First name
Alexandra
Middle name
M
Last name
Psihogios

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

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

Daily text message assessments of 6-mercaptopurine adherence and its proximal contexts in adolescents and young adults with leukemia: A pilot study.

Year of Publication

2020

Number of Pages

e28767

Date Published

2020 Oct 18

ISSN Number

1545-5017

Abstract

<p><strong>BACKGROUND: </strong>This pilot study explored the feasibility and acceptability of implementing text-based assessments of oral chemotherapy adherence in adolescents and young adults (AYA) with leukemia.</p>

<p><strong>METHODS: </strong>AYA prescribed maintenance 6-mercaptopurine (6MP) received daily text message surveys and utilized an electronic pill bottle for 28&nbsp;days. Text surveys assessed 6MP adherence and contextual associates (eg, mood). Feasibility was defined by recruitment/retention rates, survey completion rates, cost, and technical issues. After the 28-day period, AYA completed an acceptability survey. Secondary analyses compared text survey and electronic pill bottle adherence rates, and explored the daily associations between contextual factors and 6MP nonadherence.</p>

<p><strong>RESULTS: </strong>Eighteen AYA enrolled (M age&nbsp;=&nbsp;18, range 15-22) and completed study procedures (100% recruitment and retention rates). Adherence survey completion rates were high (M&nbsp;=&nbsp;88.9%), the technology cost was $204.00, and there were few technical issues. AYA reported high satisfaction with the surveys and perceived them as a helpful medication reminder. While not significantly correlated, survey and electronic pill bottle adherence data converged on the majority of days (&gt;90%). Exploratory analyses showed that AYA were more likely to miss a dose of 6MP on weekends (OR&nbsp;=&nbsp;2.33, P&nbsp;=&nbsp;.048) and on days when their adherence motivation (OR&nbsp;=&nbsp;0.28, P&nbsp;=&nbsp;.047) and negative effect (OR&nbsp;=&nbsp;3.92, P&nbsp;=&nbsp;.02) worsened from their own typical functioning.</p>

<p><strong>CONCLUSIONS: </strong>For AYA with leukemia, daily text-based surveys are a feasible and acceptable method for delivering medication adherence assessments, and may operate as a short-term intervention. To develop personalized mobile health interventions, findings also highlighted the need to study time-varying predictors of 6MP nonadherence.</p>

DOI

10.1002/pbc.28767

Alternate Title

Pediatr Blood Cancer

PMID

33073479

Title

Adherence to Multiple Treatment Recommendations in Adolescents and Young Adults with Cancer: A Mixed Methods, Multi-Informant Investigation.

Year of Publication

2020

Date Published

2020 May 11

ISSN Number

2156-535X

Abstract

<p>This mixed methods study sought to assess adolescent and young adult (AYA) adherence to three cancer treatment recommendations (medications, diet, physical activity), and determine the individual, family, and health system factors associated with suboptimal adherence. In Stage 1, 72 AYA-caregiver dyads completed a validated adherence interview and surveys about individual and family functioning. Matched providers ( = 34 who reported on 61 AYAs) completed global adherence ratings through survey. In Stage 2, a subset ( = 31) completed qualitative interviews. Medication adherence was higher ( = 94.8%) than diet ( = 73.9%) and physical activity ( = 55.4%), although ≥50% demonstrated "Imperfect Adherence" for each subtask. Univariately, AYAs who missed a medication had more depressive symptoms, worse health-related quality of life (HRQOL), and more medication barriers; their families had more financial stress, worse family functioning, and lower self-efficacy. The odds of adhering to medications were lower with worse HRQOL (odds ratio [OR] = 1.08; 95% confidence interval [CI], 1.02-1.15) and family functioning (OR = 0.18; 95% CI, 0.04-0.91). The odds of adhering to physical activity and diet were lower with worse family functioning (OR = 0.09; 95% CI, 0.01-0.91) and more barriers (OR = 0.24, CI: 0.10-0.61), respectively. Qualitative themes further supported multilevel influences on AYA adherence. Adherence challenges were identified across medications, diet, and physical activity. Multilevel contextual factors were associated with suboptimal adherence, including poorer HRQOL and family functioning. Findings support the need to improve clinical adherence assessment and develop contextually tailored interventions.</p>

DOI

10.1089/jayao.2020.0013

Alternate Title

J Adolesc Young Adult Oncol

PMID

32392434

Title

Feasibility and Acceptability of a Pilot Tailored Text Messaging Intervention for Adolescents and Young Adults Completing Cancer Treatment.

