The contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in pediatric inflammatory bowel disease.

BACKGROUND: Clinical disease activity associated with inflammatory bowel disease (IBD) can place physical limitations on youths' activities of daily living. In turn, functional limitations potentially contribute to youths' heightened experience of IBD-induced intrusions on a wide range of routine and valued activities (i.e., illness intrusiveness), which can increase their risk for depressive symptoms. The present study examined the contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in youth with IBD. METHODS: Youth (N = 180) completed the Functional Disability Inventory (FDI), Illness Intrusiveness Scale-Child (IIS-C), and Children's Depression Inventory-2 (CDI-2). Physicians completed the Physicians Global Assessment of disease activity (PGA). RESULTS: Results revealed a mediating effect for functional disability in the association between disease activity and depressive symptoms (PGA → FDI → CDI-2); illness intrusiveness mediated the association between functional disability and depressive symptoms (i.e., FDI → IIS-C → CDI-2). Serial mediation revealed that clinical disease activity conferred an indirect effect on youth depressive symptoms through the sequential effects of functional disability and illness intrusiveness (i.e., PGA → FDI → IIS-C → CDI-2). CONCLUSIONS: Taken together, these findings indicate that youth who encounter more physical limitations as a function of clinical disease activity are more likely to experience an amplified sense of IBD-related intrusions on their ability to participate in meaningful activities. In turn, heightened illness intrusiveness increases the likelihood of depressive symptoms. Clinical interventions that help youth maintain adequate functional ability in the face of IBD disease activity and encourage involvement in positively valued activities could decrease the negative impact of IBD on youths' emotional adjustment.

Use of Behavior Change Techniques and Quality of Commercially Available Inflammatory Bowel Disease Apps.

BACKGROUND: Inclusion of evidence-based behavior change techniques (e.g., self-monitoring) in mobile health apps has the potential to promote adherence to inflammatory bowel disease treatment. While inflammatory bowel disease management apps exist, the extent to which they incorporate behavior change techniques remains unknown. AIMS: The present study systematically evaluated the content and quality of free, commercially available inflammatory bowel disease management apps. METHODS: Apps were identified using a systematic search of the Apple App and Google Play stores. Apps were evaluated using Abraham and Michie's taxonomy of 26 behavior change techniques. A literature search was conducted to identify behavior change techniques specific and relevant for people with inflammatory bowel disease. App quality was assessed using the Mobile App Rating Scale with scores ranging from 1 (Inadequate) to 5 (Excellent). RESULTS: A total of 51 inflammatory bowel disease management apps were evaluated. Apps included 0-16 behavior change techniques (Mean = 4.55) and 0-10 inflammatory bowel disease management behavior change techniques (Mean = 3.43). App quality ranged from 2.03 to 4.62 (Mean = 3.39) out of 5.00. Two apps, My IBD Care: Crohn's & Colitis and MyGiHealth GI Symptom Tracker, included the highest number of overall and inflammatory bowel disease management behavior change techniques along with high-quality scores. Bezzy IBD was the only app with a high number of overall and inflammatory bowel disease management behavior change techniques with a primary focus on social support/change. CONCLUSION: Most inflammatory bowel disease management apps reviewed included evidence-based inflammatory bowel disease management behavior change techniques.

Sleep mHealth Applications and Behavior Change Techniques Evaluation.

OBJECTIVES: Mobile health apps may be an effective way to increase sleep management skills. Although little has been documented about the content and quality of available sleep management apps, providers often make app recommendations to help with sleep self-management. The objective of this study was to systematically evaluate the content and quality of commercially available sleep apps. METHODS: Following a systematic search of the Apple App and Google Play stores, 56 sleep management apps were evaluated. App content was evaluated using the taxonomy of behavior change techniques (BCTs), and app quality was assessed using the Mobile App Rating Scale. RESULTS: Sleep management apps included 0-15 BCTs (M = 6.89) and 0-9 sleep BCTs (M = 4.87). App quality ranged from 2.51 to 4.80 (M = 3.78) out of 5.00. Sleepiest Sleep Sounds Stories, ShutEye: Sleep Tracker, and Mintal Tracker: Sleep Recorder included the highest number of sleep BCTs and highest quality scores. CONCLUSIONS: While the content and quality of sleep management apps is variable, the findings are promising as many apps included a high number of BCTs and high quality. Although evidence of efficacy through randomized controlled trials is necessary to establish efficacy, this review can aid in app selection in the interim.

