225 results on '"Kazak AE"'
Search Results
2. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study.
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Feudtner C, Carroll KW, Hexem KR, Silberman J, Kang TI, and Kazak AE
- Published
- 2010
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3. Single parents of children with chronic illness: an understudied phenomenon.
- Author
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Brown RT, Wiener L, Kupst MJ, Brennan T, Behrman R, Compas BE, David Elkin T, Fairclough DL, Friebert S, Katz E, Kazak AE, Madan-Swain A, Mansfield N, Mullins LL, Noll R, Patenaude AF, Phipps S, Sahler OJ, Sourkes B, and Zeltzer L
- Abstract
Objective: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness.Methods: We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning.Results: While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver.Conclusions: There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry. [ABSTRACT FROM AUTHOR]- Published
- 2008
4. Posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer.
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Rourke MT, Hobbie WL, Schwartz L, and Kazak AE
- Published
- 2007
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5. Classifying the intensity of pediatric cancer treatment protocols: the Intensity of Treatment Rating Scale 2.0 (ITR-2)
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Werba BE, Hobbie W, Kazak AE, Ittenbach RF, Reilly AF, and Meadows AT
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- 2007
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6. Pediatric medical traumatic stress in pediatric oncology: family systems interventions.
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Pai ALH and Kazak AE
- Published
- 2006
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7. Pediatric-specific parenting stress and family functioning in parents of children treated for cancer.
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Streisand R, Kazak AE, and Tercyak KP
- Abstract
The association between pediatric parenting stress (i.e., parenting stress related to caring for a child with a medical illness) and family functioning outcomes was evaluated in 116 parents of children treated for cancer. Results indicated that pediatric parenting stress, as measured by the Pediatric Inventory for Parents (PIP), was significantly correlated with family functioning, using the McMaster Family Assessment Device (FAD). After controlling for child treatment status (on vs. off treatment), several independent associations among PIP and FAD scores emerged, indicating that increased pediatric parenting stress is associated with poorer family functioning outcomes. Findings, within the limitations of the study, suggest that pediatric parenting stress and family functioning are important constructs to assess when working with children who are being treated for cancer, and family-based interventions targeting the needs of this population may be warranted. [ABSTRACT FROM AUTHOR]
- Published
- 2003
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8. Journal of pediatric psychology: A brief history (1969-1999)
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Kazak, AE
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- 2000
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9. Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood.
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Rourke MT, Stuber ML, Hobbie WL, and Kazak AE
- Abstract
Little research has been done to explore how the psychological symptoms of child and adolescent cancer survivors change in the decades following successful treatment. This article examines these changes with a focus on the utility of a posttraumatic stress framework for understanding the long-term coping issues that individuals face as they mature and make transitions to young adulthood. First, the literature supporting the use of a posttraumatic stress framework in child and adolescent survivors is reviewed. Developmental contributions to changes and increases in posttraumatic symptomatology during young adulthood are then discussed and posttraumatic symptoms most often seen in this group are presented. Preliminary research with young adult survivors is also reviewed and discussed as support for a posttraumatic stress framework with this population. Ongoing research efforts aimed at elaborating on this framework are described. Finally, clinical implications for health care providers are explored, and guidelines for assessing the impact of posttraumatic stress on young adults' use of health care resources are offered. Copyright (c) 1999 by Association of Pediatric Oncology Nurses [ABSTRACT FROM AUTHOR]
- Published
- 1999
10. Pharmacologic and psychologic interventions for procedural pain.
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Kazak AE, Penati B, Brophy P, and Himelstein B
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- 1998
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11. Commentary: life threat, risk, and resilience in pediatric medical traumatic stress.
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Werba BE and Kazak AE
- Published
- 2009
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12. Prescribing practices of selective serotonin reuptake inhibitors (SSRIs) among pediatric oncologists: a single institution experience.
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Kersun LS and Kazak AE
- Published
- 2006
13. Mental Health Diagnoses and Suicidality Among Transgender Youth in Hospital Settings.
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Nunes-Moreno M, Furniss A, Cortez S, Davis SM, Dowshen N, Kazak AE, Nahata L, Pyle L, Reirden DH, Schwartz B, Sequeira GM, and Nokoff NJ
- Abstract
Purpose: The purpose of this analysis is to: 1) describe the most common mental health diagnoses in the emergency department (ED) and inpatient hospital settings among transgender and gender diverse (TGD) youth vs. matched controls and 2) evaluate if a gender-affirming hormone therapy (GAHT) or gonadotropin-releasing hormone agonist (GnRHa) prescription decreased the risk of suicidality within these settings. Methods: Using the PEDSnet dataset (years 2009-2019), TGD youth aged 8-18 ( n = 3414, with a median age at last visit of 16.2 [14.4, 17.7] years, were propensity-score matched to controls ( n = 13,628, age 16.6 [14.2, 18.3] years). Relative risks of the most common mental health diagnoses within ED and inpatient settings were calculated for TGD youth compared with controls. Recurrent time-to-event analysis was used to examine whether GAHT or GnRHa attenuated the risk of suicidality among subsamples of TGD youth. Results: TGD youth had a higher relative risk (95% confidence interval [CI]) of mental health diagnoses and suicidality in the ED (5.46 [4.71-6.33]) and inpatient settings (6.61 [5.28-8.28]) than matched controls. TGD youth prescribed GAHT had a 43.6% lower risk of suicidality (hazard ratio [HR] = 0.564 [95% CI 0.36-0.89]) compared with those never prescribed GAHT during our study period or before GAHT initiation. TGD youth who were prescribed GnRHa therapy had a nonstatistically significant reduction in ED or inpatient suicidality diagnoses compared with those never prescribed GnRHa (HR = 0.79 [0.47-1.31]). Conclusion: Although risk of mental health diagnoses and suicidality in ED and inpatient settings was high among TGD youth, a GAHT prescription was associated with a significant reduction in suicidality risk.
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- 2024
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14. Estimating Transgender and Gender-Diverse Youth Populations in Health Systems and Survey Data.
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Kahn NF, Sequeira GM, Asante PG, Kidd KM, Coker TR, Christakis DA, Karrington B, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata L, Nokoff NJ, Voss RV, and Richardson LP
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- Humans, Adolescent, Male, Female, United States epidemiology, Gender Dysphoria epidemiology, Gender Dysphoria psychology, Surveys and Questionnaires, Transgender Persons statistics & numerical data
- Abstract
Objectives: To identify and examine demographic variation in estimates of gender-diverse youth (GDY) populations from the PEDSnet learning health system network and the Youth Risk Behavior Survey (YRBS)., Methods: The PEDSnet sample included 14- to 17-years-old patients who had ≥2 encounters at a member institution before March 2022, with at least 1 encounter in the previous 18 months. The YRBS sample included pooled data from 14- to 17-year-old in-school youth from the 2017, 2019, and 2021 survey years. Adjusted logistic regression models tested for associations between demographic characteristics and gender dysphoria (GD) diagnosis (PEDSnet) or self-reported transgender identity (YRBS)., Results: The PEDSnet sample included 392 348 patients and the YRBS sample included 270 177 youth. A total of 3453 (0.9%) patients in PEDSnet had a GD diagnosis and 5262 (1.9%) youth in YRBS self-identified as transgender. In PEDSnet, adjusted logistic regression indicated significantly lower likelihood of GD diagnosis among patients whose electronic medical record-reported sex was male and among patients who identified as Asian, Black/African American, and Hispanic/Latino/a/x/e. In contrast, in the YRBS sample, only youth whose sex was male had a lower likelihood of transgender identity., Conclusions: GDY are underrepresented in health system data, particularly those whose electronic medical record-reported sex is male, and Asian, Black/African American, and Hispanic/Latino/a/x/e youth. Collecting more accurate gender identity information in health systems and surveys may help better understand the health-related needs and experiences of GDY and support the development of targeted interventions to promote more equitable care provision., (Copyright © 2024 by the American Academy of Pediatrics.)
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- 2024
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15. Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study.
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Gramszlo C, Karpyn A, Christofferson J, McWhorter LG, Demianczyk AC, Neely T, Zyblewski S, Shillingford A, Kazak AE, and Sood E
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- Humans, Female, Male, Adult, Infant, Newborn, Counseling, Needs Assessment, Qualitative Research, Social Support, Adaptation, Psychological, Young Adult, Decision Making, Heart Defects, Congenital diagnosis, Parents education, Crowdsourcing
- Abstract
Objective: This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs., Study Design: Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs., Results: Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs., Conclusion: Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making., Key Points: · CHD counseling after diagnosis may provide opportunities to promote parents' mental health.. · Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.. · This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive.., Competing Interests: None declared., (Thieme. All rights reserved.)