Year of Publication

2019

Date Published

2019 Nov 11

ISSN Number

1099-1611

Abstract

<p><strong>PURPOSE: </strong>Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors.</p>

<p><strong>METHODS: </strong>Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n=31) or an AYA survivor handbook (n=30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received 1-2 health-related text messages per day over 16 weeks.</p>

<p><strong>RESULTS: </strong>THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability.</p>

<p><strong>CONCLUSIONS: </strong>Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.</p>

DOI

10.1002/pon.5287

Alternate Title

Psychooncology

PMID

31713265

Title

Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents.

Year of Publication

2019

Date Published

2019 Jul 04

ISSN Number

1932-2267

Abstract

<p><strong>PURPOSE: </strong>This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.</p>

<p><strong>METHODS: </strong>Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes.</p>

<p><strong>RESULTS: </strong>Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools.</p>

<p><strong>CONCLUSIONS: </strong>These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.</p>

<p><strong>IMPLICATIONS FOR CANCER SURVIVORS: </strong>Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.</p>

DOI

10.1007/s11764-019-00781-x

Alternate Title

J Cancer Surviv

PMID

31273639

Title

Text Message Responsivity in a 2-Way Short Message Service Pilot Intervention With Adolescent and Young Adult Survivors of Cancer.

Year of Publication

2019

Number of Pages

e12547

Date Published

2019 Apr 18

ISSN Number

2291-5222

Abstract

<p><strong>OBJECTIVE: </strong>Within a 2-way text messaging study in AYAs who recently completed treatment for cancer, we sought to evaluate text message responsivity across different types of text messages.</p>

<p><strong>METHODS: </strong>AYAs who recently completed treatment for cancer (n=26; mean age=16 years; 62% female, 16/26 participants) received 2-way text messages about survivorship health topics over a 16-week period. Using participants' text message log data, we coded responsivity to text messages and evaluated trends in responsivity to unprompted text messages and prompted text messages of varying content (eg, medication reminders, appointment reminders, and texts about personal experiences as a cancer survivor).</p>

<p><strong>RESULTS: </strong>Across prompted and unprompted text messages, responsivity rapidly decreased (P ≤.001 and =.01, respectively) and plateaued by the third week of the intervention. However, participants were more responsive to prompted text messages (mean responsivity=46% by week 16) than unprompted messages (mean responsivity=10% by week 16). They also demonstrated stable responsivity to certain prompted content: medication reminders, appointment reminders, goal motivation, goal progress, and patient experience texts.</p>

<p><strong>CONCLUSIONS: </strong>Our methodology of evaluating text message responsivity revealed important patterns of engagement in a 2-way text message intervention for AYA cancer survivors.</p>

DOI

10.2196/12547

Alternate Title

JMIR Mhealth Uhealth

PMID

30998225

Title

Family Functioning and Medical Adherence Across Children and Adolescents With Chronic Health Conditions: A Meta-Analysis.

Year of Publication

2018

Date Published

2018 Jul 02

ISSN Number

1465-735X

Abstract

<p><strong>Objectives: </strong>A meta-analysis examined family functioning and medical adherence in children and adolescents with chronic health conditions. Family functioning was evaluated at the level of the family unit, as well as parent-child interactions.</p>

<p><strong>Methods: </strong>We conducted literature searches using PubMed, PsycINFO, SCOPUS, Web of Science, and Cochrane. After reviewing 764 articles, 62 studies met eligibility criteria. Pearson's r correlations were the effect size of interest. We conducted both omnibus and domain-specific (e.g., family conflict, cohesion) meta-analyses. Meta-regressions examined whether relevant covariates related to the magnitude of the effect.</p>

<p><strong>Results: </strong>The omnibus meta-analysis showed that family functioning was significantly related to medical adherence across a variety of pediatric chronic health conditions. Lower family conflict, greater family cohesion, greater family flexibility, more positive communication, and better family problem-solving were each associated with better adherence. There were no significant differences in the magnitude of the omnibus effect based on child age, measurement features (subjective vs. objective or bioassay adherence; family unit vs. parent-child interactions), or study quality.</p>

<p><strong>Conclusions: </strong>Consistent with social-ecological frameworks, findings supported links between family functioning and medical adherence. This study highlights several limitations of the extant research, including absence of a guiding theoretical framework and several methodological weaknesses. We offer clinical and research recommendations for enhancing scientific understanding and promotion of adherence within the family context.</p>

DOI

10.1093/jpepsy/jsy044

Alternate Title

J Pediatr Psychol

PMID

29982694

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