The Combined Effects of Youth and Parent Illness Intrusiveness on Depressive Symptoms in Adolescents with Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) presents physical and emotional challenges for families and imposes significant lifestyle intrusions on both youth and parents. The present study examined the effects of IBD disease activity and youth illness intrusiveness on depressive symptoms in adolescents, and the moderating influence of parent illness intrusiveness on these associations. Adolescents and parents completed measures of illness intrusiveness; youth completed a measure of depressive symptoms. Physicians provided estimates of IBD disease activity. Mediation analysis revealed an IBD disease activity → youth intrusiveness → youth depressive symptoms indirect effect. Moderated mediation analyses revealed this indirect effect to be greater among youth whose parents endorsed more IBD-related intrusions. Youth encountering greater activity disruptions related to IBD are vulnerable to depressive symptoms. When parents also experience IBD-induced intrusions, youth are at even greater risk for depressive symptoms. Clinical implications are discussed within the context of youths' and parents' experiences of IBD.

Factor analysis of the stigma scale-child in pediatric inflammatory bowel disease.

OBJECTIVE: Illness stigma, or perceived stigma related to a chronic health condition, is pervasive among youth with inflammatory bowel disease (IBD). However, no studies exist examining the psychometric properties of illness stigma measures in this population. Using a modified version of the Child Stigma Scale originally developed for youth with epilepsy, the current study investigated the factor structure and validity of this adapted measure (i.e., Stigma Scale - Child; SS-C) in youth with IBD. METHODS: Factor analyses were conducted to determine the most parsimonious factor structure for the adapted 8-item Stigma Scale - Child in a sample of 180 youth with IBD. Correlations were conducted to assess convergent validity, and a multiple regression was conducted to further evaluate the measure's predictive validity of child depressive symptoms. RESULTS: The most parsimonious model for the SS-C is a one-factor solution with an error covariance between the two items assessing concealment/disclosure of IBD diagnosis. CONCLUSIONS: The SS-C is a psychometrically sound illness stigma measure in pediatric IBD that demonstrates strong convergent validity with psychosocial adjustment factors such as thwarted belongingness, illness uncertainty, and illness intrusiveness, as well as strong predictive validity with youth depressive symptoms. The SS-C is a viable option for use as a brief screener in youth with IBD across clinical and research settings.

Quality of Life in Adolescents and Young Adults With a Chronic Medical Condition: The Role of Perceived Maturity and Transition Readiness.

INTRODUCTION: Adolescents and young adults (AYA) with a chronic medical condition (CMC) attending college must learn to manage their own healthcare (i.e., transition readiness). Maturity has been linked to positive outcomes in AYAs. Research has established a positive relationship between transition readiness and quality of life. The current study aimed to examine a model of perceived maturityàtransition readinessàmental and physical quality of life. METHOD: AYA (N = 153) with a CMC completed self-report questionnaires. RESULTS: The perceived maturity→transition readiness→mental quality of life indirect path was significant (ab = 1.96, 95% CI = 0.53 to 3.62). The perceived maturity→transition readiness→physical quality of life direct and indirect paths were not significant. DISCUSSION: Results showed that maturity and transition readiness are positively associated. Transition readiness may be one mechanism by which maturity results in enhanced quality of life. PRACTICE IMPLICATIONS: Findings highlight the value of enhancing strengths such as maturity to promote AYA independence/autonomy.

Illness stigma, body image dissatisfaction, thwarted belongingness and depressive symptoms in youth with inflammatory bowel disease.

