Article
Pediatrics
Jerome Lichtle, Emmanuel Devouche, Naomi Downes, Laurent Mottron, Emilie Cappe
Summary: This study validates the acceptability and reliability of the PedsQL 4.0 questionnaire in French children aged 2 to 4 years. The results show good acceptability and internal consistency of the questionnaire. Factor analysis reveals an alternative 2-factor structure. The total score and emotional scale score are recommended for use in French children aged 2 to 4 years.
EUROPEAN JOURNAL OF PEDIATRICS
(2023)
Review
Multidisciplinary Sciences
Matthew Smyth, Kevan Jacobson
Summary: The study utilized PedsQL(TM) to assess the quality of life of children and adolescents with different disease cohorts, revealing lower QoL scores in IBD patients, especially those with active disease.
Article
Pediatrics
Benjamin Saul Raywood Allin, Charles Opondo, Timothy John Bradnock, Simon Edward Kenny, Jennifer J. Kurinczuk, Gregor M. Walker, Marian Knight
Summary: This study describes the core outcomes of Hirschsprung's disease (HD) in primary school-aged children in the UK and Ireland, revealing high rates of fecal incontinence, unplanned procedures, and low quality of life scores. It highlights the importance of clinicians addressing the bladder, bowel, and psychological problems experienced by children with HD.
ARCHIVES OF DISEASE IN CHILDHOOD
(2021)
Article
Hematology
Natalie L. Wu, Amanda Phipps, Kevin R. Krull, Karen L. Syrjala, Paul A. Carpenter, Laura S. Connelly-Smith, Mary E. Flowers, Elizabeth F. Krakow, Masumi Ueda Oshima, Stephanie J. Lee, Eric J. Chow
Summary: Survivors of hematopoietic cell transplant (HCT) generally have good neurocognitive function and quality of life, but those with hearing issues and sleep impairments are more likely to experience lower quality of life and impaired neurocognitive function.
Article
Medicine, General & Internal
Carolyn A. McCarty, Douglas F. Zatzick, Lyscha A. Marcynyszyn, Jin Wang, Robert Hilt, Thomas Jinguji, Celeste Quitiquit, Sara P. D. Chrisman, Frederick P. Rivara
Summary: This randomized clinical trial examined the effectiveness of collaborative care treatment for adolescents with persistent postconcussive symptoms in improving symptoms, quality of life, anxiety, and depressive symptoms over 1 year compared to usual care. The findings suggest that collaborative care intervention led to fewer symptoms and better quality of life for adolescents over the course of 1 year. Additionally, delivering the intervention through telehealth broadened the reach of treatment.
Article
Health Care Sciences & Services
Deena R. Levine, Rebecca Epperly, Griffin Collins, Aimee C. Talleur, Belinda Mandrell, Michele Pritchard, Suraj Sarvode Mothi, Chen Li, Zhaohua Lu, Justin N. Baker
Summary: This study aimed to evaluate patient and parent attitudes toward early palliative care (PC) integration in pediatric hematopoietic cell transplantation (HCT). The results showed that the majority of participants believed that quality of life should be prioritized from the start of HCT, and most expressed a positive attitude towards early PC consultation.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Article
Public, Environmental & Occupational Health
Dalia Al-Abdulrazzaq, Doaa Khalifa, Taiba Alqaisi, Fatima Al-Juailla, Fouzeyah Othman, Sarah Qabazard, Hessa Al-Kandari
Summary: This study compares the health-related quality of life (HRQoL) of children and adolescents with type 1 diabetes (T1D) who were affected by COVID-19 and those who were not. The results show differences between parent-proxy reports and self-reports, with parents generally perceiving lower HRQoL for their children. COVID-19-affected children had lower HRQoL scores in certain areas, particularly in diabetes symptoms.
