Examining the psychometric properties of the CEFIS-AYA using item response theory.

OBJECTIVE: The COVID-19 Exposure and Family Impact Scale, Adolescent and Young Adult Version (CEFIS-AYA; Schwartz, L. A., Lewis, A. M., Alderfer, M. A., Vega, G., Barakat, L. P., King-Dowling, S., Psihogios, A. M., Canter, K. S., Crosby, L., Arasteh, K., Enlow, P., Hildenbrand, A. K., Kassam-Adams, N., Pai, A., Phan, T. L., Price, J., Schultz, C. L., Sood, E., Wood, J., & Kazak, A. (2022). COVID-19 exposure and family impact scales for adolescents and young adults. Journal of Pediatric Psychology, 47, 631-640. https://doi.org/10.1093/jpepsy/jsac036) was developed to assess the pandemic's effects on adolescents and young adults (AYA). Via principal component analysis, measure developers examined the structure and reliability of the CEFIS-AYA and identified seven exposure and five impact components. This study built upon prior work through use of item response theory (IRT) models to characterize the dimensionality of the CEFIS-AYA, determine the strength of relations between items and underlying trait(s), and examine associations between trait scores and pandemic-related distress. METHODS: This was a secondary analysis of data collected between July 2020 and July 2021 from three studies of emerging adults (ages 18-29; N = 834). RESULTS: The CEFIS-AYA structure was multidimensional, with the strongest support for five traits. Trait 1 represented pandemic impact on social/emotional functioning and self-care. Trait 2 reflected other pandemic disruptions. Trait 3 represented pandemic disruptions to education and/or other milestones. Trait 4 represented pandemic impact on physical well-being. Trait 5 assessed pandemic disruptions to work/financial circumstances. Item loadings and parameters indicated variability in how consistently trait level was associated with item endorsement. Trait scores did not predict distress, except that increases in Trait 3 were associated with lower distress. CONCLUSIONS: The present study examined the psychometric properties of the CEFIS-AYA among emerging adults using a statistical framework better suited for modeling categorical data. The identified dimensional structure was relatively consistent with the initial psychometric evaluation of the CEFIS-AYA, albeit more parsimonious. However, replication is critical in light of sample demographic characteristics.

Perceived Stigma in Patients with Autoimmune Hepatitis.

Perceived stigma (PS) adversely impacts psychosocial and disease outcomes in patients with chronic liver diseases (CLD), and those with autoimmune hepatitis (AIH) may be at risk for PS given inaccurate assumptions about the origin of their diagnosis. The aims of the current study are to describe the frequency of PS in patients with AIH, compare rates of PS in AIH to rates of PS in primary biliary cholangitis (PBC) and CLD, and examine demographic correlates of PS. 262 adults with AIH (95% female, Mage = 51.53 years) completed online questionnaires on demographics, disease information, and PS. 54-68% reported PS with themes of selective disclosure, non-disclosure, or hiding diagnosis. PS was higher in those with AIH compared to those with PBC, but lower than those with various CLD. Age was inversely related to PS. Given the results, provider screening of PS and integration of clinical health psychologists may be helpful for identifying PS in patients with AIH.

Vaccine Attitudes Mediate Relationships Between Caregiver Political Ideology and Likelihood of Child Vaccination for COVID-19.

INTRODUCTION: The COVID-19 vaccine has become available to children ages 5-12, yet vaccine uptake is suboptimal. Political ideology is a correlate of COVID-related beliefs and vaccine likelihood among US adults. However, since political ideology is not easily modifiable, attention to modifiable mechanisms that may explain links between political ideology and vaccine hesitancy is important in addressing this public health crisis. Caregiver attitudes around vaccine safety and efficacy have been related to vaccine uptake in other populations and warrant additional study in the context of COVID-19. The current study examined whether caregiver's attitudes regarding the safety and efficacy of the COVID-19 vaccine mediated the relationship between caregiver political ideology and likelihood of having their child vaccinated. METHODS: 144 US caregivers of children (6-12 years) completed an online survey in summer 2021 to assess political ideology, vaccine-related beliefs, and likelihood of having their child vaccinated against COVID-19. RESULTS: Caregivers with more liberal political views reported higher likelihood of eventual child vaccination compared to caregivers who reported a more conservative views (t(81) = 6.08, BCa CI [2.97, 5.67]). Moreover, parallel mediation models indicated caregiver?s perceptions of risks (BCa CI [-.98, -.10]) and efficacy (BCa CI [-3.16, -2.15]) of the vaccine each mediated the aforementioned relationship, with perceived efficacy explaining significantly more variance than risks. CONCLUSIONS: Findings extend knowledge by identifying social cognitive factors that impact caregiver vaccine hesitancy. Interventions to address caregiver's hesitancy to have their child vaccinated through modifying caregiver's inaccurate beliefs regarding vaccines or enhancing perceptions of vaccine efficacy is warranted.

