A Novel Maturation Equation For Hepatic Clearance Across Preterm, Term Neonates, Children, And Adults: Application To Paracetamol And Its Metabolite,
2025
Leiden Academic Centre for Drug Research
A Novel Maturation Equation For Hepatic Clearance Across Preterm, Term Neonates, Children, And Adults: Application To Paracetamol And Its Metabolite, Yunjiao Wu, Swantje Völler, Sebastiaan C. Goulooze, Karel Allegaert, Catherine M.T. Sherwin, Anne Van Rongen, Daniëlla W. E. Roofthooft, Sinno H.P. Simons, Dick Tibboel, Robert B. Flint, John N. Van Den Anker, Catherijne A.J. Knibbe
Pediatrics Faculty Publications
A preterm and term neonate to adult (PTNA) maturation equation was introduced recently to describe the glomerular filtration rate maturation from birth to adulthood for neonates of varying gestational age. This study aims to evaluate the newly developed PTNA equation against common maturation approaches like allometric scaling (AS0.75), the AS0.75 plus postmenstrual age (PMA)-based Emax (AS0.75 + PMA) equation, and the bodyweight dependent exponent equation (BDE) for the maturation of three hepatic pathways of paracetamol (PCM) from preterm and term neonates up to adults. A population pharmacokinetic analysis was conducted with pooled plasma and urine data of PCM, PCM-glucuronide (PCM-GLU), …
Acceptability Of Corticosteroid Use In The Treatment Of Infant Bronchiolitis: Utilizing The Theoretical Framework Of Acceptability To Design Research Instruments,
2025
University of Nebraska Medical Center
Acceptability Of Corticosteroid Use In The Treatment Of Infant Bronchiolitis: Utilizing The Theoretical Framework Of Acceptability To Design Research Instruments, Caroline R. Smetanka
Capstone Experience: Master of Public Health
Bronchiolitis is the leading cause of hospitalization among infants under six months, yet treatment remains largely supportive due to clinical guidelines that discourage pharmacologic intervention. Recent research suggests that bronchiolitis is not a uniform condition, and a subgroup of infants (those classified within “Profile A”) may benefit from targeted corticosteroid therapy. However, these treatments remain outside current clinical guidelines, and their successful adoption depends on stakeholder acceptability. This Capstone project developed and refined four data collection instruments- two questionnaires and two interview guides- designed to assess how healthcare providers and caregivers perceive the acceptability of corticosteroid treatment for Profile A …
Factors Associated With Stillbirth In Four Selected Hospital Maternity Units: An Unmatched Case-Control Study In Eswatini,
2025
Aga Khan University
Factors Associated With Stillbirth In Four Selected Hospital Maternity Units: An Unmatched Case-Control Study In Eswatini, Phetsile Thwala, Abednego Ongeso, Rose Maina, Benard Mutwiri
School of Nursing & Midwifery, East Africa
Background: Stillbirth is a substantially under-recognized adverse pregnancy outcome that predominantly occurs in low-middle-income countries. In 2019, Eswatini’s stillbirth rate was 13.2 per 1,000 births, higher than global targets. However, there is limited research on stillbirths in Eswatini. This study analyzed factors associated with stillbirths among women giving birth in four selected hospitals.
Methods: A multi-center unmatched case-control study was conducted using secondary data sources from July 1 to December 31, 2021. Birth records of 268 stillbirths (cases) and 1,151 live births (controls) were selected using consecutive and systematic random sampling, respectively. A piloted data extraction tool was used to …
Categorizing Weight Growth Of Infants Born Before 32 Weeks' Gestation Using The 2023 Postnatal Growth Charts For Preterm Infants.,
2025
Children's Mercy Hospital
Categorizing Weight Growth Of Infants Born Before 32 Weeks' Gestation Using The 2023 Postnatal Growth Charts For Preterm Infants., Fu-Sheng Chou, Hung-Wen Yeh, Crystal Hsueh, Jing Zhang, Maria Fe B. Villosis, Karine Barseghyan, Ashwini Lakshmanan, Reese H. Clark
Manuscripts, Articles, Book Chapters and Other Papers
OBJECTIVE: To categorize growth and correlate growth categories with morbidities in infants born before 32 weeks of gestation.
STUDY DESIGN: This retrospective study categorized weight growth by correlating mean growth velocity (GV) with growth trajectory z-score changes (ΔGTZ ), as measured using 2023 Postnatal Growth Charts for Preterm Infants. The associations between weight categories and morbidities were assessed.