BACKGROUND: Elevated depressive symptoms are observed in a significant number of youth with inflammatory bowel disease (IBD) and have been linked to illness stigma and social isolation. Body image dissatisfaction is an understudied variable in the pediatric IBD literature that may be related to both stigma and social difficulties. It is suspected that, due to the stigmatizing nature of IBD, some youth may feel self-conscious about their body image, which contributes to decreased feelings of social belongingness and ultimately depressive symptoms. The current study tested an illness stigma→ body image dissatisfaction→ thwarted belongingness→ depressive symptoms serial mediation model, in which IBD stigma was hypothesized to indirectly influence youth depressive symptoms through the sequential effects of stigma on body image dissatisfaction and thwarted social belongingness. METHODS: Youth with IBD (N = 75) between 10 and 18 years old were recruited from a pediatric gastroenterology clinic and completed psychosocial measures. Disease severity was assessed by a physician global assessment. Current medications and BMI data were collected. RESULTS: Analyses revealed significant direct effects among the modeled variables and a significant serial indirect path for illness stigma→ body image dissatisfaction→ thwarted belongingness→ depressive symptoms, controlling for sex, BMI and prednisone medication. CONCLUSIONS: Youth who perceive greater IBD stigma are more likely to experience increased body image dissatisfaction due to their IBD, which may engender feelings of social estrangement and ultimately elevated depressive symptoms. Depressive symptoms and the psychosocial challenges faced by youth should be routinely monitored as part of comprehensive IBD management.

Stigma, Intrusiveness, and Distress in Parents of Children with a Disorder/Difference of Sex Development.

OBJECTIVE: The impact of parent-reported stigma due to their child's disorder/difference of sex development (DSD) on parent psychosocial adjustment is poorly understood. In other pediatric populations, perceived interference of medical conditions into daily activities (i.e., illness intrusiveness ) mediates the relationship of stigma to adjustment. This study assessed relationships between parent-focused and child-focused stigma → illness intrusiveness → depressive and anxious symptoms . Exploratory analyses sought to identify patient characteristics associated with stigma. METHOD: Caregivers (59 women and 43 men) of 63 children diagnosed with a DSD up to age 4 years completed measures of demographics, parent-focused and child-focused stigma, illness intrusiveness, and depressive and anxious symptoms. RESULTS: Increased parent-focused and child-focused stigma were associated with increased illness intrusiveness, which, in turn, was associated with increased depressive and anxious symptoms for parents nested within dyads. Among children with DSD family histories, parents reported greater child-focused stigma. CONCLUSION: Parents who experience DSD-related stigma report greater interference of their child's DSD into their daily activities, which is associated with poorer psychosocial adjustment. Findings support developing clinical interventions related to parents' perceptions of stigma and illness intrusiveness to improve parent adjustment.

Aspects of Cognitive Impairment Associated with Agitated Behaviour during Post-traumatic Amnesia.

OBJECTIVES: Post-traumatic amnesia (PTA) is a transient period of recovery following traumatic brain injury (TBI) characterised by disorientation, amnesia, and cognitive disturbance. Agitation is common during PTA and presents as a barrier to patient outcome. A relationship between cognitive impairment and agitation has been observed. This prospective study aimed to examine the different aspects of cognition associated with agitation. METHODS: The sample comprised 82 participants (75.61% male) admitted to an inpatient rehabilitation hospital in PTA. All patients had sustained moderate to extremely severe brain injury as assessed using the Westmead Post-Traumatic Amnesia Scale (WPTAS) (mean duration = 42.30 days, SD = 35.10). Participants were assessed daily using the Agitated Behaviour Scale and WPTAS as part of routine clinical practice during PTA. The Confusion Assessment Protocol was administered two to three times per week until passed criterion was achieved (mean number assessments = 3.13, SD = 3.76). Multilevel mixed modelling was used to investigate the association between aspects of cognition and agitation using performance on items of mental control, orientation, memory free recall, memory recognition, vigilance, and auditory comprehension. RESULTS: Findings showed that improvement in orientation was significantly associated with lower agitation levels. A nonsignificant trend was observed between improved recognition memory and lower agitation. CONCLUSIONS: Current findings suggest that the presence of disorientation in PTA may interfere with a patient's ability to understand and engage with the environment, which in turn results in agitated behaviours. Interventions aimed at maximizing orientation may serve to minimize agitation during PTA.