Do Patient Personality Traits and Self-Reported Physical and Psychosocial Symptoms Help to Predict Hallux Valgus Surgery Outcomes?

As many as 10% of patients remain unsatisfied after hallux valgus surgery. We explored the effects of patient personality traits and other preoperative patient characteristics on patient-reported outcomes following surgery. Eighty consecutive adult patients (mean age 45 ± 14 years, 91% female [73/80]) undergoing scarf bunionectomy at our practice were prospectively enrolled from January 2016 to January 2017 and followed for 12 months. Predictor variables included preoperative physical and psychosocial complaints (determined via Brief Battery for Health Improvement-2 questionnaire), patient aggression level, and personality traits (extraversion, agreeableness, conscientiousness, emotional stability and openness). Primary outcome measures included the Foot and Ankle Outcome Score (FAOS) with its 5 subscales, and patient satisfaction. Multiple multivariable regression models were used to determine preoperative patient characteristics associated with FAOS outcome and satisfaction at 12 months. Seventy subjects (70/80, 87.5%) completed the study. All patients experienced technically successful surgery. In the multivariable regression analyses, none of the combinations of potentially important predictor variables explained more than 19.8% of the variance in any of the 5 FAOS subscales at 12 months (range: 6.1%-19.8%). Furthermore, no predictor was associated with patient satisfaction in either the univariate or multivariable analyses. We conclude that patient personality traits, aggression level, and self-reported physical and psychological symptoms do very little to predict outcomes in hallux valgus surgery. As healthcare delivery in the United States has increasingly prioritized patient satisfaction, we will need to broaden the quest for predictors associated with our best (and worst) patient-reported outcomes after hallux valgus surgery.

Emerging Adults' Adherence to Preventative Health Guidelines in Response to COVID-19.

OBJECTIVE: To examine rates of emerging adults' (EA) adherence to preventative health behavior recommendations during early months of the COVID-19 pandemic and to investigate demographic (i.e., gender, years of education, socioeconomic status, school enrollment status, and living situation) and exposure and impact-related correlates of adherence. METHODS: Participants were 273 [M (SD) age = 22 (2.1) years, 55% female, 32% from minoritized groups] EA completed an online survey of adherence to 11 preventative health behaviors recommended by the Centers for Disease Control (CDC) during summer 2020. Participants rated adherence via a visual analog scale. Participants also reported demographic information and completed the COVID-19 Exposure and Family Impact Adolescent and Young Adult Version (CEFIS-AYA). RESULTS: Median levels of adherence to preventative recommendations ranged from 66% to 100%. Highest adherence levels (Mdn > 90%) were reported for quarantining if exposed to COVID-19; covering mouth when sneezing; avoiding the elderly/those at high risk; and avoiding large gatherings. Median adherence was <80% for mask wearing; maintaining a 6-foot distance; avoiding in-person visits with romantic partners or friends; and disinfecting surfaces. Female gender was the only variable significantly associated with overall adherence, and it explained 4% of the variance. CONCLUSIONS: Following guidelines related to social distancing practices may be particularly challenging for EA, possibly because of unique developmental needs of this group, and males may be at greater risk for non-adherence to CDC recommendations. Therefore, public health messaging and adherence intervention development should be designed with males and social distancing practices in mind.

Communication About Medication by Providers-Adolescent and Young Adult Version: Confirmatory Factor Analyses.