RESULTS: Weight gain of infants without morbidities was categorized into three groups based on correlating ΔGTZ with mean GV: slower ( ΔGTZ < -0.1), in-parallel ( ΔGTZ -0.1 to 0.3), and faster ( ΔGTZ > 0.3). The proportions of infants with and without morbidities in these categories were evaluated across two distinct cohorts, revealing similar …
Adenovirus Types In Us Children Hospitalized Or Seen In The Emergency Department With Acute Respiratory Illness, 2016-2019.,
2025
Children's Mercy Hospital
Adenovirus Types In Us Children Hospitalized Or Seen In The Emergency Department With Acute Respiratory Illness, 2016-2019., Tess Stopczynski, Varvara Probst, Adam Gailani, Justin Z. Amarin, Olla Hamdan, Haya Hayek, Laura S. Stewart, Herdi K. Rahman, Rangaraj Selvarangan, Jennifer E. Schuster, Christopher J. Harrison, Mary E. Moffatt, Marian G. Michaels, John V. Williams, Julie A. Boom, Leila C. Sahni, Vasanthi Avadhanula, Mary Allen Staat, Elizabeth P. Schlaudecker, Christina Quigley, Geoffrey A. Weinberg, Peter G. Szilagyi, Janet A. Englund, Eileen J. Klein, Aaron T. Curns, Heidi L. Moline, Ariana P. Toepfer, James D. Chappell, Andrew J. Spieker, Natasha B. Halasa
Manuscripts, Articles, Book Chapters and Other Papers
BACKGROUND: Human adenovirus (HAdV) is a common cause of pediatric acute respiratory illness (ARI), contributing to 5-13% of cases worldwide. Clinical manifestations vary by HAdV species and type; therefore, delineating type-specific disease presentations and understanding severity of specific HAdV types' disease may help develop targeted interventions.
METHODS: We conducted a multicenter, prospective study within the New Vaccine Surveillance Network to characterize HAdV types. Children < 18 years old with ARI were enrolled in the emergency department or inpatient setting at 7 US children's hospitals from 1 December 2016 to 30 November 2019. Respiratory specimens were collected and tested for HAdV and other viruses. Subsequently, typing was conducted on HAdV specimens using single-plex real-time PCR assays targeting sequences in the hexon gene. Comparisons between HAdV types were performed to determine differences in characteristics and outcomes. Generalized linear mixed effects models were used to evaluate severity.
RESULTS: Among the 1843 HAdV-positive cases, 1402 specimens (76%) were typed. The most common types detected were HAdV-C1 (n = 439), HAdV-C2 (n = 393), and HAdV-B3 (n = 221). Children with HAdV-B7 (n = 78) …
Elevated Serum Bile Acids Predict Poor Liver Outcomes In Children With Alagille Syndrome: Results From The Gala Study Group.,
2025
Children's Mercy Hospital
Elevated Serum Bile Acids Predict Poor Liver Outcomes In Children With Alagille Syndrome: Results From The Gala Study Group., Carla Fiorella Murillo Perez, Shannon M. Vandriel, Emmanuel M. Gonzales, Jian-She Wang, Li-Ting Li, Huiyu She, Irena Jankowska, Piotr Czubkowski, Dorota Gliwicz-Miedzińska, Emmanuel Jacquemin, Jérôme Bouligand, Lorenzo D'Antiga, Emanuele Nicastro, Björn Fischler, Henrik Arnell, Susan M. Siew, Michael Stormon, Kathleen M. Loomes, David A. Piccoli, Elizabeth B. Rand, James E. Squires, Saul J. Karpen, Rene Romero, Mureo Kasahara, Zerrin Önal, Étienne Sokal, Tanguy Demaret, Sabina Wiecek, Florence Lacaille, Dominique Debray, Winita Hardikar, Sahana Shankar, Pamela L. Valentino, Shikha S. Sundaram, Noelle H. Ebel, Jeffrey A. Feinstein, Orith Waisbourd-Zinman, Henry C. Lin, Nathalie Rock, Henkjan J. Verkade, M Kyle Jensen, Catalina Jaramillo, Kyung Mo Kim, Seak Hee Oh, Jernej Brecemiclj, Seema Alam, Giuseppe Indolfi, Niviann Blondet, Rima Fawaz, Silvia Nastasio, Pier Luigi Calvo, Gabriella Nebbia, Cigdem Arikan, Catherine Larson-Nath, Andréanne N. Zizzo, Thomas Damgaard