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Item 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 MedicinePurpose: 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.Item A familial SAMD9 variant present in pediatric myelodysplastic syndrome(Cold Spring Harbor Laboratory, 2023-05-09) Rahim, Mahvish Q.; Rahrig, April; Overholt, Kathleen; Conboy, Erin; Czader, Magdalena; Saraf, Amanda June; Pediatrics, School of MedicineMyelodysplastic syndrome (MDS) is a rare pediatric diagnosis characterized by ineffective hematopoiesis with potential to evolve into acute myelogenous leukemia (AML). In this report, we describe a unique case of a 17-yr-old female with an aggressive course of MDS with excess blasts who was found to have monosomy 7 and a SAMD9 germline variant, which has not previously been associated with a MDS phenotype. This case of MDS was extremely rapidly progressing, showing resistance to chemotherapy and stem cell transplant, unfortunately resulting in patient death. It is imperative to further investigate this rare variant to aid in the future care of patients with this variant.Item 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.Item COVID-19 and hereditary spherocytosis: A recipe for hemolysis(Wiley, 2020-07-25) Severance, Tyler S.; Rahim, Mahvish Q.; French, James; Baker, Richelle M.; Shriner, Andrew; Khaitan, Alka; Overholt, Kathleen M.; Pediatrics, School of MedicineWe describe a patient infected with COVID-19 in the setting of a known chronic illness, HS, and the resulting presentation and medical complications.Item 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.Item Identifying Barriers To HPV Vaccination For Patients With Sickle Cell Disease And Childhood Cancer Survivors(Wolters Kluwer, 2023) Rahim, Mahvish Q.; Jacob, Seethal A.; Coven, Scott L.; Miller, Meagan; Meagher, Carolyn G.; Lozano, Gabriella; Zimet, Gregory; Ott, Mary A.; Pediatrics, School of MedicineHuman papillomavirus (HPV) vaccination prevents the development of HPV-associated malignancies. Adolescent and young adult survivors of childhood cancers and patients with sickle cell disease (SCD) are vulnerable patient populations who would significantly benefit from HPV vaccination. In this multimethod study, a retrospective chart review found a notable difference between the rate of HPV vaccinations and other age-appropriate vaccinations in 177 childhood cancer survivors and in 70 patients with SCD. We then sought to describe patient and caregiver beliefs regarding HPV vaccination, through semistructured interviews with 21 patients and 48 caregivers. Interviews were analyzed with a thematic content approach to understand attitudes regarding the HPV vaccination. Qualitative interviews noted that many caregivers and adolescents had baseline misconceptions regarding the HPV vaccination in general and in context with their chronic illness. It was found that a strong recommendation from a trusted subspecialty provider would create reassurance about vaccination and reduce misconceptions and concerns about side effects in the context of a chronic illness. Counseling from subspecialists could have a strong impact on understanding the HPV vaccine in the context of chronic illness. This would likely help overcome many of the barriers to vaccination that are encountered by patients with SCD or oncology survivors.Item Maintenance of an Immunogenic Response to Pneumococcal Vaccination in Children With Sickle Cell Disease(Wolters Kluwer, 2022) Rahim, Mahvish Q.; Arends, Alexandria M.; Jacob, Seethal A.; Pediatrics, School of MedicinePatients with sickle cell disease (SCD) are at increased risk for invasive pneumococcal disease because of splenic dysfunction. To mitigate this risk, patients are protected with prophylactic penicillin until completion of pneumococcal vaccination series. The objective of this study was to assess the maintenance of a protective immune response to pneumococcal vaccination in children with SCD. A retrospective review was conducted between June 2019 and June 2020 of all patients with SCD patients for whom it had been 5±1 year since completion of PPSV23 vaccination series. A total of 41 patients were analyzed. The majority of children (68%) were able to maintain an adequate immune response. There was no identifiable disease characteristic associated with maintenance of an appropriate immunogenic response. This study finds that patients with SCD are able to maintain an adequate immune response at the 5±1 year time point from completion of PPSV23 vaccination series. Similarly, patients were not found to have an increased rate of invasive pneumococcal disease even if not meeting criteria for adequate