OBJECTIVE: To replicate the factor structure of a patient-report measure of provider communication about key medication prescription information, the Communication about Medication by Providers-Adolescent and Young Adult (CAMP-AYA) Version. We evaluated whether the 15-item, two-factor structure identified previously could be replicated via confirmatory factor analysis, and we also examined fit of unidimensional and bifactor models. Associations of CAMP-AYA Total and Factor Scores with provider satisfaction and select patient and medication characteristics were also examined. METHODS: Participants were 739 AYA (ages 18-25) who completed the CAMP-AYA, a provider satisfaction rating, and provided demographic and medication information. RESULTS: The bifactor model was best fitting (χ2 [75] = 689.60, p < .0001; root mean squared error of approximation = 0.11, 90% CI [0.10, 0.11]; Comparative Fit Index = 0.98; Tucker-Lewis Index = 0.98; Standardized Root Mean Square Residual Index = 0.02). Internal consistency reliabilities for Total and Factor Scores were high (αs > .89) and Total and Factor Scores were associated with provider satisfaction (ps < .001). CAMP-AYA scores varied as a function of type of prescription (short vs. long term; new vs. refill), with higher scores reported in the context of long term (>30-day course) or refilled prescriptions (ps < .007) in most cases. CONCLUSIONS: This study provides additional support for the reliability of the CAMP-AYA as a tool to assess AYA perceptions of provider key information coverage about medication prescriptions.

Family Support is Associated with Fewer Adherence Barriers and Greater Intent to Adhere to Oral Medications in Pediatric IBD.

PURPOSE: Medication nonadherence is common among adolescents, and family support can enhance adherence. In a sample of youth with inflammatory bowel disease (IBD), we aimed to describe barriers to oral medication adherence and intent to adhere. Additionally, we examined the role of family support in influencing adherence barriers and intent to adhere, and assessed if age moderated these relationships. DESIGNS AND METHODS: A secondary analysis of baseline data from an adherence-promotion intervention trial was conducted. Youth reported perceptions of family support, adherence barriers, and intent to adhere via validated measures. RESULTS: Among youth (N = 76, ages 11-18), age moderated the impact of family support on total adherence barriers, disease/regimen barriers, social support/self-efficacy barriers, and intent to adhere. At higher levels of family support, younger (Mage = 12.93 years) and mid-age (Mage = 14.68 years) youth reported fewer barriers to adherence and greater intent to adhere. No main effect of family support or evidence of age moderation was found for denial/distrust or peer influences barrier domains. CONCLUSIONS: Younger and mid-aged adolescents benefitted from family support in the context of IBD management. Future research should examine whether interventions to enhance family support may enhance youth adherence. PRACTICAL IMPLICATIONS: Given prior findings highlighting the success of nurse-led interventions in promoting adherence in patients with IBD, present findings suggest additional intervention points for nurses working with pediatric IBD populations.

Influence of Provider Communication on Emerging Adults' Medication Cognitions and Provider Satisfaction.

OBJECTIVE: This study examined how the content of medical provider communication related to medication prescriptions influenced emerging adults' (EA) medication-related cognitions and satisfaction with care. METHODS: In total, 257 EA (ages 18-25) were randomized to one of three audio vignettes depicting a medical appointment in which the EA imagined him/herself as the recipient of an oral antibiotic prescription. Provider communication content varied by vignette as follows: the positive outcome expectancy (POE) vignette focused on enhancing patient POE related to antibiotic use; the negative outcome expectancy (NOE) vignette focused on reducing patient NOE; and the standard care vignette focused on providing factual medication information. Following the vignette, participants self-reported on demographics, select medication-related cognitions, and provider satisfaction from vignette. RESULTS: Those in the NOE vignette condition reported higher provider satisfaction, perceived the provider to have given more information, and evidenced lower NOE and higher POE about the antibiotic compared with those in the other conditions. Intent to adhere did not vary by vignette condition. CONCLUSIONS: Brief, provider-initiated communication focused on reducing patient NOE may have unique value in altering EA's medication-related cognitions. Given that medication-related beliefs are known correlates of adherence, future research should replicate and expand these findings in the context of real-world medical encounters and through the utilization of objective indices of medication adherence to more fully understand the potential significance of provider language emphasizing reduction of NOE on medication adherence.