Sandahl, Christos Tzivinikos, Nehal M. El-Koofy, Mohamed A. Elmonem, Amal A. Aqul, Wikrom Karnsakul, Pinar Bulut, Nanda Kerkar, Victorien M. Wolters, Amin J. Roberts, Helen M. Evans, Maria Camila Sanchez, Maria Lorena Cavalieri, Deirdre A. Kelly, Jane Hartley, Way Seah Lee, Christina Hajinicolaou, Chatmanee Lertudomphonwanit, Ryan T. Fischer, Jesus Quintero Bernabeu, Ruben E. Quiros-Tejeira, Cristina Targa Ferreira, Elisa Carvalho, John Eshun, Aglaia Zellos, Antal Dezsőfi, Raquel Borges Pinto, Kathleen Schwarz, Maria Rogalidou, Jennifer Garcia, María Legarda Tamara, Marisa Beretta, Quais Mujawar, Ermelinda Santos-Silva, Cristina Molera Busoms, Eberhard Lurz, Cristina Gonçalves, Carolina Jimenez-Rivera, Jesus M. Banales, Richard J. Thompson, Bettina E. Hansen, Binita M. Kamath, Global Alagille Alliance (Gala) Study Group
Manuscripts, Articles, Book Chapters and Other Papers
BACKGROUND AND AIM: Alagille syndrome (ALGS) is a rare disorder characterised by cholestasis and extrahepatic manifestations. Given the current era of ileal bile acid transporter (IBAT) inhibitor therapies that reduce serum bile acid (SBA) levels, we evaluated whether SBA predicts liver disease outcomes in ALGS.
METHODS: Patients were ascertained from the Global ALagille Alliance (GALA) cohort. A prognostic threshold of SBA 102 μmol/L was assessed as a time-dependent covariate in Cox regression analyses for native liver survival (NLS) and event-free survival (EFS), while adjusting for total bilirubin (TB) levels.
RESULTS: 570 GALA patients were included (348 [61%] male). There was …
Halo Gravity Traction And Temporary Internal Distraction,
2025
Children's Mercy Kansas City
Halo Gravity Traction And Temporary Internal Distraction, Nicholas D. Fletcher, Anson G. Bautista, Joshua S. Murphy, K Aaron Shaw
Manuscripts, Articles, Book Chapters and Other Papers
Severe pediatric spinal deformities may require staged correction strategies to mitigate neurologic risk and optimize cardiopulmonary outcomes. This paper reviews two adjunctive techniques—halo gravity traction (HGT) and temporary internal distraction (TID)—used in the management of rigid scoliosis. HGT enables gradual preoperative spinal elongation and coronal/sagittal realignment, improving pulmonary function and nutritional status while reducing the need for three-column osteotomies. TID offers an internal, staged distraction approach for patients contraindicated for external traction, allowing incremental correction via posterior instrumentation followed by definitive fusion. Clinical studies report Cobb angle reductions of 30–80 %, with low rates of neurologic complications when neuromonitoring and …
Trends In Hospital Resource Use For Children With Complex Chronic Conditions.,
2025
Children's Mercy Hospital
Trends In Hospital Resource Use For Children With Complex Chronic Conditions., Nathaniel D. Bayer, Matthew Hall, Maria Osipovich, John M. Morrison, Christian D. Pulcini, Jana C. Leary, Joanna E. Thomson, Tamara D. Simon, Dennis Z. Kuo, Jeffrey D. Colvin, Eyal Cohen, Jay G. Berry
Manuscripts, Articles, Book Chapters and Other Papers
IMPORTANCE: Despite a small prevalence, children with complex chronic conditions (CCCs) use substantial inpatient resources.
OBJECTIVE: To assess national trends in hospital discharges, bed days, and hospital charges for children with and without CCCs in the US from 2000 to 2022.
DESIGN, SETTING, AND PARTICIPANTS: This retrospective, repeated cross-sectional study used hospital discharge data from the Kids' Inpatient Database (KID) from the years 2000, 2003, 2006, 2009, 2012, 2016, 2019, and 2022 for US children aged 0 to 18 years, excluding uncomplicated newborn discharges.
EXPOSURE: Presence of 0, 1, 2, or 3 or more CCCs.
