First name
Lamia
Middle name
P
Last name
Barakat

Title

Health-Related Quality of Life at Diagnosis for Pediatric Thyroid Cancer Patients.

Year of Publication

2022

Date Published

11/2022

ISSN Number

1945-7197

Abstract

CONTEXT: Pediatric thyroid cancer (TC) incidence rates are increasing, yet TC has one of the highest survival rates. Despite increased prevalence, little is known about youth adjustment to TC, particularly compared to other pediatric cancers.

OBJECTIVE: The current study sought to describe health-related quality of life (HRQoL) in pediatric TC patients early after diagnosis compared to other pediatric cancer patients and healthy youth and examine predictors of HRQoL.

DESIGN: Patients completed psychosocial questionnaires as part of a clinic-based screening program around time of surgery. TC HRQoL was compared to other pediatric cancer and healthy youth reported norms. Clinical and demographic data extracted from the medical record were examined for predictors of HRQoL.

SETTING: Pediatric Thyroid Center.

PATIENTS AND OTHER PARTICIPANTS: Pediatric TC patients (ages 8.5-23.4 years) and their caregivers.

MAIN OUTCOME MEASURES: Pediatric Quality of Life Inventory (HRQoL) and distress thermometer.

RESULTS: Findings evidenced significantly higher HRQoL for TC patients than other pediatric cancers for all but emotional and school functioning. Compared to healthy youth, TC patients reported significantly lower functioning, except comparable social functioning. No significant differences in HRQoL were identified based on disease severity, thyroid disease history, or treatment. Patient distress was associated with HRQoL.

CONCLUSIONS: The findings suggest general resilience in TC patients compared to youth with other cancers, yet worse HRQoL than peers. Early universal screening is warranted due to a short TC treatment regimen. If administrative barriers preclude comprehensive screening, the single-item distress thermometer may identify patients for further comprehensive screening.

DOI

10.1210/clinem/dgac648

Alternate Title

J Clin Endocrinol Metab

PMID

36330655

Title

Trajectories of Pain Severity and Interference Among Adolescent and Young Adults With Cancer: A Microlongitudinal Study.

Year of Publication

2022

Number of Pages

443-450

Date Published

07/2022

ISSN Number

1536-5409

Abstract

OBJECTIVE: Cancer-related pain is a pervasive concern among adolescent and young adults (AYA) with cancer and is an emerging long-term health concern. Few studies have examined the complex contributions to pain among AYA. We aimed to fill a gap by (1) identifying subgroups of AYA with distinct patterns of pain severity and interference over time and (2) explore possible predictors of these patterns.

METHODS: Daily text messages over a 9-week period were used to model group-based trajectory analyses of pain severity and interference by identifying subgroups of AYA who experience common patterns of changes in pain. Demographic, medical, physical symptom burden, and psychological distress were examined as possible predictors of these patterns.

RESULTS: AYA were on average 16.93 years old and 2.5 years since diagnosis. Subgroups of AYA were identified for pain severity and interference over time: high variability (37.7%; 37.7%, respectively), consistent high pain (35.8%; 18.9%, respectively), and consistent low pain (26.4%; 43.4%, respectively). AYA with greater psychological distress were more likely to belong to the high consistent pain severity and interference groups. AYA with greater physical symptoms were more likely to belong to the high consistent pain interference group. No significant associations between demographic/medical characteristics and trajectory subgroups were found.

CONCLUSIONS: AYA with elevated physical and psychological symptoms were more likely to experience high consistent pain severity and pain interreference over time. Interventions aimed at reducing pain through focusing on teaching AYA how to alleviate physical symptoms and teaching coping skills to manage psychological distress may be beneficial.

DOI

10.1097/AJP.0000000000001041

Alternate Title

Clin J Pain

PMID

35686575

Title

Sociodemographics, Health Competence, and Transition Readiness Among Adolescent/Young Adult Cancer Survivors.

Year of Publication

2022

Date Published

2022 Apr 28

ISSN Number

1465-735X

Abstract

<p><strong>OBJECTIVE: </strong>Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer.</p>

<p><strong>METHODS: </strong>A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used.</p>

<p><strong>RESULTS: </strong>Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals.</p>

<p><strong>CONCLUSION: </strong>Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance.</p>

DOI

10.1093/jpepsy/jsac039

Alternate Title

J Pediatr Psychol

PMID

35482609

Title

COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults.

Year of Publication

2022

Date Published

2022 Apr 23

ISSN Number

1465-735X

Abstract

<p><strong>OBJECTIVE: </strong>To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA.</p>

<p><strong>METHODS: </strong>The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age.</p>

<p><strong>RESULTS: </strong>Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified.</p>

<p><strong>DISCUSSION: </strong>Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.</p>

DOI

10.1093/jpepsy/jsac036

Alternate Title

J Pediatr Psychol

PMID

35459946

Title

Understanding Adolescent and Young Adult 6-Mercaptopurine Adherence and mHealth Engagement During Cancer Treatment: Protocol for Ecological Momentary Assessment.