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- 2024
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16. Community Partnership to Co-Develop an Intervention to Promote Equitable Uptake of the COVID-19 Vaccine Among Pediatric Populations.
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Enlow PT, Thomas C, Osorio AM, Lee M, Miller JM, Pelaez L, Kazak AE, and Phan TT
- Abstract
Objective: To describe the process of engaging community, caregiver, and youth partners in codeveloping an intervention to promote equitable uptake of the COVID-19 vaccine in non-Hispanic Black (Black) and Hispanic youth who experience higher rates of COVID-19 transmission, morbidity, and mortality but were less likely to receive the COVID-19 vaccine., Methods: A team of 11 Black and Hispanic community partners was assembled to codevelop intervention strategies with our interdisciplinary research team. We used a mixed-methods crowdsourcing approach with Black and Hispanic youth (n=15) and caregivers of Black and Hispanic youth (n=20) who had not yet been vaccinated against COVID-19, recruited from primary care clinics, to elicit perspectives on the acceptability of these intervention strategies., Results: We codeveloped five strategies: (1) community-tailored handouts and posters, (2) videos featuring local youth, (3) family-centered language to offer vaccines in the primary care clinic, (4) communication-skills training for primary care providers, and (5) use of community health workers to counsel families about the vaccine. The majority (56-96.9%) of youth and caregivers rated each of these strategies as acceptable, especially because they addressed common concerns and facilitated shared decision-making., Conclusions: Engaging community and family partners led to the co-development of culturally- and locally-tailored strategies to promote dialogue and shared decision-making about the COVID-19 vaccine. This process can be used to codevelop interventions to address other forms of public health disparities., Policy Implications: Intervention strategies that promote dialogues with trusted healthcare providers and support shared decision-making are acceptable strategies to promote COVID-19 vaccine uptake among youth from historically underserved communities. Stakeholder-engaged methods may also help in the development of interventions to address other forms of health disparities., (2024 The journal and its content is copyrighted by the Delaware Academy of Medicine / Delaware Public Health Association (Academy/DPHA).)
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- 2024
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17. Pediatric psychosocial preventative health model: Achieving equitable psychosocial care for children and families.
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Kazak AE, Scialla M, Deatrick JA, and Barakat LP
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- Child, Humans, Pediatrics methods, Pediatrics standards, Preventive Medicine, Mental Health Services
- Abstract
Objective: The Pediatric Psychosocial Preventative Health Model (PPPHM) is a three-tier model of family psychosocial risk used to guide intervention approaches in pediatric healthcare settings. Screening all families to determine levels of risk supports equitable care. We review evidence from papers using the Psychosocial Assessment Tool (PAT), a brief caregiver-report measure of family psychosocial risk with scores that map to the PPPHM, to characterize the distribution of risk. We predict that across study samples the distribution of risk on the PPPHM will be approximately 60% universal (low), 30% targeted (moderate), and 10% clinical (high)., Method: We conducted a scoping review searching PubMed, MEDLINE, Emcare, and PsycInfo for articles that reported PPPHM data using the PAT., Results: Forty-seven samples from 43 papers were included, reporting on patients with 17 conditions. PPPHM scores were highly consistent with median percentages of 55% universal, 34% targeted, and 11% clinical. There is evidence of higher levels of risk for samples using the Spanish version of the PAT, from weight management programs and with families who have children with autism spectrum disorder., Conclusions: The data demonstrate consistent patterns of psychosocial risk distributions on the PPPHM and support implementation of universal family psychosocial risk screening, followed by delivery of personalized care based on level of risk. Screening all families promotes health equity in pediatric health care settings by normalizing the importance of understanding psychosocial risk and resiliencies and assuring family input in the delivery of integrated psychosocial care. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
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- 2024
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18. User-Centered Development of HEARTPrep, a Digital Health Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.
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Sood E, Canter KS, Battisti S, Nees SN, Srivastava S, Munoz Osorio A, Feinson J, Gallo A, Jung S, Riegel E, Ng S, and Kazak AE
- Abstract
User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep
© , a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) developing prototype and testable intervention; (IV) conducting think-aloud testing; and (V) completing beta testing. Partnerships with parents, clinicians, and design/technology experts were integral throughout the development of HEARTPrep© . Parents of children with CHD also served as participants in Phases II-V, contributing to the creation of content and providing feedback to inform the iterative refinement of HEARTPrep© . These five phases produced a refined digital health intervention with promising feasibility, usability, and acceptability results. This user-centered approach can be used to develop digital health interventions targeting various health outcomes., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)- Published
- 2024
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19. The Psychosocial Impact of the COVID-19 Pandemic on Families of Youth of Color: A Prospective Cohort Study.
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Romagnoli BR, Phan TT, Lewis AM, Alderfer MA, Kazak AE, Arasteh K, and Enlow PT
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- Adolescent, Child, Humans, Ethnicity psychology, Hispanic or Latino psychology, Pandemics, Prospective Studies, Black or African American, Racial Groups, Caregivers psychology, White, COVID-19 epidemiology, COVID-19 psychology, Family psychology
- Abstract
Objective: Prospectively examine racial and ethnic disparities in exposure to COVID-19-related stressors and their impact on families., Methods: A racially, ethnically, and socioeconomically diverse cohort of caregivers of youth (n = 1,581) representative of the population served by a pediatric healthcare system completed the COVID-19 Exposure and Family Impact Scales in Oct/Nov 2020 and March/April 2021. Linear mixed-effects models were used to examine exposure to COVID-19-related events (Exposure), impact of the pandemic on family functioning and well-being (Impact), and child and parent distress (Distress) across time and as a function of race and ethnicity, adjusting for other sociodemographic variables., Results: Exposure and Distress increased over time for all participants. After adjusting for sociodemographic factors, caregivers of Black and Hispanic youth reported greater Exposure than caregivers of White youth and caregivers of Black youth had a greater increase in Exposure over time than caregivers of White youth. Caregivers of White youth reported greater Impact than caregivers of Black and Other race youth., Conclusions: Exposure to and impact of the COVID-19 pandemic on family psychosocial functioning varied by race and ethnicity. Although exposure to COVID-19-related events was greater among Hispanic and non-Hispanic Black families, those of marginalized races reported less family impact than non-Hispanic White families, suggesting resiliency to the pandemic. Research should examine such responses to public health crises in communities of color, with a focus on understanding protective factors. These findings suggest the importance of culturally tailored interventions and policies that support universal psychosocial screenings during times of public health crises., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2024
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20. Psychological Symptoms and Service Utilization in Prepubertal and Pubertal Transgender and Gender-Diverse Patients.
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Eisenberg J, Felleman S, Bear B, Mercier R, Kazak AE, and Schwartz BI
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- Adolescent, Humans, Male, Child, Retrospective Studies, Gender Identity, Anxiety epidemiology, Transgender Persons psychology, Feeding and Eating Disorders
- Abstract
Study Objective: To describe the demographic characteristics and psychological symptoms of gender-diverse patients and to compare symptoms between prepubertal and pubertal subgroups METHODS: This was a retrospective chart review of all gender-diverse patients seen by at least 1 provider at the Nemours Gender Wellness Program from March 2015 to December 2020. The extracted data included demographic and psychosocial characteristics at baseline and 1-year follow-up visits. Pubertal status was determined by Tanner staging by a pediatric endocrinologist or gynecologist. Descriptive statistics were used to compare these variables between prepubertal and pubertal subgroups., Results: Our sample included 177 individuals at baseline and 96 subjects at the 1-year follow-up visit. Most patients were White (83.0%), non-Hispanic (92.0%), transgender male (72.9%), and pubertal (90.4%). Compared with prepubertal patients, at the baseline visit, pubertal patients had significantly higher rates of current (68.1% vs 17.6%, P < .001) and lifetime (80.0% vs 23.5%, P < .001) depressive symptoms, current anxiety symptoms (70.0% vs 41.2%, P = .01), lifetime suicide attempts (12.5% vs 0%, P < .001), and a formal diagnosis of an eating disorder (5.0% vs 0%, P < .001). Symptoms did not change significantly over time from baseline to the 1-year follow-up visit., Conclusion: We found elevated rates of psychological symptoms and diagnoses in gender-diverse youth, with higher rates in pubertal compared with prepubertal patients. By elucidating how the psychosocial characteristics of gender-diverse children and adolescents differ based on pubertal status, these data can be used to improve current outreach and treatment strategies for transgender pediatric patients., Competing Interests: Conflicts of Interest The authors report no proprietary or commercial interest in any product mentioned or concept discussed in this article., (Copyright © 2023. Published by Elsevier Inc.)
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- 2024
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21. Mental Health of Youth With Autism Spectrum Disorder and Gender Dysphoria.