MAIN OUTCOMES AND MEASURES: Trends …
Left And Right Ventricular Strain Mechanics In Fetal Tachyarrhythmia.,
2025
Children's Mercy Hospital
Left And Right Ventricular Strain Mechanics In Fetal Tachyarrhythmia., Rukmini Komarlu, Janelle R. Noel-Macdonnell Phd, Neha Chellu, Geetha Haligheri
Manuscripts, Articles, Book Chapters and Other Papers
Introduction: Assessment of myocardial function in fetuses with supraventricular tachyarrhythmia is challenging. Speckle-tracking echocardiography (STE) is a newer sensitive method to assess ventricular systolic function. We sought to assess left (LV) and right (RV) ventricular myocardial strain mechanics in fetuses with tachyarrhythmia and hypothesized that strain mechanics are impaired in this patient population even after conversion to sinus rhythm.
METHODS: This was a single-center retrospective review. LV and RV strain parameters were assessed using STE in tachyarrhythmia and after conversion to sinus rhythm and, compared to gestational age (GA), matched control fetuses in sinus rhythm.
RESULTS: Eighteen fetuses with tachyarrhythmia …
Assessing Hesitancy Towards Paediatric Vaccines Among Healthcare Professionals: A Descriptive Cross-Sectional Study From The United Arab Emirates,
2025
Jefferson Abington Hospital
Assessing Hesitancy Towards Paediatric Vaccines Among Healthcare Professionals: A Descriptive Cross-Sectional Study From The United Arab Emirates, Drishti D. Kampani, Kamel A. Samara, Mohammed Mahfouz, Ahmad Hisham Al-Anoud, Amna Basel Al-Beer, Humaid Altaheri, Hiba Jawdat Barqawi, Eman Abu-Gharbieh
Abington Jefferson Health Papers
BACKGROUND: Vaccination is one of the most effective public health interventions, preventing millions of deaths globally. However, vaccine hesitancy persists, not only among the public, but also among healthcare professionals (HCPs), who serve as key sources of vaccine information. This study assesses HCPs' vaccination attitudes and estimates the prevalence and determinants of vaccine hesitancy in the UAE.
DESIGN AND METHODS: This cross-sectional, descriptive study surveyed HCPs across the UAE from March to October 2024 using a 57-item questionnaire adapted from previous literature. Univariate, bivariate (chi-squared test), and multivariate (logistic regression) analyses were conducted.
RESULTS: HCPs demonstrated generally positive attitudes towards …
Pengaruh Deep Neck Flexor Exercise Terhadap Neck Pain Non-Specific Pada Penjahit,
2025
Poltekkes Kemenkes Surakarta
Pengaruh Deep Neck Flexor Exercise Terhadap Neck Pain Non-Specific Pada Penjahit, Salwa Maylani, Fendy Nugroho, Yoni Rustiana
Jurnal Fisioterapi Terapan Indonesia
Background: tailors tend to bow for a long time which results in excessive activation of the postural muscles in maintaining the position of the neck which causes weakness, decreased activity, and muscle imbalance which results in pain in the neck area. In overcoming these disorders, the intervention that can be given is deep neck flexor exercise. Objective: to determine the effect of deep neck flexor exercise on non-specific neck pain in tailors. Methods: this study used an experimental one group pre and post test with control design which was carried out in May-July 2024 at PT. Iskandar Indah Printing Textile …
Kecemasan Orang Tua Yang Memiliki Anak Disabilitas Intelektual Di Slbn 4 Jakarta,
2025
Universitas Indonesia
Kecemasan Orang Tua Yang Memiliki Anak Disabilitas Intelektual Di Slbn 4 Jakarta, Hermito Gidion, Purnama Betty Sitorus, Zahrah Nabila Humayrah
Jurnal Fisioterapi Terapan Indonesia
Anxiety is a common mental condition characterized by feelings of nervousness, fear, and restlessness that can interfere with daily life. Parents who have children with intellectual disabilities often experience anxiety due to various factors, including psychological pressure and high emotional burdens. The aim of this study was to analyze the level of anxiety among parents who have children with intellectual disabilities at SLBN 4 Jakarta and to identify the relationship between predisposing and precipitating factors and the level of anxiety. This research employed a quantitative descriptive approach with a cross-sectional design. The sample consisted of 81 parents at SLBN 4 …