Substance Use in Adolescents and Young Adults With Inflammatory Bowel Diseases: An Exploratory Cluster Analysis.

OBJECTIVES: Adolescents and young adults (AYAs) with chronic illnesses use substances at similar, if not greater, rates compared to healthy peers. The present study aimed to examine rates and patterns of tobacco use, marijuana use, and binge drinking in AYAs with inflammatory bowel diseases. We expected that substance use would be associated with poorer physical health, psychosocial functioning, and disease management. METHODS: One hundred thirty-two AYAs completed a single set of surveys assessing demographics, disease activity, healthcare utilization, health-related quality of life (HRQoL), inflammatory bowel disease-specific self-efficacy, adherence barriers, disease management skills, and substance use in the last 30 days (eg, tobacco use, marijuana use, binge drinking). Exploratory cluster analyses, followed by chi-square tests and analyses of variance examined patterns of substance use and correlates of cluster membership. RESULTS: Four patterns emerged from the sample: Global Users (n = 17), Marijuana Users Engaging in Binge Drinking (n = 18), Exclusive Binge Drinkers (n = 21), and Global Abstainers (n = 76). Groups differed by age, gender, disease activity, healthcare utilization, HRQoL, self-efficacy, and adherence barriers with medium and large effect sizes (P < .05). CONCLUSIONS: Older age, male gender, active disease, at least 1 hospitalization in the past year, low self-efficacy, low HRQoL, and high adherence barriers were significantly more likely for those reporting multisubstance use. In addition, all those reporting both marijuana use and binge drinking also reported tobacco use. Future research ought to examine these associations longitudinally and throughout the transition to adult care.

Longitudinal Barriers to Thiopurine Adherence in Adolescents With Inflammatory Bowel Diseases.

Objectives: Cross-sectionally, more adherence barriers are associated with lower medication adherence. However, little is known about longitudinal associations between adherence barriers and adherence. Among adolescents with inflammatory bowel diseases (IBD), this study examined both (1) how time-varying self-reported adherence barriers affect daily thiopurine adherence and (2) how adherence barriers at baseline affect daily thiopurine adherence over a six-month period. Methods: Eighty-one adolescents 11-18 years old prescribed a once-daily oral IBD maintenance medication participated in a six-month observational study. Adherence barriers were self-reported monthly via the Medication Adherence Measure (MAM): Medication Subscale. Daily adherence estimates were collected via Medication Event Monitoring System (MEMS) Track Caps. Results: Generalized linear mixed modeling indicated that time alone did not significantly predict whether one was more likely to be adherent (p = .602). However, increasing adherence barriers lowered the likelihood that a participant would be adherent on a given day, and the interaction between time and barriers predicted likelihood of adherence on a given day (p < .01). Specifically, when participants reported no adherence barriers at baseline, adherence did not significantly change over time (p = .369). However, when barriers were endorsed, adherence decreased over time (p < .01). Conclusions: Fewer adherence barriers over time predicted greater likelihood of adherence on a given day, which is consistent with previous cross-sectional research. Routine assessment of barriers to adherence over the course of adolescence is critical in addressing suboptimal adherence behavior in youth with IBD.

Mother-Daughter Communication about Sexual Behavior and Reproductive Health in Females with Chronic Health Conditions.

PURPOSE: Females with chronic health conditions (CHCs) engage in risky sexual behavior at least as frequently as their healthy counterparts. Among healthy youth, mother-daughter communication about sexual behavior and reproductive health protects against risky sexual behavior. Yet, little is known about the nature of this type of communication in female adolescents with CHCs or factors that contribute to communication. This study described mother-daughter communication frequency, timing, and comfort and examined the role of demographic/disease factors and maternal outcome expectancy (OE), in contributing variance to mother-daughter communication about risky sexual behavior and reproductive health. DESIGN AND METHODS: One hundred mother-daughter dyads from outpatient clinics located within a hospital participated. Daughters [ages 14-19; M(SD) age = 16.28 (1.53)] provided demographic information and mothers self-reported frequency, timing, comfort, and OE of mother-daughter communication about sexual behavior and reproductive health. RESULTS: Reproductive health topics were discussed with the greatest frequency. Condom and birth control use were discussed less often. Overall, maternal comfort levels were high across topics. Maternal positive OE was associated with all communication domains, accounting for between 11 and 21% of the variance beyond relevant demographic factors. CONCLUSIONS: Fostering positive maternal OE may enhance multiple domains of mother-daughter communication about sexual behavior and reproductive health in samples of female adolescents with various CHCs. PRACTICE IMPLICATIONS: Since mothers with positive OE talk about sexual behavior earlier, more frequently, and with greater comfort; nurses are in a unique position to empower mother-daughter communication about sexual behavior and reproductive health and enhance mother OE during clinical encounters.

