Browsing by Subject "Supportive care"
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Item Addressing unmet needs for people with cancer cachexia: recommendations from a multistakeholder workshop(Wiley, 2022-04) Garcia, Jose M.; Dunne, Richard F.; Santiago, Kristen; Martin, Lisa; Birnbaum, Morris J.; Crawford, Jeffrey; Hendifar, Andrew E.; Kochanczyk, Martin; Moravek, Cassadie; Piccinin, Doris; Picozzi, Vincent; Roeland, Eric J.; Selig, Wendy K.D.; Zimmers, Teresa A.; Surgery, School of MedicineItem 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 Corrigendum: Polypharmacy to Mitigate Acute and Delayed Radiation Syndromes(Frontiers Media, 2021-08-25) Gasperetti, Tracy; Miller, Tessa; Gao, Feng; Narayanan, Jayashree; Jacobs, Elizabeth R.; Szabo, Aniko; Cox, George N.; Orschell, Christie M.; Fish, Brian L.; Medhora, Meetha; Medicine, School of Medicine[This corrects the article DOI: 10.3389/fphar.2021.634477.].Item Music Therapy for Children with Oncology & Hematological Conditions and Their Families: Advancing the Standards of Psychosocial Care(Sage, 2022) Knott, David; Krater, Caitlin; MacLean, Jessica; Robertson, Kim; Stegenga, Kristin; Robb, Sheri L.; School of NursingBackground: Diagnosis and treatment of cancer and blood disorders in childhood, adolescence and young adulthood has a significant impact on patients and families. The Psychosocial Standards of Care project, initiated in 2012, resulted in 15 Psychosocial Standards (PSS) that guide the care patients and families receive throughout treatment. As members of the multidisciplinary psychosocial care team, music therapists play an important role in the advancing the PSS. Most surveys have focused on other commonly provided services (e.g., social work, child life), leaving gaps in our understanding about the availability and use of music therapy services to advance PSS. This paper offers an initial description of how music therapy services contribute to the provision of care under these Standards. Methods: We analyze how music therapy services promote PSS through synthesis of a music therapy clinical practice survey, published literature, and scope of practice documents. A brief overview of music therapy services structure, PSS that music therapy services currently address, and two clinical program descriptions are included. Results: Music therapy services address 9 of the 15 PSS and are well integrated within the larger program of psychosocial care. Findings suggest integration of music therapy services can help ensure personalized, comprehensive care and efficient use of often-limited psychosocial care resources. Discussion: Nurses, as members of the psychosocial and medical teams are uniquely positioned to identify patient and family care needs and refer patients for services. Understanding how music therapy services address PSS and most importantly, the needs of patients and families, will optimize their care.Item Polypharmacy to Mitigate Acute and Delayed Radiation Syndromes(Frontiers Media, 2021-05-17) Gasperetti, Tracy; Miller, Tessa; Gao, Feng; Narayanan, Jayashree; Jacobs, Elizabeth R.; Szabo, Aniko; Cox, George N.; Orschell, Christie M.; Fish, Brian L.; Medhora, Meetha; Medicine, School of MedicineThere is a need for countermeasures to mitigate lethal acute radiation syndrome (ARS) and delayed effects of acute radiation exposure (DEARE). In WAG/RijCmcr rats, ARS occurs by 30-days following total body irradiation (TBI), and manifests as potentially lethal gastrointestinal (GI) and hematopoietic (H-ARS) toxicities after >12.5 and >7 Gy, respectively. DEARE, which includes potentially lethal lung and kidney injuries, is observed after partial body irradiation >12.5 Gy, with one hind limb shielded (leg-out PBI). The goal of this study is to enhance survival from ARS and DEARE by polypharmacy, since no monotherapy has demonstrated efficacy to mitigate both sets of injuries. For mitigation of ARS following 7.5 Gy TBI, a combination of three hematopoietic