FRONTIERS IN PUBLIC HEALTH
(2022)
Article
Pediatrics
Shiyi Dai, Kaiying Yang, Tong Qiu, Jiangyuan Zhou, Xuepeng Zhang, Siyuan Chen, Lizhi Li, Yi Ji
Summary: This study aimed to determine the health-related quality of life (HRQOL) in children with Kaposiform hemangioendothelioma (KHE). The study found that children with KHE have a poor HRQOL, with activity dysfunction and KMP being risk factors for poor HRQOL. However, lesion size, lesion location, and education level of parents were not related to HRQOL.
FRONTIERS IN PEDIATRICS
(2022)
Review
Genetics & Heredity
Susanne Wehrli, Marianne Rohrbach, Markus Andreas Landolt
Summary: This meta-analysis aimed to analyze the quality of life (QoL) in children and adults with osteogenesis imperfecta (OI). The results showed that children with OI had significantly lower QoL in emotional, school, and social functioning compared to controls. Similarly, adults with OI had lower QoL in both physical and mental components. Further research is needed to explore QoL in children and adolescents and to investigate the association between OI phenotype severity and mental health in adults.
ORPHANET JOURNAL OF RARE DISEASES
(2023)
Editorial Material
Pediatrics
Emily M. Bucholz, Lynn A. Sleeper, Renee Sananes, Cheryl L. Brosig, Caren S. Goldberg, Sara K. Pasquali, Jane W. Newburger
Summary: Research showed that lower socioeconomic status and maternal education were linked to early delays in communication and problem-solving, as well as progressive delays in problem-solving and fine motor skills over time in children with hypoplastic left heart syndrome.
JOURNAL OF PEDIATRICS
(2021)
Article
Pediatrics
Elke De Bruyne, Sunny Eloot, Johan Vande Walle, Ann Raes, Wim Van Biesen, Liesbet Goubert, Tine Vervoort, Evelien Snauwaert, Eline Van Hoecke
Summary: This study translated and evaluated the Dutch version of the PedsQL(TM) 3.0 End Stage Renal Disease Module, showing good validity and reliability. Further testing with a larger study group is recommended for conclusive results on its psychometric qualities.
PEDIATRIC NEPHROLOGY
(2022)
Article
Medicine, Research & Experimental
Romaine F. Johnson, Ashley Brown, Rebecca Brooks
Summary: This study measured the quality of life among families with children with tracheostomies and found that their QOL scores were similar to other medically fragile children, with tracheostomy patients reporting superior scores in communication.
Article
Medicine, General & Internal
Rudmila Rashid, Whitley W. Aamodt, Sarah Horn, Nabila Dahodwala
Summary: This study assessed the impact of caregiver depression symptoms on the quality of life, emergency department visits, and hospitalizations of patients with Parkinson's disease. The results showed that patients with caregivers experiencing more severe depression symptoms had lower quality of life and more frequent emergency department visits, but not more hospitalizations.
Article
Nutrition & Dietetics
Soili Alanne, Ella Koivuniemi, Eliisa Loyttyniemi, Kirsi Laitinen
Summary: Supporting a child's health-promoting lifestyle is a valuable investment for their future health and quality of life. A study in Finland aims to compare healthy elementary school-aged children's and parents' reports of the child's health-related quality of life, and its relation to lifestyle markers.
Article
Gastroenterology & Hepatology
John E. Pandolfino, Dustin A. Carlson, Josie McGarva, Peter J. Kahrilas, Michael Vaezi, David Katzka, Tiffany H. Taft
Summary: The study developed a new Achalasia Patient-Reported Outcomes (APRO) Questionnaire, identified three subscales through investigation of patients with normal motility and achalasia, and found that symptom anxiety and hypervigilance moderate the relationship between APRO and quality of life.