Perceived Impairment in Sports Participation in Adolescents With Inflammatory Bowel Diseases: A Preliminary Examination.

OBJECTIVE: Physical activity (PA) is important for adolescents with inflammatory bowel diseases (IBDs) given the increased risk of developing osteoporosis and the increased risk of IBD-related complications among those with IBD and obesity. Symptoms such as fatigue, abdominal pain, nausea, and frequent bowel movements can interfere with PA. Sports participation is an important source of PA for adolescents; however, the extent to which IBD interferes with sports participation is unstudied. The present study aimed to examine demographic, health-related, physical, and psychosocial correlates of perceived impairment in sports participation. METHOD: Seventy-six adolescents (M[SD] = 14.5 [1.8] years, 45% girls) completed surveys of perceived impairment in sports participation, demographics, physical health, and psychosocial health. Physicians rated disease activity at enrolment. All participants were diagnosed with IBD for at least a year and prescribed a daily oral medication. RESULTS: Nearly half of participants reported at least occasional interference in sports participation because of their IBD. Active disease (P = 0.014), older age (P = 0.006), and poorer disease-specific quality of life, and quality of life in physical health and psychosocial domains were associated with greater impairment in sports participation in bivariate analyses (P < 0.001). In regression analyses, systemic disease-related symptoms, body image concerns, and older age emerged as the strongest predictors of impairment in sports participation (P < 0.05). CONCLUSIONS: Older adolescents, those with greater systemic symptoms, and those with poorer body image may be particularly at risk for impairment in sports participation. Addressing barriers to sports participation may be a useful strategy in enhancing PA in this patient group.

Is There a Good App for That? Evaluating m-Health Apps for Strategies That Promote Pediatric Medication Adherence.

BACKGROUND: Mobile health medication reminder apps may be a useful supplement to traditional adherence-promotion interventions for pediatric chronic illness populations because they can give real-time reminders and provide education and promote behavior modification (components known to enhance adherence in traditional interventions) in an engaging and developmentally acceptable way. Moreover, apps have the potential to be used by youth and parents, an important consideration given that shared involvement in condition management is associated with better adherence. INTRODUCTION: This study evaluated the content and usability of existing medication reminder apps operating on the Apple platform. MATERIALS AND METHODS: Two researchers coded 101 apps on 15 desirable reminder, educational, and behavioral modification features. Usability testing was conducted with the subset of apps (n = 8) that had the greatest number of content features using a validated measure. RESULTS: Apps contained an average of 4.21 of 15 content features, with medication reminder features being more common than either educational or behavioral modification features. Apps most commonly included a medication name storage feature (95%), a time-based reminder feature (87%), and a medication dosage storage feature (68%). Of the eight apps that had the highest number of content features, Mango Health, myRX Planner, and MediSafe evidenced the highest usability ratings. No apps identified were specifically designed for pediatric use. DISCUSSION: Most apps lacked content known to be useful in traditional pediatric adherence-promotion interventions. Greater attention to educational and behavioral modification features may enhance the usefulness of medication reminder apps for pediatric groups. CONCLUSION: Collaborations between behavioral medicine providers and app developers may improve the quality of medication reminder apps for use in pediatric populations.

Adherence to Infliximab Treatment in a Pediatric Inflammatory Bowel Disease Cohort.

The aims of the study were to describe infliximab adherence in a pediatric inflammatory bowel disease cohort, to identify demographic and disease factors associated with adherence, and to examine differences in acute care use among adherent and nonadherent patients. Charts of patients who received infliximab at the Children's Hospital of Wisconsin (CHW) between October 2010 and October 2012 were retrospectively reviewed. A total of 151 patients met the inclusion criteria; 91.4% of the patients were adherent. Nonadherent patients had more emergency room visits and hospitalizations than adherent patients. The study is the first to show high adherence rates to infliximab in a pediatric cohort.