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Kahn NF, Sequeira GM, Reyes V, Garrison MM, Orlich F, Christakis DA, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata L, Nokoff NJ, Voss RV, and Richardson LP
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- Humans, Child, Adolescent, Mental Health, Anxiety Disorders complications, Anxiety, Autism Spectrum Disorder complications, Autism Spectrum Disorder diagnosis, Autism Spectrum Disorder epidemiology, Gender Dysphoria complications, Gender Dysphoria epidemiology, Gender Dysphoria psychology
- Abstract
Background and Objectives: Youth with either autism spectrum disorder (ASD) or gender dysphoria (GD) alone have also been shown to be at greater risk for mental health (MH) concerns; however, very little research has considered how cooccurring ASD and GD may exacerbate MH concerns. The purpose of this study was to examine associations between ASD, GD, and MH diagnoses (anxiety, depression, eating disorder, suicidality, and self-harm) among US adolescent populations., Methods: This is a secondary analysis of a large administrative dataset formed by 8 pediatric health system members of the PEDSnet learning health system network. Analyses included descriptive statistics and adjusted mixed logistic regression models testing for associations between combinations of ASD and GD diagnoses and MH diagnoses as recorded in the patient's electronic medical record., Results: Based on data from 919 898 patients aged 9 to 18 years, adjusted mixed logistic regression indicated significantly greater odds of each MH diagnosis among those with ASD alone, GD alone, and cooccurring ASD/GD diagnoses compared with those with neither diagnosis. Youth with cooccurring ASD/GD were at significantly greater risk of also having anxiety (average predicted probability, 0.75; 95% confidence interval, 0.68-0.81) or depression diagnoses (average predicted probability, 0.33; 95% confidence interval, 0.24-0.43) compared with youth with ASD alone, GD alone, or neither diagnosis., Conclusions: Youth with cooccurring ASD/GD are more likely to also be diagnosed with MH concerns, particularly anxiety and depression. This study highlights the need to implement developmentally appropriate, gender-affirming MH services and interventions for youth with cooccurring ASD/GD., (Copyright © 2023 by the American Academy of Pediatrics.)
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- 2023
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22. AYA-UNITE: Lessons Learned on Intervention Development Promoting Social and Physical Health of Adolescent/Young Adult Cancer Survivors.
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Rao P, Kazak AE, Doerksen SE, Koehly LM, Verdery AM, Heitzenrater J, Harding BA, Byrnes CL, Costigan HJ, Rovniak LS, Sciamanna CN, Van Scoy LJ, and Schmitz KH
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- Humans, Adolescent, Young Adult, Exercise, Cancer Survivors psychology, Neoplasms therapy, Neoplasms psychology
- Abstract
Adolescent/young adult cancer survivors (AYACS) struggle with poor psychosocial health related to social disruptions due to cancer diagnosis, impacting long-term goal achievement and overall health. In particular, social health promotion is overlooked in AYACS' care. AYA-UNITE, a sociobehavioral exercise intervention pilot for AYACS 15-21 years of age at cancer diagnosis, was designed to foster AYACS' social and physical health. AYA-UNITE was a 12-week group-based virtual exercise program incorporating strength training and aerobic activity. In this brief report, we account AYA-UNITE's conceptual design, lessons learned through AYA-UNITE intervention development, and opportunities for improvement in implementing effective AYACS psychosocial interventions (NCT03778658).
- Published
- 2023
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23. A Psychosocial Care Model for Families Affected by Congenital Heart Disease.
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Driscoll CFB, Christofferson J, McWhorter LG, Demianczyk AC, Brosig CL, Jackson EA, Gramszlo C, Zyblewski SC, Kazak AE, and Sood E
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- Child, Female, Humans, Child, Preschool, Parents psychology, Mothers, Psychosocial Support Systems, Psychiatric Rehabilitation, Heart Defects, Congenital therapy, Heart Defects, Congenital psychology
- Abstract
Objectives: To develop a model of family-based psychosocial care for congenital heart disease (CHD)., Design: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals., Setting: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection., Subjects: Geographically diverse sample of 100 parents (72 mothers and 28 fathers) of young children with CHD., Interventions: None., Measurements and Main Results: Parents joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process. Three broad themes corresponding to pillars of family-based psychosocial care were identified: pillar 1) parent partnership in family-integrated medical care, pillar 2) supportive interactions focused on parent and family wellbeing, and pillar 3) integrated psychosocial care and peer support for parents and families. Each pillar was supported by subthemes corresponding to specific intervention strategies. Most parents described the need for intervention strategies across multiple pillars, with almost half reporting needs across all three pillars of psychosocial care. Parents' preferences for psychosocial support changed over time with changes to their child's medical status and across care settings (e.g., hospital, outpatient clinic)., Conclusions: Results support a model of family-based psychosocial care that is multidimensional and flexible to meet the needs of families affected by CHD. All members of the healthcare team play an important role in providing psychosocial support. Future research incorporating components of implementation science is needed to promote uptake of these findings, with the goal of optimizing family-based psychosocial support in the hospital setting and beyond., Competing Interests: Drs Sood and Kazak received funding from the National Institute of General Medical Sciences of the National Institutes of Health (grant numbers U54-GM104941 and 1P20GM144270-01). Drs. McWhorter and Sood’s institutions received funding from the National Institute of General Medical Sciences; they received support for article research from the National Institutes of Health. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)
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- 2023
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24. Virtually Delivered Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease: Feasibility and Acceptability of HEARTPrep.
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Sood E, Nees SN, Srivastava S, Ng S, Torres C, Munoz Osorio A, Canter KS, Braley KT, Spradley L, Stein J, Riegel E, and Kazak AE
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- Female, Infant, Child, Pregnancy, Humans, Feasibility Studies, Mothers, Anxiety, Psychosocial Intervention, Heart Defects, Congenital diagnosis, Heart Defects, Congenital therapy
- Abstract
Prenatal diagnosis of congenital heart disease (CHD) often leads to anxiety, depression, and traumatic stress in expectant mothers, with long-term implications for the child and family. However, psychosocial intervention is rarely incorporated into prenatal care. HEARTPrep is a virtually delivered psychosocial intervention aimed at reducing distress and social isolation and increasing parenting self-efficacy and hope for mothers expecting a baby with CHD to promote long-term child/family well-being. This study evaluated the feasibility and acceptability of HEARTPrep. Participants were mothers receiving cardiology care for a fetal CHD diagnosis. Partners could participate with the mother. HEARTPrep was delivered through a mobile app and telehealth. Feasibility was assessed through enrollment/retention rates. Acceptability was assessed through 20 Likert-scale and five open-ended questions. Of 39 recruited mothers, 35 (90%) enrolled. Half of partners (48%) also participated. Twenty-seven of 35 enrolled mothers (77%) completed HEARTPrep. On a scale from 0 (Not at All) to 4 (Very), mean item acceptability scores ranged from 3.5 to 3.9. Mothers reported HEARTPrep helped them feel less distressed (mean: 3.74), less alone (3.84), more prepared (3.89), and more hopeful (3.84). Opportunities to process emotions, develop coping skills, learn with their partner, navigate relationships, understand they are not alone, connect with peer support, access resources, and prepare for stressors were described as helpful. HEARTPrep is feasible and acceptable for mothers expecting a baby with CHD. Future research will evaluate its efficacy in preventing/reducing maternal mental health problems and improving postnatal clinical outcomes., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2023
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25. Co-occurring Autism Spectrum Disorder and Gender Dysphoria in Adolescents.
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Kahn NF, Sequeira GM, Garrison MM, Orlich F, Christakis DA, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata L, Nokoff NJ, Voss RV, and Richardson LP
- Subjects
- Adolescent, Child, Female, Humans, Asian, Electronic Health Records, Prevalence, Black or African American, Autism Spectrum Disorder diagnosis, Autism Spectrum Disorder epidemiology, Autism Spectrum Disorder complications, Gender Dysphoria diagnosis, Gender Dysphoria epidemiology, Gender Dysphoria complications
- Abstract
Background and Objectives: Autism spectrum disorder (ASD) and gender dysphoria (GD) frequently cooccur. However, existing research has primarily used smaller samples, limiting generalizability and the ability to assess further demographic variation. The purpose of this study was to (1) examine the prevalence of cooccurring ASD and GD diagnoses among US adolescents aged 9 to 18 and (2) identify demographic differences in the prevalence of cooccurring ASD and GD diagnoses., Methods: This secondary analysis used data from the PEDSnet learning health system network of 8 pediatric hospital institutions. Analyses included descriptive statistics and adjusted mixed logistic regression testing for associations between ASD and GD diagnoses and interactions between ASD diagnosis and demographic characteristics in the association with GD diagnosis., Results: Among 919 898 patients, GD diagnosis was more prevalent among youth with an ASD diagnosis compared with youth without an ASD diagnosis (1.1% vs 0.6%), and adjusted regression revealed significantly greater odds of GD diagnosis among youth with an ASD diagnosis (adjusted odds ratio = 3.00, 95% confidence interval: 2.72-3.31). Cooccurring ASD/GD diagnoses were more prevalent among youth whose electronic medical record-reported sex was female and those using private insurance, and less prevalent among youth of color, particularly Black and Asian youth., Conclusions: Results indicate that youth whose electronic medical record-reported sex was female and those using private insurance are more likely, and youth of color are less likely, to have cooccurring ASD/GD diagnoses. This represents an important step toward building services and supports that reduce disparities in access to care and improve outcomes for youth with cooccurring ASD/GD and their families., (Copyright © 2023 by the American Academy of Pediatrics.)
