Browsing by Author "Coven, Scott L."
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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 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 Cancer prevention, screening, and survivorship ECHO: A pilot experience with an educational telehealth program(Wiley, 2022) Severance, Tyler S.; Milgrom, Zheng; Carson, Anyé; Scanlon, Caitlin M.; O’Brien, Rishika Chauhan; Anderson, Brent; Robertson, Mary; Janota, Andrea; Coven, Scott L.; Mendonca, Eneida A.; Duwve, Joan; Vik, Terry A.; Pediatrics, School of MedicineIntroduction: The American Cancer Society, Inc. (ACS) estimates that 37,940 Indiana residents were diagnosed with cancer in 2020, which remains the leading cause of death in the state. Across the cancer continuum, national goals have been established targeting recommended benchmarks for states in prevention, screening, treatment, and survivorship. Indiana consistently falls below most goals for each of these targeted categories. Methods: To address these disparities, we implemented Project ECHO (Extension for Community Healthcare Outcomes) as a virtual telehealth educational platform targeted at local healthcare providers. ECHO programs utilize a novel tele-mentoring approach to the education of clinicians in a hub/spoke design. Sessions occurred twice monthly from September 2019 to September 2020 and consisted of a traditional didactic lecture and a case-based discussion led by participating providers. Results: During the pilot year there were a total of 22 ECHO sessions with 140 different participants. On average, 15.5 spokes attended each session with increasing participation at the end of the year. Post-session surveys suggested generally favorable perception with 72% of respondents finding the quality "excellent." Discussion: Given the increasing rate of recurrent participation toward the end of the pilot year in conjunction with the favorable survey responses following each session, it was felt that the program was overall successful and warranted continued implementation. Conclusion: The Project ECHO platform is a validated telehealth education platform that has the potential to impact cancer care at multiple points along the cancer continuum at the regional level.Item DEI-05. Assessing Household Material Hardship in Children with Central Nervous System (CNS) Tumors(Oxford University Press, 2024-06-18) Coven, Scott L.; Tran, Yvette H.; Park, Seho; Mendonça, Eneida A.; Pediatrics, School of MedicineBACKGROUND: Household material hardship (HMH) is defined as unmet basic needs including food, heat, housing, or transportation. Researchers have documented higher rates of poor nutrition, injury, infectious disease, and hospitalization in healthy children living in families with household material hardship. Furthermore, targeted interventions exist to modify these health outcomes. However, little is known regarding the relationship between social determinants of health and their impact on overall and quality of survival for children with brain or spinal cord tumors. The current available information is based upon retrospective and secondary data sources, often limited to basic socioeconomic factors such as race and ethnicity. The objective was to describe the change in household material hardship through patient reported outcome measures from baseline to six-months and explore the association between social determinants of health, including prospective household material hardship data, and clinical outcomes among children with brain and spinal cord tumors. METHODS: We aimed to enroll 150 patients with a brain or spinal cord tumors who were followed by the Pediatric Neuro-Oncology Program at Riley Hospital for Children at IU Health. These participants were approached during their routinely scheduled clinic visits by a member of the study team. Written or verbal consent/assent was obtained, and their data was transcribed into a REDCap™ database. RESULTS: To date, we have enrolled 118 children onto this study, with 35/76 participants completing their six-month follow-up survey. In line with Kira Bona’s previous work, we have found that around 30% acknowledged one positive domain of household material hardship. Additionally, we have found that almost 40% of our cohort fall below the 200% Federal Poverty Level, which is often considered a cutpoint for lower socioeconomic status. CONCLUSIONS: We have shown that collecting prospective patient reported sociodemographic information is feasible in a busy clinical setting.Item Evaluation of the Pediatric Neuro-Oncology Resources Available in Chile(American Society of Clinical Oncology, 2021-03) Abu-Arja, Mohammad H.; Rojas del Río, Nicolás; La Madrid, Andres Morales; Lassaletta, Alvaro; Coven, Scott L.; Moreno, Rosa; Valero, Miguel; Perez, Veronica; Espinoza, Felipe; Fernandez, Eduardo; Santander, José; Tordecilla, Juan; Oyarce, Veronica; Kopp, Katherine; Bartels, Ute; Qaddoumi, Ibrahim; Finlay, Jonathan L.; Cáceres, Adrián; Reyes, Mauricio; Espinoza, Ximena; Osorio, Diana S.; Pediatrics, School of MedicinePurpose: Pediatric neuro-oncology resources are mostly unknown in Chile. We report the human and material resources available in Chilean hospitals providing pediatric neuro-oncology services. Methods: A cross-sectional survey was distributed to 17 hospitals providing pediatric neuro-oncology services (Programa Infantil Nacional de Drogas Antineoplásicas [PINDA] hospitals, 11; private, 6). Results: Response rate was 71% (PINDA, 8; private, 4). Pediatric neuro-oncology services were mainly provided within general hospitals (67%). Registries for pediatric CNS tumors and chemotherapy-related toxicities were available in 100% and 67% of hospitals, respectively. CNS tumors were treated by pediatric oncologists in 92% of hospitals; none were formally trained in neuro-oncology. The most used treatment protocols were the national PINDA protocols. All WHO essential medicines for childhood cancer were available in more than 80% of the hospitals except for gemcitabine, oxaliplatin, paclitaxel, and procarbazine. The median number of pediatric neurosurgeons per hospital was two (range, 2-6). General neuroradiologists were available in 83% of the centers. Pathology specimens were sent to neuropathologists (58%), adult pathologists (25%), and pediatric pathologists (17%). Intensity-modulated radiotherapy, conformal radiotherapy, and cobalt radiotherapy were used by 67%, 