Year of Publication

2021

Number of Pages

e32789

Date Published

2021 Oct 22

ISSN Number

1929-0748

Abstract

<p><strong>BACKGROUND: </strong>Adolescents and young adults (AYAs) with cancer demonstrate suboptimal oral chemotherapy adherence, increasing their risk of cancer relapse. It is unclear how everyday time-varying contextual factors (eg, mood) affect their adherence, stalling the development of personalized mobile health (mHealth) interventions. Poor engagement is also a challenge across mHealth trials; an effective adherence intervention must be engaging to promote uptake.</p>

<p><strong>OBJECTIVE: </strong>This protocol aims to determine the temporal associations between daily contextual factors and 6-mercaptopurine (6-MP) adherence and explore the proximal impact of various engagement strategies on ecological momentary assessment survey completion.</p>

<p><strong>METHODS: </strong>At the Children's Hospital of Philadelphia, AYAs with acute lymphoblastic leukemia or lymphoma who are prescribed prolonged maintenance chemotherapy that includes daily oral 6-MP are eligible, along with their matched caregivers. Participants will use an ecological momentary assessment app called ADAPTS (Adherence Assessments and Personalized Timely Support)-a version of an open-source app that was modified for AYAs with cancer through a user-centered process-and complete surveys in bursts over 6 months. Theory-informed engagement strategies will be microrandomized to estimate the causal effects on proximal survey completion.</p>

<p><strong>RESULTS: </strong>With funding from the National Cancer Institute and institutional review board approval, of the proposed 30 AYA-caregiver dyads, 60% (18/30) have been enrolled; of the 18 enrolled, 15 (83%) have completed the study so far.</p>

<p><strong>CONCLUSIONS: </strong>This protocol represents an important first step toward prescreening tailoring variables and engagement components for a just-in-time adaptive intervention designed to promote both 6-MP adherence and mHealth engagement.</p>

<p><strong>INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): </strong>DERR1-10.2196/32789.</p>

DOI

10.2196/32789

Alternate Title

JMIR Res Protoc

PMID

34677129

Title

Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers.

Year of Publication

2021

Number of Pages

10497323211037654

Date Published

2021 Aug 12

ISSN Number

1049-7323

Abstract

<p>Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider perspectives. Engagement in decision-making against the backdrop of normative developmental processes of acquiring autonomy and gaining independence contributes to the complexity of decision-making. Semi-structured qualitative interviews from 11 AYA and caregiver dyads and eight oncology providers examined decision-making processes with specific attention to the role of shared decision-making, cognitive and emotional processes, and coping with the decision-making experience. Five decision-making patterns were identified, with and most commonly described. Utilizing hypothesis coding, AYA and caregivers explained how cognitive (i.e., pros/cons) and emotional (i.e., shock and fear of missing out) processes influenced cancer-related decisions. Coping strategies provided clarity and respite when engaged in decision-making. Our findings illuminate important implications for how to best support decision-making among AYA and caregivers, including the role oncology providers can play during decision-making.</p>

DOI

10.1177/10497323211037654

Alternate Title

Qual Health Res

PMID

34382889

Title

Association of psychological distress and religious coping tendencies in parents of children recently diagnosed with cancer: A cross-sectional study.

Year of Publication

2021

Number of Pages

e28991

Date Published

2021 Apr 12

ISSN Number

1545-5017

Abstract

<p><strong>PURPOSE: </strong>Parents of children with cancer exhibit high levels of psychological distress. Parents of children with serious illness report religion and spirituality are important coping resources. We sought to describe characteristics of religion, religious coping, social support, and resiliency in parents of children newly diagnosed with cancer and examine associations between psychological distress and self-reported religious coping, religiosity, resiliency, and social support.</p>

<p><strong>PATIENTS AND METHODS: </strong>Cross-sectional observational study of 100 parents of 81 unique children recently diagnosed with cancer. Parents provided demographic information and completed measures of psychological distress, importance of religion, religious coping, resiliency, and social support. Patients' type of tumor and intensity of treatment were collected by medical record abstraction.</p>

<p><strong>RESULTS: </strong>Compared to nationally reported data for adults, parents of children with cancer reported high scores for psychological distress but similar levels of religiosity, religious coping, and resiliency. Negative religious coping (feelings of negativity related to the divine) was associated with higher levels of psychological distress. This effect was most prominent in parents who reported the highest levels of religiosity. Positive religious coping, religiosity, and social support were not associated with levels of psychological distress.</p>

<p><strong>DISCUSSION: </strong>Findings confirm high levels of distress for parents of children with cancer. Negative religious coping was associated with higher levels of psychological distress but positive religious coping, religiosity, and other coping factors were not found to be significantly associated with distress. Further assessment of negative religious coping to inform interventions to promote resiliency is warranted as they may impact parental decision-making and care.</p>

DOI

10.1002/pbc.28991

Alternate Title

Pediatr Blood Cancer

PMID

33844421

Title

Contextual Predictors of Engagement in a Tailored mHealth Intervention for Adolescent and Young Adult Cancer Survivors.