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- 2023
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26. Validation of the Psychosocial Assessment Tool Sibling Module Follow-Up Version.
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Davis KA, Alderfer MA, Pariseau E, Lewis AM, Kazak AE, Muriel AC, and Long KA
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- Child, Adolescent, Humans, Psychometrics, Follow-Up Studies, Cross-Sectional Studies, Surveys and Questionnaires, Parents psychology, Siblings psychology, Neoplasms diagnosis, Neoplasms psychology
- Abstract
Objective: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier., Methods: Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0-17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8-17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff., Results: Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0-2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00)., Conclusions: The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings' unmet psychosocial needs and improving trajectories of sibling functioning., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2023
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27. Persistent Disparities in Pediatric Health Care Engagement During the COVID-19 Pandemic.
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Phan TT, Enlow PT, Lewis AM, Arasteh K, Hildenbrand AK, Price J, Schultz CL, Reynolds V, Kazak AE, and Alderfer MA
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- Child, Humans, Ambulatory Care, Black People, Cross-Sectional Studies, Pandemics, White, Infant, Newborn, Infant, Child, Preschool, Adolescent, Young Adult, Mid-Atlantic Region, Black or African American, COVID-19 epidemiology, Healthcare Disparities
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Objective: The COVID-19 pandemic has disrupted traditional health care, including pediatric health care. We described the impact of the pandemic on disparities in pediatric health care engagement., Methods: Using a population-based cross-sectional time-series design, we compared monthly ambulatory care visit volume and completion rates (completed vs no-show and cancelled visits) among pediatric patients aged 0-21 years in 4 states in the mid-Atlantic United States during the first year of the COVID-19 pandemic (March 2020-February 2021) with the same period before the pandemic (March 2019-February 2020). We used unadjusted odds ratios, stratified by visit type (telehealth or in-person) and sociodemographic characteristics (child race and ethnicity, caregiver primary language, geocoded Child Opportunity Index, and rurality)., Results: We examined 1 556 548 scheduled ambulatory care visits for a diverse pediatric patient population. Visit volume and completion rates (mean, 70.1%) decreased during the first months of the pandemic but returned to prepandemic levels by June 2020. Disparities in in-person visit completion rates among non-Hispanic Black versus non-Hispanic White patients (64.9% vs 74.3%), patients from socioeconomically disadvantaged versus advantaged communities as measured by Child Opportunity Index (65.8% vs 76.4%), and patients in rural versus urban neighborhoods (66.0% vs 70.8%) were the same during the remainder of the first year of the pandemic as compared with the previous year. Concurrent with large increases in telehealth (0.5% prepandemic, 19.0% during the pandemic), telehealth completion rates increased., Conclusions: Disparities in pediatric visit completion rates that existed before the pandemic persisted during the pandemic. These findings underscore the need for culturally tailored practices to reduce disparities in pediatric health care engagement.
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- 2023
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28. The Electronic Surviving Cancer Competently Intervention Program-a Psychosocial Digital Health Intervention for English- and Spanish-Speaking Parents of Children With Cancer: Protocol for Randomized Controlled Trial.
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Canter KS, Ritterband L, Freyer DR, Askins MA, Bava L, Loucas C, Arasteh K, You W, and Kazak AE
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Background: The psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities., Objective: The objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer., Methods: Using a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference., Results: The primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement., Conclusions: This trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer., Trial Registration: ClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302., International Registered Report Identifier (irrid): PRR1-10.2196/46339., (©Kimberly S Canter, Lee Ritterband, David R Freyer, Martha A Askins, Laura Bava, Caitlyn Loucas, Kamyar Arasteh, Wen You, Anne E Kazak. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 02.06.2023.)
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- 2023
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29. Psychosocial Staffing and Implementation of the International Society for Pediatric and Adolescent Diabetes Psychological Care Guidelines in U.S. Pediatric Diabetes Clinics.
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Price J, Lewis AM, Pierce JS, Enlow PT, Okonak K, and Kazak AE
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Background: Few studies have examined the implementation of the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines for the Psychological Care of Children and Adolescents with Type 1 Diabetes., Objective: To collect benchmark data on psychosocial staffing and implementation of the ISPAD guidelines across U.S. pediatric diabetes clinics., Methods: Medical ( n = 95; 77 endocrinologists and 18 advance practice providers) and psychosocial ( n = 86; 43 social workers and 43 psychologists) providers from 98 of 115 contacted clinics completed an online survey (85% response rate). Providers reported the number of psychosocial staff and rated the adequacy of psychosocial staffing, quality of psychosocial care, and adherence to the ISPAD guidelines in their clinics. χ
2 Tests and ANOVA were used to examine differences across clinic size and across medical and psychosocial providers., Results: Clinics averaged a total of ∼4 hours per week of psychosocial provider time per 100 patients with type 1 diabetes. Only 27% of providers agreed that psychosocial staffing was adequate, and 35% described their psychosocial care as comprehensive. Implementation of the ISPAD guidelines varied across clinics, with minimal differences across clinic size. Medical providers reported that evidence-based psychological assessment and interventions were delivered consistently by <55% of clinics. Psychosocial, compared with medical, providers were more likely to report frequent implementation of psychosocial assessment and intervention guidelines., Conclusion: Psychological care in U.S. pediatric type 1 diabetes clinics does not consistently meet the ISPAD guidelines, and many clinics lack adequate psychosocial staff. These benchmark data are a foundational step to improve psychosocial care for pediatric patients with type 1 diabetes., Competing Interests: No potential conflicts of interest relevant to this article were reported., (© 2023 by the American Diabetes Association.)- Published
- 2023
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30. Outcomes of Menstrual Management Use in Transgender and Gender-Diverse Adolescents.
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Schwartz BI, Bear B, Short VL, and Kazak AE
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- Infant, Newborn, Humans, Female, Adolescent, Child, Amenorrhea chemically induced, Amenorrhea drug therapy, Retrospective Studies, Norethindrone Acetate, Levonorgestrel adverse effects, Hemorrhage etiology, Pain etiology, Transgender Persons, Intrauterine Devices, Medicated adverse effects, Contraceptive Agents, Female adverse effects
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Objective: To describe and compare the outcomes of various menstrual-management methods, including method choice, continuation, bleeding patterns, amenorrhea rates, effect on moods and dysphoria, and side effects, in transgender and gender-diverse adolescents., Methods: This was a retrospective chart review of all patients seen in a multidisciplinary pediatric gender program from March 2015 to December 2020 who were assigned female at birth, had achieved menarche, and used a menstrual-management method during the study period. Data were abstracted on patient demographics and menstrual-management method continuation, bleeding patterns, side effects, and satisfaction at 3 months (T1) and 1 year (T2). Outcomes were compared between method subgroups., Results: Among the 101 included patients, 90% chose either oral norethindrone acetate or a 52-mg levonorgestrel (LNG) intrauterine device (IUD). There were no differences in continuation rates for these methods at either follow-up time. Almost all patients had improved bleeding at T2 (96% for norethindrone acetate and 100% for IUD users), with no difference between subgroups. Amenorrhea rates were 84% for norethindrone acetate and 67% for IUD at T1 and 97% and 89%, respectively, at T2, with no differences at either point. The majority of patients had improved pain, menstrually related moods, and menstrually related dysphoria at both follow-up points. There were no differences in side effects between subgroups. There were no differences in method satisfaction between the groups at T2., Conclusion: Most patients chose norethindrone acetate or an LNG IUD for menstrual management. Continuation, amenorrhea, and improved bleeding, pain, and menstrually related moods and dysphoria were high for all patients, indicating that menstrual management is a viable intervention for gender-diverse patients who experience increased dysphoria related to menses., Competing Interests: Financial Disclosure Beth I. Schwartz disclosed that this article discusses off-label use of norethindrone acetate for menstrual suppression. The authors did not report any potential conflicts of interest., (Copyright © 2023 by the American College of Obstetricians and Gynecologists. Published by Wolters Kluwer Health, Inc. All rights reserved.)