58%, and 42% of hospitals, respectively. Only one private hospital performed autologous hematopoietic cell transplant for children with CNS tumors. Conclusion: A wide range of up-to-date treatment modalities are available for children with CNS tumors. Our survey highlights future directions to improve the pediatric neuro-oncology services available in Chile such as the expansion of multidisciplinary clinics, palliative care services, long-term cancer survivorship programs, dedicated clinical research support teams, establishing standardized mechanism for sending pathologic specimen for second opinion to international specialized centers, and establishing specialized neuro-oncology training program.Item OTHR-27. Narrative Medicine Applied: A Study Elucidating How One Neuro-Oncology Team Grapples With Distress(Oxford University Press, 2024-06-18) Riley, Kathy; Toback, Alison L.; Knight, Kelsey; Wimer, Tammy; Coven, Scott L.; Tailor, Jignesh K.; Lion, Alex H.; Medicine, School of MedicineBACKGROUND: Absorbing the cumulative weight of neuro-oncology patient stories in isolation leads providers to experience burnout and distress that some in our study called “debilitating.” Sands, Stanley, & Charon (2008) describe the field of pediatric oncology as one that “taunts professionals with the random unfairness” of grave childhood illness. They reason that clinicians in this demanding field may benefit from narrative training to build empathy, teamwork, and resilience. Narrative medicine is a rigorous and evidence-based field of study that utilizes the method of close reading of literature and art to engage providers in discussion and personal reflection. In narrative medicine workshops, participants immerse themselves in a text or image, contemplate their experiences and their relation to the text, write in response to a prompt, and share their writings with one another (Charon, et al., 2017). METHODS: This study sought to understand how narrative medicine workshops conducted in a pediatric neuro-oncology clinical setting impacted individual team members, as well as inter- and intra-team relationships. Data collection for the study included pre- and post-surveys, qualitative interviews, and observation notes recorded by workshop facilitators. Researchers applied Clark’s (2014) framework of three distinct levels – relationship to oneself, relationship to the patient, and relationship to others on the team – to development of pre- and post-survey and qualitative interview questions. RESULTS: Although quantitative data failed to demonstrate that the workshops reduced participant distress, qualitative research generated evidence that the very act of participating in narrative medicine workshops provided a safe space for providers to discuss job-related distress, breaking down hierarchical barriers and moving them toward what one participant called “professional intimacy.” CONCLUSIONS: This research suggests that engaging in narrative medicine practice as a healthcare team may in and of itself alleviate distress and foster healing dialogue in a stressful clinical environment suffused with pain and loss.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 QOL-49. Books4Brains: Piloting a Community Circle Book Club to Improve Self Expression(Oxford University Press, 2024-06-18) Knight, Kelsey M.; Appel, Susan; Coven, Scott L.; Pediatrics, School of MedicineBACKGROUND: Children with brain or spinal cord tumors often have limited interactions with their primary care providers who focus on developmentally appropriate recommendations, including the assessment of literacy. Additionally, we know that children with brain or spinal cord tumors have neurocognitive disruptions secondary to their diagnosis. Due to their disease process, these children are at high-risk for learning difficulties. We want to assist in building their self-confidence and acceptance. The objective was to provide a monthly virtual experience that utilized books, creative writing, and illustration to build a community centered on trust, shared experiences, and discussions of social emotional tools. METHODS: We aimed to enroll 40 total participants diagnosed with a brain or spinal cord tumor who were followed by the Pediatric Neuro-Oncology Program at Riley Hospital for Children. These participants were divided amongst two groups: 1st-3rd grade and 6th-8th grade. After final enrollment, we had a total of 30 participants that received the following supplies: a copy of each months book, an audio recording of each book, and creative writing and craft supplies for each session. RESULTS: We held three monthly hour-long virtual sessions for each group on Saturday mornings. Ten total children were available to meet consistently over the two groups. Positive feedback we received included, “we loved it,” “everyone felt included in book time,” and “[it] was so helpful that the books were read out loud and it was amazing to have the read along aspect with it for her visual impairment.” We even heard from one caregiver that “[they] noticed that she has some more tools in her toolbox when she is facing a difficult day.” CONCLUSIONS: A pilot community book club is feasible through community partnerships. We plan to build on this experience by focusing on improving consistent attendance in future sessions.Item Social determinants of health and pediatric cancer survival: A systematic review(Wiley, 2022) Tran, Yvette H.; Coven, Scott L.; Park, Seho; Mendonca, Eneida A.; Pediatrics, School of MedicineDespite treatment advancements and improved survival, approximately 1800 children in the United States will die of cancer annually. Survival may depend on nonclinical factors, such as economic stability, neighborhood and built environment, health and health care, social and community context, and education, otherwise known as social determinants of health (SDoH). Extant literature reviews have linked socioeconomic status (SES) and race to disparate outcomes; however, these are not inclusive of all SDoH. Thus, we conducted a systematic review on associations between SDoH and survival in pediatric cancer patients. Of the 854 identified studies, 25 were included in this review. In addition to SES, poverty and insurance coverage were associated with survival. More studies that include other SDoH, such as social and community factors, utilize prospective designs, and conduct analyses with more precise SDoH measures are needed.