Browsing by Author "Mueller, Emily L."
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Item An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study(JMIR, 2024-10-17) Mueller, Emily L.; Cochrane, Anneli R.; Campbell, Madison E.; Nikkhah, Sarah; Holden, Richard J.; Miller, Andrew D.; Pediatrics, School of MedicineBackground: Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs. Objective: This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers' perceptions and areas for improvement, and validate the app's design concepts and use cases. Methods: In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement. Results: A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child's medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking. Conclusions: The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements.Item An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Co-design and User Testing Study(JMIR, 2022-03-16) Mueller, Emily L.; Cochrane, Anneli R.; Campbell, Madison E.; Nikkhah, Sarah; Miller, Andrew D.; Pediatrics, School of MedicineBackground: Caregivers face new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide immediate support at their fingertips to aid in tracking symptoms, managing medication, and planning for emergencies. Objective: The objective of this study is to engage directly with end users and proxies to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer. Methods: We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end users) to co-design and create the prototype of the Cope 360 mobile health app. Alpha testing was accomplished by walking the users through a series of predetermined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semistructured interviews and quantitative surveys to capture demographic information and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo (version 12; QSR International). Results: This study included 8 caregivers (aged 33-50 years) of children with cancer, with most children receiving chemotherapy, and 6 nurse coordinators, with 3 (50%) of them having 11 to 20 years of nursing experience. The mean system usability score given by caregivers was 89.4 (95% CI 80-98.8). Results were grouped by app function assessed with focus on specific attributes that were well received and those that required refinement. The major issues requiring refinement included clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors. Conclusions: The Cope 360 app was well received by caregivers of children with cancer but requires further refinement for clarity and visual representation. After refinement, testing among caregivers in a real-world environment is needed to finalize the Cope 360 app before its implementation in a randomized controlled trial.Item Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children with Cancer and Their Caregivers(Wolters Kluwer, 2020-11) Mueller, Emily L.; Cochrane, Anneli R.; Moore, Courtney M.; Jenkins, Kelli B.; Bauer, Nerissa S.; Wiehe, Sarah E.; Pediatrics, School of MedicineBackground: Caregivers of children with cancer can experience stress when seeking care in the emergency department (ED). We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. Methods: A qualitative evaluation of ED visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age: 11 to 21 y) currently receiving therapy for cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. Results: A total of 25 toolkits were received (7 children, 18 caregivers), with about three quarters of participants living >1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decision-making regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-to-provider and provider-to-caregiver/patient communication. Conclusions: The information gained from this study has the potential to inform a tool to support this population in planning for and managing emergent medical issues. This tool has the potential to improve patient and caregiver satisfaction, patient-centered outcomes, and clinical outcomes.Item Correction to: Hospital discharges for fever and neutropenia in pediatric cancer patients: United States, 2009(BMC, 2017-10-02) Mueller, Emily L.; Walkovich, Kelly J.; Mody, Rajen; Gebremariam, Achamyeleh; Davis, Matthew M.; Pediatrics, School of MedicineItem 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 MedicineChildren 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.Item Examining adherence to oral anticancer medications through a human factors engineering framework: Protocol for a scoping review(PLOS, 2022-09-22) Lin, Irene D.; Shotts, Matthew B.; Al-Hader, Ahmad; Weddle, Kellie Jones; Holden, Richard J.; Mueller, Emily L.; Macik, Monica R.; Ramirez, Mirian; Abebe, Ephrem; Medicine, School of MedicineBackground The number of oral anticancer medications has increased over the past few decades, opening new possibilities in cancer care and improving convenience for patients and caregivers. However, adherence levels continue to be suboptimal, potentially jeopardizing therapeutic benefits. Poor adherence levels may indicate gaps in current strategies and interventions aimed at enhancing medication adherence and the extent to which they address the complex and multi-faceted medication management needs of patients and their caregivers. Beyond commonly understood barriers (e.g., forgetting to take medications), adherence interventions must address systemic barriers that may not be fully appreciated by members of the healthcare system. This scoping review aims to apply a systems framework (human factors engineering framework) to examine system elements targeted by adherence enhancing interventions. Methods Studies published in English, reporting adherence interventions for oral anticancer medications with adherence and/or persistence as primary outcome measures will be included in this review. We will search the following electronic databases with no limits on dates: Ovid MEDLINE, Cochrane Library, Web of Science Core Collection, Embase, CINAHL Complete, PsycInfo, and Scopus. Two reviewers will independently screen study titles and abstracts for inclusion with a third reviewer adjudicating conflicts. Full text of included articles will be used to extract information on systemic barriers targeted by adherence interventions as well as information about intervention type, outcomes, and study characteristics. Extracted information will be synthesized to generate a summary of work system factors targeted by adherence interventions. Discussion Through application of a systems-based approach, this scoping review is expected to shed light on the complex and multifaceted nature of factors influencing adherence to oral anticancer agents. The review may also identify areas that are ripe for further research.Item Fever and neutropenia hospital discharges in children with cancer: A 2012 update(Taylor & Francis, 2016) Mueller, Emily L.; Croop, James; Carroll, Aaron E.; Department of Pediatrics, IU School of