pneumococcal serum titer levels. Maintenance of pneumococcal titers suggests that there may not be a need for revaccination at the 5-year time point in this patient population.Item Pediatric hematology and oncology physician and nurse practitioner views of the HPV vaccine and barriers to administration(Taylor & Francis, 2023) Miller, Meagan E.; Rahim, Mahvish Q.; Coven, Scott L.; Jacob, Seethal A.; Zimet, Gregory D.; Meagher, Carolyn G.; Ott, Mary A.; Medicine, School of MedicineRates of Human papilloma virus (HPV) vaccination among pediatric survivors of cancer and patients with sickle cell disease are lower than the national average. While recent attention has focused on patient HPV vaccine hesitancy and refusal, less is known about provider-level and system-level barriers to vaccinations in pediatric hematology/oncology (PHO) populations. Applying thematic analysis to qualitative interviews with 20 pediatric hematology/oncology physicians and nurse practitioners, we examine their views regarding HPV vaccination, with a focus on access and barriers to providing HPV vaccination in PHO practices. Results demonstrated that despite 90% of interviewees supporting HPV vaccination in their population, the number of pediatric hematology/oncology providers who reported that they counsel about HPV or provide HPV vaccination was 45%, even in stem cell and sickle cell clinics, where other childhood vaccines are commonly provided. Clinicians identified provider-level, clinic-level, and system-level barriers to giving the HPV vaccination, including but not limited to time/flow constraints, lack of resources, and continued education regarding the HPV vaccine. These barriers impede the ability for pediatric hematology/oncology providers to counsel and provide HPV vaccination to this specialized population.Item Pediatric hematology/oncology physician and nurse practitioner attitudes towards the COVID-19 vaccines: A qualitative study(Taylor & Francis, 2022) Miller, Meagan E.; Rahim, Mahvish Q.; Coven, Scott L.; Jacob, Seethal A.; Zimet, Gregory D.; Meagher, Carolyn G.; Ott, Mary A.; Medicine, School of MedicineAs of 05/28/2021, SARS-CoV-2 (COVID-19) had caused 3.9 million infections in the United States (US) pediatric population since its discovery in December of 2019. The development and expansion of vaccination has markedly changed the shape of the epidemic. In this qualitative study, we report on pediatric hematology/oncology provider views on the COVID-19 vaccine prior to approval in the adolescent population <16 years of age. Results from interviews with 20 providers across the state of Indiana showed that most were supportive of the COVID-19 vaccine for healthy adults. However, the majority also expressed a need to see more data on the safety and effectiveness of COVID-19 vaccinations in pediatric hematology/oncology populations. While they recognized the public health importance of vaccination, their duty to protect their patients led to a need for more specific safety and efficacy data.Item Right on Schedule: Improving the Rate of Clinic Appointments Scheduled Prior to Hospital Hospital Discharge(Wolters Kluwer, 2022-01-21) Rahim, Mahvish Q.; Griffin, Jordyn; Hege, Kerry; Mueller, Emily L.; Kauffman, Kristine; Corman, Stacey; Anderson, Kari; Woodburn, Stayce; Drayton Jackson, Meghan; Pediatrics, School of MedicineIntroduction: Children with cancer and blood disorders have many healthcare needs that often require inpatient and outpatient management. There is potential for a lapse in care when patients frequently transition between these settings. We aimed to improve the process and increase the rate of scheduled outpatient follow-up appointments at the time of inpatient discharge for all pediatric hematology-oncology patients from a baseline of 68-80%. Methods: A multidisciplinary team developed several Plan-Do-Study-Act cycles to standardize and improve the process of scheduling follow-up appointments, communication to schedulers, and discussion of discharge planning. QI Macros for Excel Version 2019.06 was used for statistical analysis. Our primary outcome was displayed over time with a p-chart. Results: Plan-Do-Study-Act interventions had a statistically significant impact in increasing the percentage of patients with follow-up outpatient appointments scheduled at the time of inpatient discharge from a baseline of 68% to consistently over 80%. Conclusions: This study demonstrates that standardization of care processes and reminders and education of healthcare providers about the new approaches can improve the rates of outpatient follow-up appointments scheduled at the time of hospital discharge from inpatient care.