Does cognitive decline occur decades after moderate to severe traumatic brain injury? A prospective controlled study.

This prospective controlled study examined long-term trajectories of neuropsychological performance in individuals with traumatic brain injury (TBI) compared to healthy controls, and the impact of IQ, age at injury, time since injury, and injury severity on change over time. Fifty-three individuals with moderate to severe TBI (60.37% male; M = 59.77 yrs, SD = 14.03), and 26 controls (46.15% male; M = 63.96 yrs, SD = 14.42) were studied prospectively (M = 12.72 yrs between assessments). Participants completed measures of premorbid IQ (Weschler Test of Adult Reading), processing speed (Digit Symbol Coding Test), working memory (Digit Span Backwards), memory (Rey Auditory Verbal Learning Test) and executive function (Trail Making Test Part B; Hayling Errors), at a mean of 10.62 yrs (Initial) and 23.91 yrs (Follow-Up) post injury. Individuals with TBI did not show a significantly greater decline in neuropsychological performance over time compared with demographically similar controls. There was no association between change over time with IQ, time since injury or injury severity. Being older at injury had a greater adverse impact on executive function at follow-up. In this small sample, a single moderate to severe TBI was not associated with ongoing cognitive decline up to three decades post injury. Changes in cognitive function were similar between the groups and likely reflect healthy aging.

The impact of illness intrusiveness and overparenting on depressive symptoms in parents of youth with inflammatory bowel disease.

PURPOSE: Inflammatory bowel disease (IBD) management creates significant caregiver demands that can interfere with parents' ability to engage in a number of role functions (i.e., illness intrusiveness) well into their child's adolescence, potentially resulting in excessive or misdirected parenting (i.e., overparenting). Disruptions and limited access to routine and valued activities (e.g., family, work, and leisure) due to IBD and excessive parenting may result in parents neglecting their own personal and emotional self-care needs, increasing their risk for depressive symptoms. To explore these associations, the present study examined parents' experience of illness intrusiveness and subsequent overparenting as serial mediators in the association between disease severity and parent depressive symptoms. DESIGN AND METHODS: Participants were 146 caregivers of adolescents with IBD from an outpatient pediatric gastroenterology clinic. During a scheduled outpatient visit, parents completed measures of illness intrusiveness, overparenting, and depressive symptoms. Pediatric gastroenterologists provided ratings of disease severity. RESULTS: Several direct and indirect associations were observed among the modeled variables. Notably, mediation analysis revealed a significant disease severity → illness intrusiveness → overparenting → depressive symptoms serial indirect effect. CONCLUSIONS: Parents' experience of greater IBD-induced lifestyle disruptions is associated with increased overparenting and a heightened risk for depressive symptoms. PRACTICE IMPLICATIONS: Parents should be encouraged to establish and maintain a healthy balance between parenting and self-care/role function activities, especially during adolescence when greater youth autonomy and independence are crucial. These types of clinical efforts may reduce the likelihood of parents experiencing depressive symptoms, and have the added benefit of improving adolescent IBD self-management.

The Role of Avoidance Coping and Illness Uncertainty in the Relationship Between Transition Readiness and Health Anxiety.