ALIMENTARY PHARMACOLOGY & THERAPEUTICS
(2022)
Article
Endocrinology & Metabolism
Jaclyn Lennon Papadakis, Lindsay M. Anderson, Kimberly Garza, Marissa A. Feldman, Jenna B. Shapiro, Meredyth Evans, Laurie Gayes Thompson, Jill Weissberg-Benchell
ENDOCRINOLOGY AND METABOLISM CLINICS OF NORTH AMERICA
(2020)
Article
Pediatrics
Alison L. Miller, Sharon L. Lo, Dana Albright, Joyce M. Lee, Christine M. Hunter, Katherine W. Bauer, Rosalind King, Katy M. Clark, Kiren Chaudhry, Niko Kaciroti, Benjamin Katz, Emily M. Fredericks
Article
Pediatrics
Dawn Dore-Stites, M. James Lopez, John C. Magee, John Bucuvalas, Kathleen Campbell, Victoria Shieck, Andrew Well, Emily M. Fredericks
PEDIATRIC TRANSPLANTATION
(2020)
Article
Endocrinology & Metabolism
Deborah A. Ellis, Malcolm P. Cutchin, Thomas Templin, April Idalski Carcone, Meredyth Evans, Jill Weissberg-Benchell, Colleen Buggs-Saxton, Claudia Boucher-Berry, Jennifer L. Miller, Mouhammad Al Wazeer, Jamil Gharib, Yasir Mehmood, Jessica Worley
Summary: This study examined the associations between family conflict, neighborhood adversity, and glycemic outcomes in young Black adolescents with type 1 diabetes. It found that both family conflict and neighborhood adversity had significant, independent effects on glycemic control, highlighting the importance of social determinants of health in impacting diabetes-related health outcomes.
PEDIATRIC DIABETES
(2021)
Article
Endocrinology & Metabolism
Anthony T. Vesco, Kelsey R. Howard, Lindsay M. Anderson, Jaclyn L. Papadakis, Korey K. Hood, Jill Weissberg-Benchell
Summary: The study investigated the indirect effects of anxiety on A1C among adolescents with T1D, revealing that diabetes distress mediated the relationship between anxiety and A1C, while automatic negative thinking did not show this mediation. Anxiety had a significant indirect effect on A1C through diabetes distress.
CANADIAN JOURNAL OF DIABETES
(2021)
Article
Endocrinology & Metabolism
Ananta Addala, Sakinah C. Suttiratana, Jessie J. Wong, Monica S. Lanning, Katharine D. Barnard, Jill Weissberg-Benchell, Lori M. Laffel, Korey K. Hood, Diana Naranjo
Summary: The study identified five thematic levels of cost for diabetes technology uptake, with cost considerations extending beyond finances to include time, cost to society, morality and interpersonal relationships. Cost reflected an important moral principle tied to the shared desire for equitable access to diabetes technology.
Article
Pediatrics
Melissa K. Cousino, Carmel Bogle, Heang M. Lim, Amanda D. McCormick, Julie Sturza, Emily M. Fredericks, John C. Magee, Elizabeth D. Blume
Summary: This study aimed to measure burnout, work exhaustion, professional fulfillment, and post-traumatic stress symptoms among clinicians and administrators practicing in pediatric solid organ transplant teams. Results showed that one-third of participants endorsed burnout, while 43% reported professional fulfillment. Female clinicians were more likely to experience work exhaustion and post-traumatic stress symptoms.
PEDIATRIC TRANSPLANTATION
(2021)
Article
Endocrinology & Metabolism
Jaclyn Lennon Papadakis, Jenna B. Shapiro, Meredyth Evans, Marissa A. Feldman, Lindsey E. G. Weil, Anthony T. Vesco, Laurie Gayes Thompson, Kimberly Garza, Jill Weissberg-Benchell
Summary: Research indicates that adolescents' perception of their diabetes management is a significant predictor of actual management. The Diabetes Skills Checklist Teen-Report (DSC-T) and DSC Parent of Teen-Report (DSC-PT) were found to have excellent psychometric properties, with positive correlations with diabetes strengths and negative correlations with HbA1c. The tools show potential for promoting successful transition of diabetes care from parent to adolescent during clinic visits.