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- 2023
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31. Menstrual Management Choices in Transgender and Gender Diverse Adolescents.
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Schwartz BI, Bear B, and Kazak AE
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- Infant, Newborn, Humans, Female, Male, Adolescent, Child, Gender Identity, Retrospective Studies, Menstruation, Levonorgestrel, Transgender Persons
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Purpose: Transgender and gender diverse patients who are assigned female at birth may request menstrual management to alleviate an increased dysphoria due to menses. The objective of this study is to describe the initiation and use over time of menstrual management methods (MMMs) in transgender and gender diverse adolescents., Methods: A retrospective chart review was conducted of patients in a multidisciplinary pediatric gender program from March 2015 to December 2020 who were assigned female at birth, identified as transgender or gender diverse, and had achieved menarche. A descriptive statistical analysis was performed., Results: Of 133 patients, 119 (90%) identified as transgender male, 11 (8%) as gender nonbinary, and 3 (2%) as another gender identity. Mean age was 15 (standard deviation 1.6) years. Only 12 (9%) patients had ever been sexually active. During the study period, 48 (36%) used gender-affirming testosterone. At the initial visit, 114 (86%) patients were not using an MMM. Of 80 patients who initiated a new MMM, 3 (4%) chose continuous oral contraceptive pills, 65 (83%) used norethindrone acetate (NETA), and 9 (11%) planned levonorgestrel intrauterine device (IUD) insertion. At 1 year, 56 patients were using NETA and 20 had an IUD in place., Discussion: This study provides data on MMM choice in transgender and gender diverse adolescents using these methods almost exclusively for menstrual management and not contraception. Although few patients were using an MMM at baseline, most opted to start a method when given the opportunity. The most common methods were NETA or an levonorgestrel IUD., (Copyright © 2022 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)
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- 2023
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32. Effects on Pediatric Cancer Survivors: The FAMily-Oriented Support (FAMOS) Randomized Controlled Trial.
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Bidstrup PE, Salem H, Andersen EW, Schmiegelow K, Rosthøj S, Wehner PS, Hasle H, Dalton SO, Johansen C, and Kazak AE
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- Female, Child, Humans, Child, Preschool, Parents psychology, Mothers, Survivors psychology, Cancer Survivors, Neoplasms therapy, Neoplasms psychology
- Abstract
Objective: To examine as secondary analyses the effect the FAMily-Oriented Support (FAMOS) family therapy program on reducing parent-reported medical traumatic stress in the sub-sample of pediatric cancer survivors, age 2-5 years., Methods: The FAMOS study was a national multicenter randomized controlled trial with all four pediatric oncology departments in Denmark (Clinicaltrials.gov [NCT02200731]). Families were randomized in parallel design (1:1) to intervention or usual care. The FAMOS program includes seven home-based psychotherapeutic sessions and is based on family systems therapy to address the individuals in the family system using cognitive behavioral, problem-solving and goal-setting techniques. Questionnaires were completed by parents at baseline, 6, and 12 months. In linear mixed-effects models, the effect of FAMOS on reducing children's trauma-related behavior after 6 and 12 months was examined in 62 children (31 in the intervention and 29 in the control group, respectively). It was also examined if a trauma-related behavior effect was mediated through reduced symptoms of depression in mothers and fathers, respectively., Results: On average, children in the intervention group experienced significantly larger decreases in trauma-related behaviors at 6 and 12 months than the control group (predicted mean difference -3.89, p = .02 and -6.24, p = .003, respectively). The effect on trauma-related behavior was partly mediated through reduced symptoms of depression in mothers, but not fathers., Conclusions: Adding to previously reported positive effects of the FAMOS intervention on parents' symptoms of post-traumatic stress and depression, significant improvements were found in young children's trauma related-behavior. Further research is needed to develop therapy for children with cancer., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2023
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33. Initial validation of a new psychosocial screener for siblings of youth with cancer: The Psychosocial Assessment Tool Sibling Modules.
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Long KA, Davis KA, Pariseau E, Muriel AC, Kazak AE, and Alderfer MA
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- Adolescent, Child, Cross-Sectional Studies, Humans, Infant, Infant, Newborn, Mass Screening, Psychometrics, Neoplasms diagnosis, Neoplasms psychology, Siblings psychology
- Abstract
Objective: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+., Methods: Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules., Results: Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001)., Conclusions: Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs., (© 2022 John Wiley & Sons Ltd.)
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- 2022
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34. Multicenter Analysis of Cardiometabolic-related Diagnoses in Transgender and Gender-Diverse Youth: A PEDSnet Study.
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Valentine A, Davis S, Furniss A, Dowshen N, Kazak AE, Lewis C, Loeb DF, Nahata L, Pyle L, Schilling LM, Sequeira GM, and Nokoff N
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- Adolescent, Cross-Sectional Studies, Estradiol, Gonadotropin-Releasing Hormone, Humans, Obesity, Overweight, Testosterone therapeutic use, Testosterone Congeners, Hypertension, Transgender Persons
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Context: Studies on cardiometabolic health in transgender and gender-diverse youth (TGDY) are limited to small cohorts., Objective: This work aimed to determine the odds of cardiometabolic-related diagnoses in TGDY compared to matched controls in a cross-sectional analysis, using a large, multisite database (PEDSnet)., Methods: Electronic health record data (2009-2019) were used to determine odds of cardiometabolic-related outcomes based on diagnosis, anthropometric, and laboratory data using logistic regression among TGDY youth vs controls. The association of gender-affirming hormone therapy (GAHT) with these outcomes was examined separately among TGDY. TGDY (n = 4172) were extracted from 6 PEDSnet sites and propensity-score matched on 8 variables to controls (n = 16 648). Main outcomes measures included odds of having cardiometabolic-related diagnoses among TGDY compared to matched controls, and among TGDY prescribed GAHT compared to those not prescribed GAHT., Results: In adjusted analyses, TGDY had higher odds of overweight/obesity (1.2; 95% CI, 1.1-1.3) than controls. TGDY with a testosterone prescription alone or in combination with a gonadotropin-releasing hormone agonist (GnRHa) had higher odds of dyslipidemia (1.7; 95% CI, 1.3-2.3 and 3.7; 95% CI, 2.1-6.7, respectively) and liver dysfunction (1.5; 95% CI, 1.1-1.9 and 2.5; 95% CI, 1.4-4.3) than TGDY not prescribed GAHT. TGDY with a testosterone prescription alone had higher odds of overweight/obesity (1.8; 95% CI, 1.5-2.1) and hypertension (1.6 95% CI, 1.2-2.2) than those not prescribed testosterone. Estradiol and GnRHa alone were not associated with greater odds of cardiometabolic-related diagnoses., Conclusion: TGDY have increased odds of overweight/obesity compared to matched controls. Screening and tailored weight management, sensitive to the needs of TGDY, are needed., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Endocrine Society. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2022
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35. Advancing health equity in pediatric cancer through implementation of universal family psychosocial risk screening.
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Deatrick JA, Kazak AE, Scialla MA, Madden RE, McDonnell GA, Okonak K, and Barakat LP
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- Child, Early Detection of Cancer, Family, Humans, Medical Oncology, United States, Health Equity, Neoplasms diagnosis, Neoplasms psychology
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Background: Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity., Purposes: The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening., Methods: Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions., Results: Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs., Conclusions: Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care., Trial Registration: NCT04446728 23 June 2020., (© 2022 John Wiley & Sons Ltd.)
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- 2022
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36. Access to urologists for participation in research: An analysis of NCI's Community Oncology Research Program landscape survey.
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Ellis SD, Vaidya R, Unger JM, Stratton K, Gills J, Van Veldhuizen P, Mederos E, Dressler EV, Hudson MF, Kamen C, Neuman HB, Kazak AE, Carlos RC, and Weaver KE
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Purpose: Urological cancer clinical trials face accrual challenges, which may stem from structural barriers within cancer programs. We sought to describe the extent to which urology cancer care providers are available within community cancer research programs and explore the role of oncology practice group ownership in their access to urology practices to participate in research., Materials and Methods: We conducted secondary analysis of organizational survey data collected in 2017 among National Cancer Institute Community Oncology Research Program practice groups. We used logistic regression to assess the association of self-reported access to urologists to participate in research and oncology practice group ownership type: independent, payor-provider, health-system, or public ownership., Results: Of the 209 community oncology practice groups in the analysis sample, 133 (63.6%) had access to urologists for research participation. Ownership was not statistically significantly associated with access to urology practices after controlling for other covariates (p = 0.4). Instead, having a hospital outpatient clinic (p = 0.008) and identifying as a safety-net hospital (p = 0.035) were both positively significantly associated with access to urologists to participate in research., Conclusions: Two-thirds of community cancer research groups have access to urology. Oncology ownership status was not associated with access to urologists for research. Research groups may need support to increase their capacity to engage non-oncology cancer care providers in research., (© 2022 Published by Elsevier Inc.)
