First name
Anne
Middle name
E
Last name
Kazak

Title

Multicenter Analysis of Cardiometabolic-Related Diagnoses in Transgender and Gender Diverse Youth: a PEDSnet study.

Year of Publication

2022

Date Published

08/2022

ISSN Number

1945-7197

Abstract

CONTEXT: Studies on cardiometabolic health in transgender and gender diverse youth (TGDY) are limited to small cohorts.

OBJECTIVE: 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).

DESIGN: 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.

SETTING: Six PEDSnet sites.

PATIENTS OR OTHER PARTICIPANTS: TGDY (n=4,172) were extracted from PEDSnet and propensity-score matched on 8 variables to controls (n=16,648).

INTERVENTION(S): N/A.

MAIN OUTCOME MEASURE(S): 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% confidence interval 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 [1.3-2.3], 3.7 [2.1-6.7], respectively) and liver dysfunction (1.5 [1.1-1.9], 2.5 [1.4-4.3]) than TGDY not prescribed GAHT. TGDY with a testosterone prescription alone had higher odds of overweight/obesity (1.8 [1.5-2.1]) and hypertension (1.6 [1.2-2.2]) than those not prescribed testosterone. Estradiol and GnRHa alone were not associated with greater odds of cardiometabolic-related diagnoses.

CONCLUSIONS: TGDY have increased odds of overweight/obesity compared to matched controls. Screening and tailored weight management, sensitive to the needs of TGDY, are needed.

DOI

10.1210/clinem/dgac469

Alternate Title

J Clin Endocrinol Metab

PMID

35945152

Title

Behavioral Health Diagnoses in Youth With Gender Dysphoria Compared with Controls: A PEDSnet Study.

Year of Publication

2021

Date Published

2021 Sep 24

ISSN Number

1097-6833

Abstract

<p><strong>OBJECTIVE: </strong>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 six pediatric health systems, PEDSnet. We hypothesized that youth with gender dysphoria would have higher odds of having psychiatric and neurodevelopmental diagnoses than controls.</p>

<p><strong>STUDY DESIGN: </strong>All youth with a diagnosis of gender dysphoria (n=4,173 age at last visit 16.2 + 3.4) and at least one 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.</p>

<p><strong>RESULTS: </strong>Youth with gender dysphoria had higher odds of psychiatric (OR: 4.0 [95% CI: 3.8, 4.3] P &lt; .0001) and neurodevelopmental diagnoses (1.9 [1.7, 2.0], p&lt;0.0001). Youth with gender dysphoria were more likely to have a diagnosis across all psychiatric disorder sub-categories, with particularly high odds of mood disorder (7.3 [6.8, 7.9], p&lt;0.0001) and anxiety (5.5 [5.1, 5.9], p&lt;0.0001). Youth with gender dysphoria had a greater odds of autism spectrum disorder (2.6, [2.2, 3.0], p&lt;0.0001).</p>

<p><strong>CONCLUSIONS: </strong>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.</p>

DOI

10.1016/j.jpeds.2021.09.032

Alternate Title

J Pediatr

PMID

34571022

Title

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

Year of Publication

2017

Number of Pages

983-994

Date Published

2017 Oct 01

ISSN Number

1465-735X

Abstract

<p><strong>Objective: </strong>The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods.</p>

<p><strong>Methods: </strong>Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART).</p>

<p><strong>Results: </strong>Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version.</p>

<p><strong>Conclusions: </strong>TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.</p>

DOI

10.1093/jpepsy/jsx095

Alternate Title

J Pediatr Psychol

PMID

29046041

Title

Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment.

Year of Publication

2016

Date Published

2016 Jun 20

ISSN Number

1099-1611

Abstract

<p><strong>BACKGROUND: </strong>Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established. This study aimed to assess acceptability of screening for parents and evaluate associations between family risk factors and patient HRQL in the first year post-diagnosis.</p>

<p><strong>PROCEDURE: </strong>Sixty-seven parents of children with cancer completed the Psychosocial Assessment Tool (family risk), Distress Thermometer (caregiver distress), Posttraumatic Stress Disorder Checklist-Civilian 6 (caregiver traumatic stress), PedsQL 4.0 (parent-proxy report of patient HRQL) and four acceptability questions via a tablet (iPad).</p>

<p><strong>RESULTS: </strong>Patients (Mage = 9.5 SD = 5.5&nbsp;years) were equally distributed across major pediatric cancer diagnoses. The majority of parents endorsed electronic screening as acceptable (70%-97%). Patient gender, diagnosis, intensity of treatment and time since diagnosis were not significantly correlated with family risk, caregiver distress, traumatic stress, or patient HRQL. The full regression model predicting total HRQL was significant (R(2)  = .42, F(4,64) = 10.7, p = .000). Age (older) was a significant covariate, family risk and caregiver distress were significant independent predictors of poorer total HRQL. The full regression models for physical and psychosocial HRQL were significant; age and caregiver distress were independent predictors of physical HRQL, and age and family risk were independent predictors of psychosocial HRQL.</p>

<p><strong>CONCLUSIONS: </strong>Screening is acceptable for families and important for identifying risk factors associated with poorer patient HRQL during childhood cancer treatment. Targeted interventions addressing family resource needs as well as parent distress identified through screening may be effective in promoting patient HRQL. Copyright © 2016 John Wiley &amp; Sons, Ltd.</p>

DOI

10.1002/pon.4171

Alternate Title

Psychooncology

PMID

27321897

Title

Psychosocial, health-promotion, and neurocognitive interventions for survivors of childhood cancer: a systematic review.