MedicineFever and neutropenia (FN) is a common precipitant for hospitalization among children with cancer, but hospital utilization trends are not well described. This study describes national trends for hospital discharges for FN among children with cancer for the year 2012, compared with the authors’ previous analysis from 2009. Data were analyzed from the Kids’ Inpatient Database (KID), an all-payer US hospital database, for 2012. Pediatric patients with cancer who had a discharge for FN were identified using age ≤19 years, urgent or emergent admit type, nontransferred, and a combination of International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes for fever and neutropenia. The authors evaluated factors associated with a “short length of stay” (SLOS). Sampling weights were used to permit national inferences. In 2012, children with cancer accounted for 1.8% of pediatric hospital discharges (n = 120,675), with 12.2% (n = 13,456) of cancer-related discharges meeting FN criteria. Two fifths of FN discharges had a SLOS, which accounted for $91 million (2015 US$) in hospital charges. The majority had no serious infections; most common infections were viral infection (9.6%) or upper respiratory infection (9.6%). Factors significantly associated with SLOS included having a diagnosis of ear infection (odds ratio [OR] = 1.54, 95% confidence interval [CI]: 1.16–2.03), soft tissue sarcoma (OR = 1.47, CI: 1.10–1.95), and Hodgkin lymphoma (OR = 1.51, CI: 1.09–2.10), as compared with not having those diagnoses. SLOS admissions continue to be rarely associated with serious infections, but contribute substantially to the burden of hospitalization for pediatric FN. Implementation of risk stratification schemas to identify patients who meet low-risk criteria may decrease financial burden.Item Healthcare utilization and spending by children with cancer on Medicaid(Wiley, 2017-11) Mueller, Emily L.; Hall, Matt; Berry, Jay G.; Carroll, Aaron E.; Macy, Michelle L.; Medicine, School of MedicineBackground Children with cancer are a unique patient population with high resource, complex healthcare needs. Understanding their healthcare utilization could highlight areas for care optimization. Procedure We performed a retrospective, cross-sectional analysis of the 2014 Truven Marketscan Medicaid Database to explore clinical attributes, utilization, and spending among children with cancer who were Medicaid enrollees. Eligible patients included children (ages 0–18 years) with cancer (Clinical Risk Group 8). Healthcare utilization and spending (per member per month, PMPM) were assessed overall and across specific healthcare services. Results Children with cancer (n = 5,405) represent less than 1% of the 1,516,457 children with medical complexity in the dataset. Children with cancer had high services use: laboratory/radiographic testing (93.0%), outpatient specialty care (83.4%), outpatient therapy/treatment (53.4%), emergency department (43.7%), hospitalization (31.5%), home healthcare (9.5%). PMPM spending for children with cancer was $3,706 overall and $2,323 for hospital care. Conclusion Children with cancer have high healthcare resource use and spending. Differences in geographic distribution of services for children with cancer and the trajectory of spending over the course of therapy are areas for future investigation aimed at lowering costs of care without compromising on health outcomes.Item Hospital discharges for fever and neutropenia in pediatric cancer patients: United States, 2009(2015) Mueller, Emily L.; Walkovich, Kelly J.; Mody, Rajen; Gebremariam, Achamyeleh; Davis, Matthew M.; Department of Pediatrics, Indiana University School of MedicineBackground Fever and neutropenia (FN) is a common complication of pediatric cancer treatment, but hospital utilization patterns for this condition are not well described. Methods Data were analyzed from the Kids’ Inpatient Database (KID), an all-payer US hospital database, for 2009. Pediatric FN patients were identified using: age ≤19 years, urgent or emergent admit type, non-transferred, and a combination of ICD-9-CM codes for fever and neutropenia. Sampling weights were used to permit national inferences. Results Pediatric cancer patients accounted for 1.5 % of pediatric hospital discharges in 2009 (n = 110,967), with 10.1 % of cancer-related discharges meeting FN criteria (n = 11,261). Two-fifths of FN discharges had a “short length of stay” (SLOS) of ≤3 days, which accounted for approximately $65.5 million in hospital charges. Upper respiratory infection (6.0 %) and acute otitis media (AOM) (3.7 %) were the most common infections associated with SLOS. Factors significantly associated with SLOS included living in the Midwest region (OR = 1.65, 1.22–2.24) or West region (OR 1.54, 1.11–2.14) versus Northeast, having a diagnosis of AOM (OR = 1.39, 1.03–1.87) or viral infection (OR = 1.63, 1.18–2.25) versus those without those comorbidities, and having a soft tissue sarcoma (OR = 1.47, 1.05–2.04), Hodgkin lymphoma (OR = 2.33, 1.62–3.35), or an ovarian/testicular tumor (OR = 1.76, 1.05–2.95) compared with patients without these diagnoses. Conclusion FN represents a common precipitant for hospitalizations among pediatric cancer patients. SLOS admissions are rarely associated with serious infections, but contribute substantially to the burden of hospitalization for pediatric FN.Item Impact of Paired Central and Peripheral Blood Cultures in Children With Cancer(Wolters Kluwer, 2022-01) Burcham, Megan D.; Cochrane, Anneli R.; Wood, James B.; Mueller, Emily L.; Pediatrics, School of MedicineChildren with cancer require central venous access which carries risk for line-related infections. The necessity of peripheral and central blood cultures is debated for those with fevers. We evaluated and described results for first episode of paired blood cultures from children with cancer who have a central venous line using retrospective database. Blood culture results, laboratory data, and medical outcomes were included. Descriptive analyses of blood culture results and clinical data were performed. There were 190 episodes of paired positive blood cultures with 167 true positive episodes. Of the true positive episodes, 104 (62.3%) were positive in both central and peripheral cultures, 42 (25.1%) were positive in central only cultures, and 21 (12.6%) were positive in peripheral cultures only. Intensive care unit admission within 48 hours after blood cultures (n=33) differed significantly: 28.7% for both central and peripheral, 10% for central only, and 0% for peripheral only (P=0.009). Central line removal (n=34) differed by type of positivity but was not significant: 22.1% for both central and peripheral, 23.8% for central only, and 4.8% for peripheral only (P=0.15). Peripheral blood cultures provided important medical information yet had differences in short-term clinical outcomes. Further evaluation of medical decision making is warranted.