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- 2022
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37. Experiences with Menses in Transgender and Gender Nonbinary Adolescents.
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Schwartz BI, Effron A, Bear B, Short VL, Eisenberg J, Felleman S, and Kazak AE
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- Adolescent, Amenorrhea, Child, Female, Gender Identity, Humans, Infant, Newborn, Male, Menstruation, Retrospective Studies, Transgender Persons
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Study Objective: To describe menstrual history, associated dysphoria, and desire for menstrual management in transgender male and gender diverse adolescents who were assigned female at birth DESIGN: Retrospective chart review SETTING: Tertiary care children's hospital PARTICIPANTS: All patients seen in a multidisciplinary pediatric gender program from March 2015 through December 2020 who were assigned female at birth, identified as transgender male or gender nonbinary, and had achieved menarche INTERVENTION: None MAIN OUTCOME MEASURES: Patient demographics, menstrual history, interest in and prior experiences with menstrual management, parental support, and concerns about menstrual management RESULTS: Of the 129 included patients, 116 (90%) identified as transgender male and 13 (10%) as gender nonbinary, with an average age of 15 (SD 1.6) years. Almost all (93%) patients reported menstrual-related dysphoria. Most (88%) were interested in menstrual suppression. The most common reasons for desiring suppression were achievement of amenorrhea (97%) and improvement of menstrual-related dysphoria (63%)., Conclusions: Most gender diverse patients assigned female at birth reported dysphoria associated with menses and desired menstrual suppression. This information can encourage physicians to raise this topic and offer menstrual management for gender diverse patients who experience distress related to menses, especially for those who are not ready for or do not desire gender-affirming hormonal treatment. Future research is needed to better understand patients' experiences with menses and to determine the optimal menstrual management methods. This could be an important intervention to improve outcomes for this vulnerable population., (Copyright © 2022. Published by Elsevier Inc.)
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- 2022
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38. Parental post-traumatic stress, overprotective parenting, and emotional and behavioural problems for children with critical congenital heart disease.
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McWhorter LG, Christofferson J, Neely T, Hildenbrand AK, Alderfer MA, Randall A, Kazak AE, and Sood E
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- Child, Humans, Parenting psychology, Parents psychology, Heart Defects, Congenital, Problem Behavior psychology, Stress Disorders, Post-Traumatic etiology
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Objective: To examine relationships amongst parental post-traumatic stress symptoms, parental post-traumatic growth, overprotective parenting, and child emotional/behavioural problems in families of children with critical CHD., Method: Sixty parents (15 fathers) of children aged 1-6 completed online questionnaires assessing parental post-traumatic stress symptoms and post-traumatic growth, overprotective parenting, and child emotional/behavioural problems. Bivariate correlations and mediational analyses were conducted to evaluate overprotective parenting as a mediator of the association between parental post-traumatic stress symptoms and child emotional/behavioural problems., Results: Parents reported significant post-traumatic stress symptoms, with over 18% meeting criteria for post-traumatic stress disorder and 70% meeting criteria in one or more clusters. Parental post-traumatic growth was positively correlated with intrusion (r = .32, p = .01) but it was not associated with other post-traumatic stress symptom clusters. Parental post-traumatic stress symptoms were positively associated with overprotective parenting (r = .37, p = .008) and total child emotional/behavioural problems (r = .29, p = .037). Overprotective parenting was positively associated with total child emotional/behavioural problems (r = .45, p = .001) and fully mediated the relationship between parental post-traumatic stress symptoms and child emotional/behavioural problems., Conclusion: Overprotective parenting mediates the relationship between parental post-traumatic stress symptoms and child emotional and behavioural problems in families of children with CHD. Both parental post-traumatic stress symptoms and overprotective parenting may be modifiable risk factors for poor child outcomes. This study highlights the need for interventions to prevent or reduce parental post-traumatic stress symptoms and to promote effective parenting following a diagnosis of CHD.
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- 2022
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39. Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.
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Sood E, Gramszlo C, Perez Ramirez A, Braley K, Butler SC, Davis JA, Divanovic AA, Edwards LA, Kasparian N, Kelly SL, Neely T, Ortinau CM, Riegel E, Shillingford AJ, and Kazak AE
- Abstract
Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems. Participants were 41 diverse parents of children with prenatally diagnosed CHD across the 8 health systems. Qualitative data were collected through online crowdsourcing and quantitative data were collected through electronic surveys to inform intervention co-design. Phases of intervention co-design were: (I) Engage stakeholders in selection of intervention goals/outcomes; (II) Engage stakeholders in selection of intervention elements; (III) Obtain stakeholder input to increase intervention uptake/utility; (IV) Obtain stakeholder input on aspects of intervention design; and (V) Obtain stakeholder input on selection of outcome measures. Parent participants anticipated the resulting intervention, HEARTPrep , would be acceptable, useful, and feasible for parents expecting a baby with CHD. This model of intervention co-design could be used for the development of healthcare interventions across chronic diseases., Competing Interests: Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)
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- 2022
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40. Medical factors associated with caregiver intention to vaccinate their children against COVID-19.
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Phan TT, Enlow PT, Wong MK, Lewis AM, Kazak AE, and Miller JM
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Objective: To describe medical factors that are associated with caregiver intention to vaccinate their children against COVID-19., Methods: We conducted a cross-sectional study of families receiving primary care in a mid-Atlantic pediatric healthcare system, linking caregiver-reported data from a survey completed March 19 to April 16, 2021 to comprehensive data from the child's EHR., Results: 513 families were included (28% Black, 16% Hispanic, 44% public insurance, 21% rural, child age range 0-21 years). 44% of caregivers intended to vaccinate their children against COVID-19, while 41% were not sure and 15% would not. After adjusting for socio-demographics, the only medical factors that were associated with caregiver COVID-19 vaccine hesitancy were caregiver COVID-19 vaccination status at the time of the survey (aOR 3.0 if the caregiver did not receive the vaccine compared to those who did, 95% CI 1.7-5.3) and child seasonal influenza immunization history (aOR 3.3 if the child had not received the influenza vaccine in the 2020-2021 season compared to those who did, 95% CI 2.0-5.4). Other medical factors, including family medical experiences with COVID-19, other child immunization history, child health conditions like obesity and asthma, and family engagement with the healthcare system were not associated with caregiver intention to vaccinate their children against COVID-19., Conclusions: This study highlights important factors, such as general attitudes towards vaccines and understanding of COVID-19 morbidity risk factors, that healthcare providers should address when having conversations with families about the COVID-19 vaccine., Competing Interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Thao-Ly T. Phan reports financial support was provided by National Institute of General Medical Sciences., (© 2022 The Authors.)
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41. Validation of the COVID-19 Exposure and Family Impact Scales.
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Enlow PT, Phan TT, Lewis AM, Hildenbrand AK, Sood E, Canter KS, Vega G, Alderfer MA, and Kazak AE
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- Adolescent, Child, Factor Analysis, Statistical, Humans, Pandemics, Psychometrics, Reproducibility of Results, SARS-CoV-2, COVID-19
- Abstract
Objective: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed in Spring 2020 to assess effects of the COVID-19 pandemic on families and caregivers. Initial psychometric properties were promising. The current study examined the factor structure and evaluated convergent and criterion validity of the CEFIS in a new sample., Methods: In October and November 2020, caregivers (N = 2,531) of youth (0-21 years) scheduled for an ambulatory care visit at Nemours Children's Hospital, Delaware completed the CEFIS and measures of convergent (PROMIS Global Mental Health Scale, Family Assessment Device) and criterion validity (PTSD Checklist-Civilian). Confirmatory factor analysis was used to examine the factor structure of the CEFIS. Bivariate correlations and logistic regression were used to examine convergent and criterion validity., Results: Factor analysis supported the original six- and three-factor structures for the Exposure and Impact scales, respectively. Second-order factor analyses supported the use of Exposure, Impact, and Distress total scores. Higher scores on the CEFIS Exposure, Impact, and Distress scales were associated with increased mental health concerns and poorer family functioning. Higher scores on all CEFIS scales were also associated with greater odds of having clinically significant posttraumatic stress symptoms., Conclusions: The CEFIS is a psychometrically sound measure of the impact of the COVID-19 pandemic on family and caregiver functioning and may also be useful in identifying families who would benefit from psychological supports., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2022
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42. Validating the Factor Structure of the Psychosocial Assessment Tool Using Internet-Based Data.