PEDIATRIC DIABETES
(2021)
Article
Psychology, Developmental
Sharon L. Lo, Ashley N. Gearhardt, Emily M. Fredericks, Benjamin Katz, Julie Sturza, Niko Kaciroti, Richard Gonzalez, Christine M. Hunter, Kendrin Sonneville, Kiren Chaudhry, Julie C. Lumeng, Alison L. Miller
Summary: Self-regulation, specifically targeting executive functioning, emotion regulation, future-oriented thinking, and approach biases, were evaluated in a clinical trial with children from low-income backgrounds. Results showed that interventions had small to moderate effect sizes, with most not statistically significant. The intercorrelation analyses indicated different associations between measures within each self-regulation target.
JOURNAL OF EXPERIMENTAL CHILD PSYCHOLOGY
(2021)
Article
Gastroenterology & Hepatology
Daniel H. Leung, Lisa G. Sorensen, Wen Ye, Kieran Hawthorne, Vicky L. Ng, Kathleen M. Loomes, Emily M. Fredericks, Estella M. Alonso, James E. Heubi, Simon P. Horslen, Saul J. Karpen, Jean P. Molleston, Philip Rosenthal, Ronald J. Sokol, Robert H. Squires, Kasper S. Wang, Binita M. Kamath, John C. Magee
Summary: Neurodevelopmental status among children with inherited cholestatic liver diseases is affected, with ALGS patients at higher risk and A1AT and PFIC patients at lower risk. ALGS showed lower FSIQ than expected compared to normal distribution and scored lower in multiple domains. Total bilirubin, alkaline phosphatase, albumin, hemoglobin, and parental education were significantly associated with FSIQ.
JOURNAL OF PEDIATRIC GASTROENTEROLOGY AND NUTRITION
(2022)
Article
Psychology, Developmental
Alison L. Miller, Dana Albright, Katherine W. Bauer, Hurley O. Riley, Marisa E. Hilliard, Julie Sturza, Niko Kaciroti, Sharon L. Lo, Katy M. Clark, Joyce M. Lee, Emily M. Fredericks
Summary: This study aims to investigate the impact of the COVID-19 pandemic on families of youth with T1D. The study found that family pandemic-related stress was associated with decreased emotional functioning over time, while youth self-regulation predicted better emotional and T1D-related functioning.
JOURNAL OF PEDIATRIC PSYCHOLOGY
(2022)
Article
Endocrinology & Metabolism
Frida Sundberg, Carine DeBeaufort, Lars Krogvold, Susana Patton, Thereza Piloya, Carmel Smart, Michelle Van Name, Jill Weissberg-Benchell, Jose Silva, Linda A. DiMeglio
PEDIATRIC DIABETES
(2022)
Article
Endocrinology & Metabolism
Jill Weissberg-Benchell, Anthony T. Vesco, Jenna Shapiro, Peter Calhoun, Edward R. Damiano, Steven J. Russell, Zoey Li, Firas H. El-Khatib, Katrina J. Ruedy, Courtney A. Balliro, Roy W. Beck, Bionic Pancreas Res Grp
Summary: This study evaluated the psychosocial impact and user experience of the insulin-only configuration of iLet bionic pancreas in individuals with type 1 diabetes. The results showed that adults experienced a reduction in diabetes-specific emotional distress and fear of hypoglycemia, as well as improved perceived well-being. Children and teenagers also demonstrated high acceptability and reduced burden with the system, but the improvements in psychosocial outcomes were less clear.
DIABETES TECHNOLOGY & THERAPEUTICS
(2023)
Article
Psychology, Clinical
Jenna B. Shapiro, Fred B. Bryant, Grayson N. Holmbeck, Korey K. Hood, Jill Weissberg-Benchell
Summary: The study identified two subgroups of adolescents with Type I diabetes based on resilience processes, one with high resilience and one with low resilience, with the latter exhibiting more distress, higher HbA1c levels, less glucose monitoring, and fewer diabetes management behaviors at baseline. These differences persisted over a 3-year period. Subgroup membership did not moderate the efficacy of a resilience-promoting program compared to the control group.
Article
Endocrinology & Metabolism
Sarah S. Collard, Pramod R. Regmi, Korey K. Hood, Lori Laffel, Jill Weissberg-Benchell, Diana Naranjo, Katharine Barnard-Kelly
PRACTICAL DIABETES
(2020)