Year of Publication

2015

Number of Pages

130-48

Date Published

2015 Feb

ISSN Number

1930-7810

Abstract

<p><strong>OBJECTIVE: </strong>Survivors of childhood cancer must contend with a number of medical and psychosocial vulnerabilities after their cancer treatment ends. Interventions have been developed to alleviate or prevent adverse outcomes among this population. This systematic review summarizes the efficacy of psychosocial, health behavior, and neurocognitive interventions for survivors of pediatric cancer.</p>

<p><strong>METHOD: </strong>Multiple databases were searched for studies published between January 1970 and June 2013. Studies were coded by 2 raters for methodological quality using the Effective Public Health Practice Project quality assessment tool.</p>

<p><strong>RESULTS: </strong>Twenty-four interventions were identified (7 psychosocial, 10 health behavior, and 7 neurocognitive). Eleven were controlled trials, of which 7 achieved medium to large effect sizes. Survivor interest, as demonstrated by consent rates, was high for interventions that did not require travel.</p>

<p><strong>CONCLUSIONS: </strong>Interventions using delivery methods varying from traditional counseling to computers achieved moderate to strong efficacy and merit replication. Survivor needs related to transition to adult-oriented health care and school reentry were not addressed by existing interventions. This review also revealed the absence of health behavior interventions for survivors in middle childhood and late adolescence. Intervention formats that are cost-effective and reduce participant burden should be prioritized for further testing. To broaden the reach and appeal of interventions, alternative delivery methods, such as mobile phone software applications, should be evaluated.</p>

DOI

10.1037/hea0000119

Alternate Title

Health Psychol

PMID

25133839

Title

Posttraumatic growth in parents and pediatric patients.

Year of Publication

2014

Number of Pages

209-18

Date Published

2014 Feb

ISSN Number

1557-7740

Abstract

<p><strong>BACKGROUND: </strong>Pediatric medical experiences are potentially traumatic but may lead to psychological growth.</p>

<p><strong>OBJECTIVE: </strong>The study objective was to synthesize the published literature regarding posttraumatic growth (PTG) in parents and patients with serious pediatric illness (SPI) into a conceptual model.</p>

<p><strong>METHODS: </strong>We systematically searched MEDLINE, CINAHL, PsychInfo, and Sociological Abstracts in December 2012 to identify articles on stress or trauma caused by medical events with PTG as an outcome, reviewing articles pertaining to the pediatric population. We additionally reviewed articles outside pediatric medicine that described a model of PTG.</p>

<p><strong>RESULTS: </strong>Of the 605 articles identified, 55 met inclusion criteria, 26 of which examined parents or pediatric patients. Parents and children may experience PTG following medical trauma through a combination of cognitive and affective processing of their subjective experience. Components of SPI-PTG are unclear, but may include greater appreciation of life, improved interpersonal relationships, greater personal strength, recognition of new possibilities in one's life course, spiritual or religious growth, and reconstruction of a positive body image. Individual characteristics, and the level of social support, may affect the likelihood that SPI-PTG will occur. SPI-PTG in siblings and other family members has not been well studied.</p>

<p><strong>CONCLUSIONS: </strong>SPI-PTG is an important but understudied and inadequately understood phenomenon affecting children with SPI and their family members. Research should focus on clarifying SPI-PTG domains, creating measurement instruments, assessing SPI-PTG across the pediatric age range and among family members, and improving our understanding of and ability to positively intervene regarding the cognitive processes of rumination, sense making, and benefit finding.</p>

DOI

10.1089/jpm.2013.0280

Alternate Title

J Palliat Med

PMID

24443768

Title

Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study.

Year of Publication

2010

Number of Pages

831-9

Date Published

2010 Sep

ISSN Number

1538-3628

Abstract

<p><strong>OBJECTIVE: </strong>To test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders.</p>

<p><strong>DESIGN: </strong>Prospective cohort study.</p>

<p><strong>SETTING: </strong>Children's hospital and surrounding region.</p>

<p><strong>PARTICIPANTS: </strong>Thirty-three pediatric patients receiving palliative care consultative services who did not have LOI orders at time of cohort entry and their 43 parental adults.</p>

<p><strong>MAIN EXPOSURES: </strong>Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories.</p>

<p><strong>MAIN OUTCOME MEASURE: </strong>Enactment of an LOI order after entry into the cohort.</p>

<p><strong>RESULTS: </strong>During the 6 months of observation, 14 patients (42.4%) had an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order (adjusted odds ratio [AOR], 2.73; 95% confidence interval [CI], 1.04-7.22). Increased odds of LOI enactment were associated to nonsignificant degrees with lower levels of parental positive affect (AOR, 0.44; 95% CI, 0.17-1.12), higher levels of parental negative affect (AOR, 2.02; 95% CI, 0.98-4.16), and parental perceptions of worsening health over time (AOR, 1.72; 95% CI, 0.73-4.07).</p>

<p><strong>CONCLUSION: </strong>For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decision making.</p>

DOI

10.1001/archpediatrics.2010.146

Alternate Title

Arch Pediatr Adolesc Med

PMID

20819965

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