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Enlow PT, Lewis AM, Scialla MA, Hwang WT, and Kazak AE
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- Adolescent, Child, Humans, Internet, Psychometrics, Reproducibility of Results, Risk Assessment, Stress, Psychological psychology, Neoplasms psychology, Tool Use Behavior
- Abstract
Objective: The Psychosocial Assessment Tool (PAT) is a well-validated, brief screener of family psychosocial risk. Since 2014 a web-based version of the PAT (WebPAT) has been available for use by clinicians and researchers, but the psychometric properties have not been examined. The objective of this article was to examine the factor structure and internal consistency of the WebPAT, which was administered to caregivers of youth with cancer., Methods: The WebPAT was administered to 1,252 caregivers of youth with cancer across 29 institutions. Confirmatory factor analysis (CFA) was used to examine the factor structure of the WebPAT. Internal consistencies of the total and subscale scores were examined via the Kuder-Richardson 20 coefficient. The distribution of total PAT score across the three risk categories of the Pediatric Psychosocial Preventative Health Model (PPPHM) was also examined., Results: The CFA supported the original seven-factor structure of the PAT (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs). Internal consistencies were strong for the total PAT score and four subscales (Social Support, Child Problems, Sibling Problems, and Family Problems). The distribution of total PAT scores across PPPHM risk categories was consistent with prior research., Conclusions: The WebPAT is a psychometrically sound screener of psychosocial risk in families of youth with cancer. Healthcare providers can use the WebPAT to assess families' psychosocial risk and guide the provision of psychosocial care. Future research should evaluate the implementation of the PAT and identify barriers and facilitators to implementation., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2022
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43. Behavioral Health Diagnoses in Youth with Gender Dysphoria Compared with Controls: A PEDSnet Study.
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Nunes-Moreno M, Buchanan C, Cole FS, Davis S, Dempsey A, Dowshen N, Furniss A, Kazak AE, Kerlek AJ, Margolis P, Pyle L, Razzaghi H, Reirden DH, Schwartz B, Sequeira GM, and Nokoff NJ
- Subjects
- Adolescent, Anxiety epidemiology, Case-Control Studies, Child, Female, Gender Dysphoria psychology, Humans, Logistic Models, Male, Mood Disorders epidemiology, Neurodevelopmental Disorders epidemiology, Odds Ratio, Propensity Score, Risk Factors, Young Adult, Anxiety etiology, Gender Dysphoria complications, Mood Disorders etiology, Neurodevelopmental Disorders etiology
- Abstract
Objective: To assess the odds of a psychiatric or neurodevelopmental diagnosis among youth with a diagnosis of gender dysphoria compared with matched controls in a large electronic health record dataset from 6 pediatric health systems, PEDSnet. We hypothesized that youth with gender dysphoria would have higher odds of having psychiatric and neurodevelopmental diagnoses than controls., Study Design: All youth with a diagnosis of gender dysphoria (n = 4173 age at last visit 16.2 ± 3.4) and at least 1 outpatient encounter were extracted from the PEDSnet database and propensity-score matched on 8 variables to controls without gender dysphoria (n = 16 648, age at last visit 16.2 ± 4.8) using multivariable logistic regression. The odds of having psychiatric and neurodevelopmental diagnoses were examined using generalized estimating equations., Results: Youth with gender dysphoria had higher odds of psychiatric (OR 4.0 [95% CI 3.8, 4.3] P < .0001) and neurodevelopmental diagnoses (1.9 [1.7, 2.0], P < .0001). Youth with gender dysphoria were more likely to have a diagnosis across all psychiatric disorder subcategories, with particularly high odds of mood disorder (7.3 [6.8, 7.9], P < .0001) and anxiety (5.5 [5.1, 5.9], P < .0001). Youth with gender dysphoria had a greater odds of autism spectrum disorder (2.6, [2.2, 3.0], P < .0001)., Conclusions: Youth with gender dysphoria at large pediatric health systems have greater odds of psychiatric and several neurodevelopmental diagnoses compared with youth without gender dysphoria. Further studies are needed to evaluate changes in mental health over time with access to gender affirming care., (Copyright © 2021 Elsevier Inc. All rights reserved.)
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- 2022
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44. A community-based trial of a psychosocial eHealth intervention for parents of children with cancer.
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Canter KS, McIntyre R, Babb R, Ramirez AP, Vega G, Lewis A, Bottrell C, Lawlor C, and Kazak AE
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- Adolescent, Child, Child, Preschool, Humans, Infant, Infant, Newborn, Caregivers, Neoplasms therapy, Parents, Psychosocial Intervention, Telemedicine
- Abstract
Background: The Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents and caregivers of children with cancer (parents), was delivered in a community-based psychosocial oncology center. Primary endpoints were intervention acceptability, feasibility, and accessibility, with a secondary exploratory focus on psychosocial outcomes., Procedure: Oncology therapists in a psychosocial oncology center were trained in eSCCIP delivery. Participants were eligible for participation if they were the primary caregiver of a child with cancer between the ages 0 and 17, could read and write in English, and had reliable internet access to complete eSCCIP. Surveys were administered electronically at baseline and post intervention to evaluate study endpoints. Effect sizes (Cohen's d) were computed for exploratory psychosocial outcomes. Nineteen parents completed the intervention., Results: Parents rated eSCCIP as highly acceptable, feasible, and accessible. A large clinical effect was detected for acute distress (d = 0.79). Moderate clinical effects were reported for overall posttraumatic stress disorder (PTSD) symptoms (d = 0.37), negative mood/cognitions (d = 0.59), and symptoms of anxiety (d = 0.48)., Conclusions: Results indicate that eSCCIP is an acceptable, feasible, and accessible psychosocial intervention for parents. Exploratory analyses suggest that participation in eSCCIP may contribute to decreases in acute distress, symptoms of anxiety, and symptoms of PTSD., (© 2021 Wiley Periodicals LLC.)
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- 2022
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45. Coping strategies used by mothers and fathers following diagnosis of congenital heart disease.
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Demianczyk AC, Bechtel Driscoll CF, Karpyn A, Shillingford A, Kazak AE, and Sood E
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- Adaptation, Psychological, Adult, Child, Child, Preschool, Female, Humans, Parenting, Parents, Pregnancy, Stress, Psychological diagnosis, Stress, Psychological etiology, Heart Defects, Congenital, Mothers
- Abstract
Background: Parents of children with congenital heart disease (CHD) exhibit high rates of mental health difficulties, which can influence child developmental and behavioural outcomes. While extensive research has focused on CHD-related stressors that contribute to parental mental health difficulties, few studies have investigated parental coping strategies that may mitigate or heighten risk. This study aimed to identify parental coping strategies following diagnosis of CHD and compare use of coping strategies among different groups (mothers vs. fathers; prenatal vs. postnatal diagnosis)., Methods: A diverse sample of 34 parents (20 mothers and 14 fathers) of young children with CHD participated in semistructured interviews focused on their responses to CHD-related stressors. Coping strategies were identified from qualitative data and categorized according to the COPE Inventory, an instrument that assesses common adult responses to stress. Coping strategies deemed as unique to parenting a critically ill child were identified. χ
2 and independent sample t tests evaluated group differences., Results: Parents described using between 1 and 10 different adaptive and maladaptive strategies measured by the COPE Inventory. Most parents (82.35%) also described coping strategies that may be unique to parenting a critically ill child. Mothers were more likely than fathers to report a focus on and venting of emotions (70% vs. 21.43%) and behavioural disengagement (25% vs. 0%). Compared with parents receiving a postnatal CHD diagnosis, those receiving a prenatal diagnosis described a greater variety of coping strategies (6.23 vs. 4.52) and more often reported positive reinterpretation and growth (69.23% vs. 14.29%), behavioural disengagement (38.46% vs. 0%) and denial (38.46% vs. 0%)., Conclusions: Parents of children with CHD utilize a variety of coping strategies, some of which are maladaptive. Interventions tailored to the needs of mothers and fathers of young children with CHD, including those receiving a postnatal diagnosis, are needed to promote adaptive coping and optimize family psychosocial outcomes., (© 2021 John Wiley & Sons, Ltd.)- Published
- 2022
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46. Disparities in Delaware Caregiver Beliefs about the COVID-19 Vaccine for their Children.