Hubungan Alignment Knee Joint Terhadap Kecepatan Berlari Pada Anak Usia 4-6 Tahun,
2025
Indonusa Esa Unggul University
Hubungan Alignment Knee Joint Terhadap Kecepatan Berlari Pada Anak Usia 4-6 Tahun, Rifka Alifia Haura, Miranti Yolanda Anggita, Abdul Chalik Meidian
Jurnal Fisioterapi Terapan Indonesia
Alignment Knee joint alignment is a critical component in the biomechanical analysis of the body, particularly in locomotor activities such as running. Imbalance or malalignment in the knee joint can disrupt movement patterns and increase the risk of musculoskeletal injuries. In pediatric physiotherapy, early identification of lower limb posture is essential to support optimal gross motor development. This study aims to examine the relationship between knee joint alignment and running speed in children aged 4–6 years. A crosssectional design was used, involving 45 children who met the inclusion criteria. Measurement of knee alignment was performed using a goniometer to assess …
Pengaruh Biofeedback Terhadap Program Peningkatan Kekuatan Otot,
2025
Poltekkes Kemenkes Surakarta
Pengaruh Biofeedback Terhadap Program Peningkatan Kekuatan Otot, Aditya Johan Romadhon, Fendy Nugroho, Pajar Haryatno
Jurnal Fisioterapi Terapan Indonesia
Background: In sport the muscle fiber composition surely affect athlete performances, selective training technic and using advance technology may improve and set a new standards for athlete optimal performances, technology innovation such as computer simulator has been use to generate realistic match simulation in several sport, but the technology is not cheap that many sport clubs can afford, so biofeedback may become innovation to improve athletes performance by monitoring muscle activation to achieve selective muscle contraction in muscle strengthening programs. Objective: The objective of this study was to evaluate whether auditory feedback as biofeedback can improve muscle activation in a …
Emergent Bedside Re-Sternotomy: An Innovative Simulation Model For Training Pediatric Cardiac Intensive Care Teams,
2025
The University of Texas Rio Grande Valley
Emergent Bedside Re-Sternotomy: An Innovative Simulation Model For Training Pediatric Cardiac Intensive Care Teams, Toluwani Akinpelu, Nikhil R. Shah, Mohammed Alhendy, Malarvizhi Thangavelu, Karen Weaver, Nicole Muller, James Mcelroy, Utpal Bhalala
School of Medicine Publications
Introduction: Cardiac tamponade after cardiac surgery is a life-threatening event that requires simultaneous resuscitation and emergent re-sternotomy by the intensive care team. A simulated scenario using an innovative mannequin with sternotomy wound has the capability of reproducing cardiac arrest associated with postoperative tamponade. We evaluated the validity of this mannequin to investigate the confidence level and crisis resource management skills of the team during bedside re-sternotomy to manage postoperative cardiac tamponade.
Methods: The simulation scenario was developed using the sternotomy mannequin for a pediatric cardiac intensive care unit (CICU) team. The case involved a 3-year-old male, intubated, mechanically ventilated after …
Microrna Profiling Identifies Diagnostic And Prognostic Markers In Pediatric Sarcoma.,
2025
Children's Mercy Hospital
Microrna Profiling Identifies Diagnostic And Prognostic Markers In Pediatric Sarcoma., Terrie Flatt, Leonid M. Yermakov, Shreeram Akilesh, Eleanor Y. Chen, Elizabeth Gonzalez, Alejandro Parrales, Marta Zapata-Tarres, Rocio Cardenas-Cardos, Liliana Velasco-Hidalgo, Celso Corcuera-Delgado, Rodolfo Rodriguez-Jurado, Lillia García-Rodríguez, Midhat S. Farooqi, Atif Ali Ahmed
Manuscripts, Articles, Book Chapters and Other Papers
BACKGROUND: MicroRNAs (miRNAs) function as post-transcriptional gene expression regulators and influence the development and progression of several cancers, yet their roles in pediatric sarcomas remain poorly defined.