Correlates of health-related quality of life in pediatric inflammatory bowel disease: a cumulative risk model approach.

OBJECTIVE: To examine associations between disease-related, individual, and contextual risk factors and health-related quality of life (HRQoL) in a sample of youth with inflammatory bowel disease using a cumulative risk model framework. METHODS: Participants were 50 youth (58% male; M age = 15 years). Youth and parents completed measures of HRQoL, psychological functioning, and family functioning. Disease information was collected from medical record reviews. Medication adherence was electronically monitored via MEMS cap bottles. A cumulative risk index (CRI) was constructed based on disease activity, disease type, gender, anxiety/depression, medication adherence, general family functioning, disease-specific family functioning, and socioeconomic status. RESULTS: The CRI was associated with all youth- and mother-reported HRQoL domains. Furthermore, contextual domain factors were most consistently associated with youth and maternal reports of HRQoL. CONCLUSION: These results show promise in supporting the value of the CRI in identifying potential risk factors for lower HRQoL in a cross-sectional sample.

Meeting the challenges of the 21st century: the fundamental importance of trust for transformation.

BACKGROUND: This paper is one of a collection on challenges facing health systems in the future. One obvious challenge is how to transform to meet changing health needs and take advantage of emerging treatment opportunities. However, we argue that effective transformations are only possible if there is trust in the health system. MAIN BODY: We focus on three of the many relationships that require trust in health systems, trust by patients and the public, by health workers, and by politicians. Unfortunately, we are seeing a concerning loss of trust in these relationships and, for too long, the importance of trust to health policymaking and health system functioning has been overlooked and under-valued. We contend that trust must be given the attention, time, and resources it warrants as an indispensable element of any health system and, in this paper, we review why trust is so important in health systems, how trust has been thought about by scholars from different disciplines, what we know about its place in health systems, and how we can give it greater prominence in research and policy. CONCLUSION: Trust is essential if health systems are to meet the challenges of the 21st century but it is too often overlooked or, in some cases, undermined.

Placing Trust at the Heart of Health Policy and Systems.

Trusted interactions are crucial in health systems. Trust facilitates effective healthcare by encouraging patients to seek and adhere to treatment, enabling teamwork among health professionals, reducing miscommunication and medical errors, and fostering innovation and resilience. The COVID-19 pandemic underscored the importance of trust, highlighting the challenges in establishing and maintaining it, especially during crises when trust in authorities and health systems is vital for compliance and safety. However, trust is complex, varying with context and experiences, and is dynamic, easily lost but hard to regain. Despite its importance, trust is often overlooked in health policy and difficult to measure. Health systems and policy-makers must recognize the importance of trust, measure it effectively, understand how it is built or eroded, and act to maintain and restore it. This involves acknowledging the past experiences of marginalized groups, involving communities in decision-making, and ensuring transparency and integrity in health practices and policies.

Expanding eligibility and improving quality of cervical cancer screening in Estonia: The 2021 reforms.

Estonia has one of the highest death rates from cervical cancer in the European Union despite having had a population-based screening programme for over 15 years. In 2021, this high disease burden, alongside a new national cancer prevention plan, prompted a series of cervical cancer screening programme reforms to address low screening uptake and evidence of variable screening test quality. The reforms had three main elements: expansion of eligibility to all women aged 30-65 regardless of insurance status; increasing test provision by enabling family physicians to take screening samples and introducing self-sampling; and improving testing procedures, replacing cytology with HPV testing as the primary screening test. Although the impact of these changes is yet to be seen, early signs suggest increased programme participation. However, at 51 %, further action to address barriers to uptake will likely be necessary. If Estonia is to avoid another period of policy dormancy, as happened between 2006 and 2021, greater clarity on screening programme accountability is required. The establishment of the National Cancer Screening Group may enable this. The first test will be the delivery of an end-to-end evaluation of the reformed programme, with an emphasis on equity of access. The next step will be to develop and deliver solutions that respond to these needs.