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Phan TT, Enlow PT, Wong MK, Lewis AM, Kazak AE, and Miller JM
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Objective: To describe sociodemographic disparities in caregiver beliefs about the COVID-19 vaccine for their children., Methods: This was a cross-sectional study, linking caregiver-reported data to geocoded sociodemographic data from child EHRs. Caregivers of children receiving care in a Delaware pediatric healthcare system were invited to complete a survey about COVID-19 vaccine beliefs from March 19 to April 16, 2021., Results: 1499 caregivers participated (18% Black, 11% Hispanic, 32% public insurance, 12% rural). 54% of caregivers intended to vaccinate their children, while 34% were unsure and 12% would not. Caregivers of younger children (aOR 3.70, CI 2.36-5.79), Black children (aOR 2.11, CI 1.50-2.96), and from disadvantaged communities (aOR 1.59, CI 1.05-2.42) were more likely to be unsure and not vaccinate their children. Caregivers from rural communities were more likely not to vaccinate their children (aOR 2.51, CI 1.56-4.05). Fewer caregivers of younger children, Black children, and from disadvantaged communities believed in the safety or efficacy of the vaccines (p < 0.001), while fewer caregivers of younger children and from rural communities believed in their children's susceptibility to COVID-19 or risk of getting severe disease from COVID-19 (p < 0.05). While the majority (72%) of caregivers were influenced by health experts, fewer from communities of color and disadvantaged communities were (p<0.001)., Conclusions: Caregivers of younger children and from communities of color, rural communities, and disadvantaged communities in Delaware expressed more COVID-19 vaccine hesitancy., Policy Implications: This study explores beliefs of different communities in Delaware, which are important to tailoring public health messaging and strategies to increase vaccine uptake in these communities.
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- 2021
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47. Behavioral Health Diagnoses in Youth with Differences of Sex Development or Congenital Adrenal Hyperplasia Compared with Controls: A PEDSnet Study.
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Sewell R, Buchanan CL, Davis S, Christakis DA, Dempsey A, Furniss A, Kazak AE, Kerlek AJ, Magnusen B, Pajor NM, Pyle L, Pyle LC, Razzaghi H, Schwartz BI, Vogiatzi MG, and Nokoff NJ
- Subjects
- Adolescent, Adrenal Hyperplasia, Congenital complications, Case-Control Studies, Child, Child Behavior Disorders diagnosis, Child Behavior Disorders epidemiology, Child Behavior Disorders etiology, Child, Preschool, Databases, Factual, Developmental Disabilities diagnosis, Developmental Disabilities epidemiology, Developmental Disabilities etiology, Disorders of Sex Development complications, Electronic Health Records, Female, Humans, Infant, Infant, Newborn, Logistic Models, Male, Mental Disorders diagnosis, Mental Disorders epidemiology, Neurodevelopmental Disorders diagnosis, Neurodevelopmental Disorders epidemiology, Neurodevelopmental Disorders etiology, Odds Ratio, Propensity Score, Risk Factors, Adrenal Hyperplasia, Congenital psychology, Disorders of Sex Development psychology, Mental Disorders etiology
- Abstract
Objective: To evaluate the odds of a behavioral health diagnosis among youth with differences of sex development (DSD) or congenital adrenal hyperplasia (CAH) compared with matched controls in the PEDSnet database., Study Design: All youth with a diagnosis of DSD (n = 1216) or CAH (n = 1647) and at least 1 outpatient encounter were extracted from the PEDSnet database and propensity-score matched on 8 variables (1:4) with controls (n = 4864 and 6588, respectively) using multivariable logistic regression. The likelihood of having behavioral health diagnoses was examined using generalized estimating equations., Results: Youth with DSD had higher odds of a behavioral health diagnosis (OR, 1.7; 95% CI, 1.4-2.1; P < .0001) and neurodevelopmental diagnosis (OR, 1.7; 95% CI, 1.4, 2.0; P < .0001) compared with matched controls. Youth with CAH did not have an increased odds of a behavioral health diagnosis (OR, 1.0; 95% CI, 0.9, 1.1; P = .9) compared with matched controls but did have higher odds of developmental delay (OR, 1.8; 95% CI, 1.4, 2.4; P < .0001)., Conclusions: Youth with DSD diagnosis have higher odds of a behavioral health or neurodevelopmental diagnosis compared with matched controls. Youth with CAH have higher odds of developmental delay, highlighting the need for screening in both groups., (Copyright © 2021 Elsevier Inc. All rights reserved.)
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- 2021
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48. Editor's vale dictum: American Psychologist 2016-2021.
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Kazak AE
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- Humans, United States, Societies, Scientific
- Abstract
In this value dictum, or editorial farewell, the author says it has been a great honor to serve as the Editor-in-Chief (EIC) of American Psychologist (AP ) for the past 6 years. The article is organized in four sections. The first looks at how the current editorial term fits within the mission and history of AP and describes significant changes enacted during this editorial era intended to further advance the scholarly impact of AP as a leading journal in the field of psychology. Second, the article is a record of the editorial metrics of the journal, noting our performance and accomplishments in terms of traditional measures of journal impact, such as number of submissions, editorial lag, and Impact Factors. This report serves as a historical record of the journal's publication activities. Third, this article provides ideas about how editorial processes and content reflected changes in psychology, publishing, the American Psychological Association (APA), and most importantly the broader social context in which we live. And, finally, the author concludes by expressing her deep appreciation to the many people who have contributed to the successes of AP throughout her editorial term. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
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- 2021
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49. Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer.
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Deatrick JA, Kazak AE, Madden RE, McDonnell GA, Okonak K, Scialla MA, and Barakat LP
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Background: Children with cancer and their families are at risk for short- and long-term psychosocial difficulties. Screening for psychosocial risk remains inconsistent, leading to inequitable access to psychosocial services. The Psychosocial Assessment Tool (PAT) is an evidence-based caregiver report screener of family psychosocial risk ready for implementation in a nationwide cluster randomized trial that will test two implementation strategies across 18 pediatric cancer centers. The current study, conducted in preparation for the trial, solicited the perspectives of key stakeholders about two proposed implementation strategies identified during previous research which focus on health equity and screening of all families (universal screening). Results were used to refine the implementation strategies for testing in the subsequent trial., Methods: Semi-structured interviews with 19 key stakeholders (parents, health care providers, pediatric oncology organizations, and pediatric healthcare leaders) were conducted regarding the two implementation strategies. Strategy I is a training webinar; Strategy II is training + implementation enhanced resources, which includes a champion at each site and monthly peer support consultation calls. Data were analyzed using directed content analysis with deductively derived codes based on the Interactive Systems Framework and inductive codes based on emerging data., Results: Stakeholder interviews provided rich data to rigorously modify the proposed implementation strategies. Implementation strategies were modified in consistent with these recommendations: engaging providers by framing family psychosocial screening as an opportunity for more efficient and effective practice; setting clear expectations about the importance of screening 100% of children and their families to achieve the goal of universal screening, equity of care, and reduction of disparities; and adapting successful strategies for systematic implementation of screening to ensure optimal engagement with children and their families throughout their care., Conclusions: Stakeholder input strengthened implementation strategies by suggesting modifications that emphasized health equity and reduction in health disparities. Using implementation science methods to build on a long-standing program of research provided practical insights about immediate needs of families and historical insights regarding structural inequities such as language differences and access to services. Resulting strategies address all levels of the social ecology for children's cancer care, including the patient, family, provider, healthcare system, and community., Trial Registration: NCT04446728 June 23, 2020.
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- 2021
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50. COVID-19 Exposure and Family Impact Scales: Factor Structure and Initial Psychometrics.
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Kazak AE, Alderfer M, Enlow PT, Lewis AM, Vega G, Barakat L, Kassam-Adams N, Pai A, Canter KS, Hildenbrand AK, McDonnell GA, Price J, Schultz C, Sood E, and Phan TL
- Subjects
- Caregivers, Child, Humans, Psychometrics, Reproducibility of Results, SARS-CoV-2, Surveys and Questionnaires, COVID-19
- Abstract
Objective: In response to the rapidly unfolding coronavirus disease 2019 (COVID-19) pandemic in spring 2020, we developed a caregiver-report measure to understand the extent to which children and families were exposed to events related to COVID-19 and their perceptions of its impact. This article reports on the factor structure and psychometric properties of this measure., Methods: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 1805 caregivers recruited from 28 programs at 15 institutions across the United States were collected from May-September 2020. We examined the underlying structure of the CEFIS using exploratory factor analyses and its internal consistency (Cronbach's alpha)., Results: Participants reported a range of COVID-19-related events (M = 8.71 events of 25). On the bidirectional 4-point impact scale, mean scores were mostly above the midpoint, indicating a slightly negative impact. Cronbach's alpha was excellent for Exposure (α = .80) and Impact (α = .92). Factor analysis identified six factors for Exposure (COVID-19 experiences, Access to essentials, Disruptions to living conditions, Loss of income, Family caregiving and activities, and Designation as an essential worker). There were three factors for Impact (Personal well-being, Family interactions, and Distress)., Discussion: The CEFIS has strong factors assessing Exposure to events related to COVID-19, and the Impact of these events on families of children in pediatric healthcare. These initial validation data support use of the CEFIS for measuring the effect of the pandemic., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
- Published
- 2021
- Full Text
- View/download PDF
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