Year of Publication

2021

Date Published

2021 Mar 01

ISSN Number

1532-4796

Abstract

<p><strong>BACKGROUND: </strong>Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools.</p>

<p><strong>PURPOSE: </strong>Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer.</p>

<p><strong>METHODS: </strong>One hundred and ten AYA survivors (M age = 20.5, 43% female, 30% racial/ethnic minority) were randomized to receive a disease self-management app that delivered 1-2 tailored messages/day for 16 weeks, and contained a survivorship care plan (SCP). Demographic, disease, psychosocial, and setting characteristics were examined as predictors of three objective engagement outcomes: (a) % of active app days, (b) % of messages read, and (c) viewed SCP in the app versus not. A subsample (n = 10) completed qualitative interviews to further assess engagement barriers.</p>

<p><strong>RESULTS: </strong>Self-reported uninterrupted app access (β = -0.56, p &lt; .001), iPhone (vs. Android) ownership (β = 0.30, p &lt; .001), and receiving the intervention in the summer (β = -0.20, p = .01) predicted more active days. Lower depressed mood (β = -0.30, p = .047) and uninterrupted app access (β = -0.50, p &lt; .001) predicted more messages read. Qualitatively, technical glitches and competing priorities were described as engagement barriers, whereas certain types of messages (e.g., health goal messages) were perceived as engaging. Among participants who had uninterrupted app access (n = 76), higher baseline motivation to change, better health perceptions, using the app during the summer, and iPhone ownership predicted higher engagement.</p>

<p><strong>CONCLUSIONS: </strong>Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials.</p>

<p><strong>CLINICALTRIALS.GOV IDENTIFIER: </strong>NCT03363711.</p>

DOI

10.1093/abm/kaab008

Alternate Title

Ann Behav Med

PMID

33674863

Title

Association of Demographic and Cancer-Specific Factors on Health Behavior Recommendations Specific to Cancer Prevention and Control Among Adolescent and Young Adult Survivors of Childhood Cancer.

Year of Publication

2020

Date Published

2020 Nov 18

ISSN Number

2156-535X

Abstract

<p>Adolescent and young adult survivors of childhood cancer (AYA) are at risk for long-term health problems that are exacerbated by not meeting health behavior recommendations (e.g., exercise). To identify AYA at risk for not meeting health behavior recommendations, we explored demographic (e.g., age) and cancer-specific (e.g., intensity of treatment) factors associated with not meeting specific health behavior recommendations that have implications for cancer prevention and control. Regression (linear/binary) was used to examine demographic and cancer-specific associates regarding fruit/vegetable intake, binge drinking, sleep duration, sunscreen use, tobacco use, and physical activity among 307 AYA (M = 20.33, range = 15-34) across three combined studies, treated at a pediatric cancer center. Health behavior measures were adapted from The Health Behaviors Survey and the Youth Risk Behavior Surveillance System questionnaire. AYA in general did not meet health behavior recommendations. Compared with AYA with public insurance, AYA with private insurance ( = -0.19,  &lt; 0.01) were more likely to meet multiple health behavior recommendations. AYA at greatest risk for not meeting specific health behaviors were more likely to be diagnosed in middle childhood (11.35) compared with early childhood (8.38), be closer to diagnosis (8.77 vs. 11.76) and closer to treatment completion (6.97 vs. 9.91), and have a solid tumor (32.7%) compared with a brain tumor (10.6%). Not meeting health behavior recommendations is common among AYA survivors of childhood cancer. Early education in the context of survivorship care is critical to provide teachable moments to AYA; such interventions might impact future long-term health and reduce risk for secondary cancers.</p>

DOI

10.1089/jayao.2020.0130

Alternate Title

J Adolesc Young Adult Oncol

PMID

33211609

Title

Family Factors and Health-related Quality of Life within Six Months of Completion of Childhood Cancer Treatment.

Year of Publication

2020

Date Published

2020 Nov 12

ISSN Number

1099-1611

Abstract

<p><strong>OBJECTIVE: </strong>The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment-related variables, family factors (family functioning, caregiver health-related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors.</p>

<p><strong>METHODS: </strong>154 caregivers (of patients ages 0-18 years) and 52 youth (ages 7-18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within six months following treatment completion. Electronic health records were reviewed for cancer and treatment-related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors.</p>

<p><strong>RESULTS: </strong>Family factors were associated with self- and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self-reported neurocognitive difficulties and HRQL were not supported.</p>

<p><strong>CONCLUSIONS: </strong>Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment. This article is protected by copyright. All rights reserved.</p>

DOI

10.1002/pon.5592

Alternate Title

Psychooncology

PMID

33180350

WATCH THIS PAGE

Subscription is not available for this page.