METHODS: RNA extracted from formalin-fixed paraffin-embedded tumor tissue scrolls of 108 pediatric tumors, including 32 osteosarcoma (OS), 26 Ewing's sarcoma (EWS), and 50 rhabdomyosarcoma (RMS) cases, were analyzed for microRNA expression using the NanoString multiplex nCounter platform that yielded information on 827 human miRNAs. The expression of candidate miRNAs was validated with in situ hybridization (miRNA-ISH) and QuPath quantification on tissue microarray slides comprising an independent set of 48 OS, 17 EWS, and …
Addressing The Burden Of Prematurity And Its Prevention In Developing Countries: Is It Time To Act Now?,
2025
Datta Meghe Institute of Higher Education and Research
Addressing The Burden Of Prematurity And Its Prevention In Developing Countries: Is It Time To Act Now?, Mahaveer Singh Lakra, Amar Taksande, Revat J. Meshram, Ashwini Lakra, Amit Kumar, Deepak Gandhi, Roshan Prasad, Mayur Wanjari
Chulalongkorn Medical Journal
Around 3.5 million preterm births occur in India annually, accounting for about 25% of all preterm births worldwide. Prematurity poses a significant burden world-wide but leaves a special impact on the families and health systems of low-socioeconomic countries where easy and universal access to adequate health services is compromised. Premature birth imposes a significant risk of neonatal death among all under-fives due to organ immaturity, sepsis, and respiratory distress syndrome. Efforts to address prematurity on a global scale involve a multifaceted approach, including improving access to quality prenatal care, enhancing neonatal care services, and implementing public health interventions to reduce …
Possible Involvement Of Keratinocyte-Derived Microvesicle Particles In Human Photosensitivity Disorders,
2025
Wright State University - Main Campus
Possible Involvement Of Keratinocyte-Derived Microvesicle Particles In Human Photosensitivity Disorders, Risha Annamraju, Madison S. Owens, Anita Thyagarajan, Danielle A. Corbin, Catherine M.T. Sherwin, Jade Bryant, Garrett W. Fisher, Winston R. Owens, Alycia Ketter, Craig A. Rohan, Michael G. Kemp, Robyn K. Crow, Jeffrey B. Travers
Pediatrics Faculty Publications
BACKGROUND: Previous murine studies have implicated acid sphingomyelinase-(aSMase) generated subcellular microvesicle particles (MVP) in photosensitivity. Objective: The current double-blinded placebo-controlled studies examined if a single localized ultraviolet B radiation (UVB) treatment generated more MVP in human subjects with self-identified photosensitivity versus normal controls. A topical 4% formulation of the aSMase inhibitor imipramine applied immediately after UVB blocked the MVP release and erythema responses. Erythema responses at 24 and 72 h in response to multiple UVB fluences and minimal erythema doses (MED) at 24 h and effects of imipramine were also tested.
RESULTS: Small cohorts of 10 adult self-identified photosensitive subjects …
Neutrophil Lymphocyte Ratio As A Marker Of Skin Disease Activity In Older Children With Juvenile Dermatomyositis,
2025
Thomas Jefferson University
Neutrophil Lymphocyte Ratio As A Marker Of Skin Disease Activity In Older Children With Juvenile Dermatomyositis, Shreya Swaminathan, Nidhi Naik, Susan Shenoi, Sarah Vandenbergen, Jessica L. Turnier, Zilan Zheng, Jessica Neely, James S. Andrews, Christian Lood
Student Papers, Posters & Projects
BACKGROUND: Neutrophils contribute to the pathogenesis of many autoimmune diseases. While the neutrophil to lymphocyte ratio (NLR) is associated with disease activity in adult dermatomyositis, its clinical utility in juvenile dermatomyositis (JDM) is unknown.
METHODS: Demographic, medication use, autoantibody profile, disease activity markers, and laboratory data from 97 JDM patients was collected using retrospective chart review. Patients were age-stratified (0–9 vs. 9–21 years of age), as white blood cell count stabilizes at 9 years. The relationships between NLR with JDM disease activity measures were analyzed using spearman’s correlation.
RESULTS: Patients were primarily white (56.7%) and female (71.1%). Older children had …
Design And Refinement Of Cybercelltm, A Virtual Reality Health Education Program For Adolescents And Young Adults With Sickle Cell Disease,
2025
Thomas Jefferson University
Design And Refinement Of Cybercelltm, A Virtual Reality Health Education Program For Adolescents And Young Adults With Sickle Cell Disease, Aimee Hildenbrand, Melanie Pitone, Benjamin Bear, Corinna L. Schultz, Sherman Finch, Danielle Morley, Stephanie Hubbard, Alyssa Decino, Melissa A. Alderfer, Lori E. Crosby, Fredric Freeman
Department of Pediatrics Faculty Papers
For people living with sickle cell disease (SCD), the risk for disease complications and premature death rises sharply in adolescence and young adulthood, when chronic organ damage is compounded by reduced preventive care. To make informed health care decisions, adolescents and young adults (AYAs) require effective education about their health condition and treatment options. We aimed to systematically design and develop a user-centered, evidence-based virtual reality (VR) health education program to optimize the use of SCD therapies among AYAs with SCD. We engaged a diverse team including AYAs with SCD and their caregivers, multidisciplinary SCD clinicians and researchers, patient education …
