mary Ann Liebert, 2020-05-11) Russ, Kristen A.; Holochwost, Steven J.; Perkins, Susan M.; Stegenga, Kristin; Jacob, Seethal A.; Delgado, David; Henley, Amanda K.; Haase, Joan E.; Robb, Sheri L.; Medicine, School of Medicine
Objective: Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. Design: The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type. Setting/Location: Pediatric inpatient HSCT unit. Subjects: Eligible participants are dyads of children 3-8 years old, hospitalized for HSCT, and their caregiver. Children with malignant and nonmalignant conditions will be eligible, regardless of transplant type. Intervention: AME intervention is delivered by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in, and independent use of, music play to manage the inter-related emotional distress experienced by children and their caregivers during HSCT. Dyads will receive two 45-min AME sessions each week during hospitalization. Outcome Measures: Eight collections of blood (child) and saliva (child/caregiver) will be performed for cortisol measurement. The authors will also collect self-report and caregiver proxy measures for dyad emotional distress, quality of life, and family function. At study conclusion, qualitative caregiver interviews will be conducted. Results: Planned analyses will be descriptive and evaluate the feasibility of participant recruitment, cortisol collection, planned evaluations, and AME delivery. Analysis of qualitative interviews will be used to gain an understanding about the ease/burden of biological sample collection and any perceived benefit of AME. Conclusions: Behavioral intervention studies examining biological mechanisms of action in pediatric transplant populations are rare. Findings will provide important information about the feasibility/acceptability of collecting cortisol samples during a high-intensity treatment and advance understanding about the use of active music interventions to mitigate child/caregiver distress during the transplant period.
Decision Making in Fertility Preservation Prior to Pursuing Curative Treatments for Sickle Cell Disease
(2023-03-24) Collins, Angela J.; Noel, Josey; Abraham, Olivia; Hornberger, Sydney; Rahim, Mahvish Q.; Jacob, Seethal A.; Saraf, Amanda J.
AUTHORS: Angela Collins, MPH(1), Josey Noel(1), Olivia Abraham(1), Sydney Hornberger(1), Mahvish Rahim MD, MBA, MSCR(1,2), Seethal Jacob MD, MS, FAAP(1,2), Amanda Saraf DO(1,2). AFFILIATIONS: (1) Indiana University School of Medicine, Indianapolis, IN. (2) Department of Pediatrics, Riley Hospital for Children, Indianapolis, IN. ABSTRACT: RELEVANT BACKGROUND: Sickle cell disease (SCD) is one of the most commonly inherited hemoglobinopathies, often well controlled on Hydroxyurea (HU). Curative therapy options exist with stem cell transplant (SCT) and gene therapy. While both the underlying condition and routine therapy such as HU is thought to impact fertility, the chemotherapy used for both SCT and gene therapy can result in permanent sterility. Infertility can have a negative impact on long-term measures of quality of life. As a result, fertility preservation ought to be offered to all patients with SCD planning for curative treatment. Ovarian tissue cryopreservation and mature oocyte or embryo cryopreservation are fertility preservation options available for pre and postpubescent females respectively. Testicular tissue cryopreservation (TTC) is an experimental option for prepubescent males and sperm cryopreservation is utilized for postpubescent males. CASE DESCRIPTION: We present three cases of patients with SCD who pursued fertility preservation prior to receiving curative therapy with a myeloablative preparative regimen. Patient 1 is a prepubescent 8-year-old male with SCD controlled with HU who opted for TTC as fertility preservation prior to receiving a matched sibling SCT. Patient 2 is a 13-year-old male with SCD controlled with HU who opted for TTC following a failed sperm banking attempt prior to haploidentical SCT. Patient 3 is an 18-year-old female with SCD controlled with HU and Voxelator who opted to have eggs harvested prior to gene therapy. CLINICAL SIGNIFICANCE: As highlighted by these cases, continued research on safe and effective fertility preservation as well as counseling about both the impact of the underlying disease on fertility and treatment-related fertility risks is imperative to improve long-term quality of life measures. CONCLUSION: These patients demonstrate a need for further emphasis on fertility risk counseling in this patient population and ensuring that discussions regarding preservation options is standard of practice at every institution.
Emergency Department Chief Complaints Among Children With Cancer
(Wolters Kluwer, 2018-08) Burcham, Megan; Cochrane, Anneli R.; Jacob, Seethal A.; Carroll, Aaron E.; Mueller, Emily L.; Pediatrics, School of Medicine
Children with cancer have high emergency department (ED) utilization, but little is known about their chief complaints. A retrospective chart review of ED chief complaints for children with cancer (actively receiving therapy) at Riley Hospital for Children from January 2014 to December 2015 was performed. Proportions of visits and disposition for top 5 chief complaints were determined. Multivariate logistic regression analyzed factors associated with admission. There were 598 encounters by 231 children with cancer. About half (49%) had >1 complaint. The 5 most common primary chief complaints were: fever (60.2%), pain (6.5%), nausea/vomiting (5.0%), bleeding (3.9%), and abnormal laboratory values (3.3%). Admission rates varied, with the highest rates being for nausea/vomiting (66.7%). Risk factors for admission were: hospitalization in prior 4 weeks (odds ratio [OR], 2.67; confidence interval [CI], 1.77-4.02), chief complaint of fever (OR, 1.90; CI, 1.16-3.09). For each increase in number of chief complaints, odds increased by 1.45 (CI, 1.14-1.83). Black, non-Hispanic (OR, 0.44; CI, 0.22-0.88) as compared with white, non-Hispanic, younger age (OR, 0.53; CI, 0.29-0.99) or complaint of abnormal laboratory values (OR, 0.20; CI, 0.06-0.68) had lower odds of admission. Children with cancer present to the ED with multiple and varied complaints. Future interventions could aim to improve caregiver anticipatory guidance and ED visit preparedness.

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