growth factors (polyethylene glycol (PEG) human granulocyte colony-stimulating factor (hG-CSF), PEG murine granulocyte-macrophage-CSF (mGM-CSF), and PEG human Interleukin (hIL)-11), which have shown survival efficacy in murine models of H-ARS were tested. This triple combination (TC) enhanced survival by 30-days from ∼25% to >60%. The TC was then combined with proven medical countermeasures for GI-ARS and DEARE, namely enrofloxacin, saline and the angiotensin converting enzyme inhibitor, lisinopril. This combination of ARS and DEARE mitigators improved survival from GI-ARS, H-ARS, and DEARE after 7.5 Gy TBI or 13 Gy PBI. Circulating blood cell recovery as well as lung and kidney function were also improved by TC + lisinopril. Taken together these results demonstrate an efficacious polypharmacy to mitigate radiation-induced ARS and DEARE in rats.Item Rates of Influenza and Pneumococcal Vaccination and Correlation With Survival in Multiple Myeloma Patients(Elsevier, 2023) Thompson, Michael A.; Boccadoro, Mario; Leleu, Xavier; Vela-Ojeda, Jorge; van Rhee, Frits; Weisel, Katja C.; Rifkin, Robert M.; Usmani, Saad Z.; Hájek, Roman; Cook, Gordon; Abonour, Rafat; Armour, Mira; Morgan, Kathryn E.; Yeh, Su-Peng; Costello, Caitlin L.; Berdeja, Jesus G.; Davies, Faith E.; Zonder, Jeffrey A.; Lee, Hans C.; Omel, Jim; Spencer, Andrew; Terpos, Evangelos; Hungria, Vania T. M.; Puig, Noemi; Fu, Chengcheng; Ferrari, Renda H.; Ren, Kaili; Stull, Dawn Marie; Chari, Ajai; Medicine, School of MedicineBackground: Infections are a common reason for hospitalization and death in multiple myeloma (MM). Although pneumococcal vaccination (PV) and influenza vaccination (FV) are recommended for MM patients, data on vaccination status and outcomes are limited in MM. Materials and methods: We utilized data from the global, prospective, observational INSIGHT MM study to analyze FV and PV rates and associated outcomes of patients with MM enrolled 2016-2019. Results: Of the 4307 patients enrolled, 2543 and 2500 had study-entry data on FV and PV status. Overall vaccination rates were low (FV 39.6%, PV 30.2%) and varied by region. On separate multivariable analyses of overall survival (OS) by Cox model, FV in the prior 2 years and PV in the prior 5 years impacted OS (vs. no vaccination; FV: HR, 0.73; 95% CI, 0.60-0.90; P = .003; PV: HR, 0.51; 95% CI, 0.42-0.63; P < .0001) when adjusted for age, region, performance status, disease stage, cytogenetics at diagnosis, MM symptoms, disease status, time since diagnosis, and prior transplant. Proportions of deaths due to infections were lower among vaccinated versus non-vaccinated patients (FV: 9.8% vs. 15.3%, P = .142; PV: 9.9% vs. 18.0%, P = .032). Patients with FV had generally lower health resource utilization (HRU) versus patients without FV; patients with PV had higher or similar HRU versus patients without PV. Conclusion: Vaccination is important in MM and should be encouraged. Vaccination status should be recorded in prospective clinical trials as it may affect survival.Item Side Effects With a Focus on Lymphadenopathy Following COVID-19 Vaccination in Pediatric and AYA Oncology Patients(Wolters Kluwer, 2023) Belsky, Jennifer A.; Carroll, Whitney R.; Xu, Guang; Jacob, Seethal A.; Pediatrics, School of MedicineThe Coronavirus Disease 2019 (COVID-19) pandemic led to the swift development of multiple vaccinations. Vaccine side effects were well-documented in the healthy adult cohort and included fever and lymphadenopathy, however, side effects in the pediatric immunocompromised population have not been reported. This retrospective study investigated vaccine-eligible children and adolescent young adult oncology patients 12 to 35 years old. We found uncommon, mild, and self-limiting side effects among pediatric cancer patients and survivors. This data will help guide pediatric and AYA oncologists in providing anticipatory guidance and serve as a guide to managing lymphadenopathy as a potential confounder of malignancy.