PURPOSE: The transition to college is associated with numerous stressors, including environmental changes, increased academic expectations, and changes in social support, all of which may be exacerbated by the added responsibility of managing a chronic medical condition. Huang (2019) proposed a model examining the relationships between coping styles, transition readiness, and health anxiety, and suggested that greater transition readiness is associated with adaptive coping strategies and less health anxiety. However, there are limited findings as to how poor transition readiness relates to health anxiety. Therefore, the current study tested a serial mediation model (i.e., poor transition readiness → avoidance coping → illness uncertainty → health anxiety). DESIGN AND METHODS: College students (N = 194) with a chronic medical condition completed self-report questionnaires. RESULTS: Results indicated several direct effects among the modeled variables and a significant poor transition readiness → avoidance coping → illness uncertainty → health anxiety serial mediation (path a1d21b2 = 0.438, 95% CI = 0.153 to 0.913). CONCLUSIONS: Worse transition readiness was associated with increased avoidance as a coping mechanism, which in turn is associated with increased illness uncertainty, and ultimately health anxiety. The current findings identified possible drivers of health anxiety in college students with a chronic medical condition. PRACTICE IMPLICATIONS: These findings highlight that good transition readiness skills may buffer against maladaptive avoidance, illness uncertainty, and health anxiety. Modules aimed at improving healthcare management, avoidance, and illness uncertainty may be beneficial additions to interventions to reduce health anxiety.

Stigma Moderates the Relation Between Peer Victimization, Thwarted Belongingness, and Depressive Symptoms in Youth with Inflammatory Bowel Disease.

PURPOSE: The stigmatizing nature of IBD symptoms may place youth at risk for being targets of peer victimization, potentially resulting in a decreased sense of social belongingness and poorer emotional adjustment. The present study tested a series of mediation and moderated mediation models examining the associations among peer victimization, thwarted social belongingness, and depressive symptoms, as well as the moderating role of IBD stigma in these associations. We hypothesized peer victimization would have an indirect effect on youth depressive symptoms through thwarted belongingness, and this effect would be amplified for youth endorsing greater IBD stigma. DESIGN AND METHODS: Seventy-five youth (10-18 yrs.) diagnosed with IBD were recruited from a pediatric gastroenterology clinic. Participants completed self-report measures of IBD stigma, peer victimization, thwarted belongingness, and depressive symptoms. RESULTS: As anticipated, mediation analyses revealed a significant peer victimization → thwarted belongingness → depressive symptoms indirect path. Moderated mediation analyses indicated that this indirect effect was moderated by IBD stigma and was significantly greater among youth reporting higher IBD stigma. CONCLUSIONS: Youth who experience higher levels of IBD-related stigma are at increased risk for depressive symptoms as a function of the socially isolating effects of peer victimization. PRACTICE IMPLICATIONS: Our findings highlight the need for routine screening and identification of the socioemotional challenges faced by youth with IBD. Clinical interventions that incorporate coping strategies aimed at minimizing youths' stigmatizing self-perceptions and improving overall social skills and social engagement may lessen the negative impact of peer victimization on youths' social and emotional adjustment.

Illness Stigma, Worry, Intrusiveness, and Depressive Symptoms in Youth With Inflammatory Bowel Disease.

BACKGROUND: Youth who experience IBD-associated stigma may manifest increased worry about aversive symptoms that can intrude on their participation in routine activities (eg, school, social events), potentially resulting in limited opportunities for reinforcement and increased depressive symptoms. The present study examined an IBD stigma → IBD worry → illness intrusiveness → depressive symptoms serial mediation model, in which stigma was hypothesized to confer an indirect effect on youth depressive symptoms through the serial effects of stigma on IBD worry and illness intrusiveness. METHODS: Youth with IBD (N = 90) between the ages of 10 and 18 years were recruited from a pediatric gastroenterology clinic and completed measures of IBD stigma, IBD worry, illness intrusiveness, and depressive symptoms. RESULTS: In addition to several independent direct effects among the modeled variables, results revealed a significant IBD stigma → IBD worry → illness intrusiveness → depressive symptoms serial mediation path (effect = 0.63, 95% CI = 0.22 to 1.20), controlling for youth sex and IBD severity. CONCLUSIONS: The experience of IBD-related stigma may prompt increased worry about IBD symptoms, independent of the influence of disease activity. Further, heightened worry appears to amplify youths' experience of IBD-imposed limitations on routine and rewarding activities, increasing their risk for experiencing depressive symptoms. Our findings highlight the importance of regular screening for depressive symptoms, as well as the identification of potential risk factors associated with emotional adjustment difficulties. Stigma-specific treatment modules could be integrated within existing cognitive-behavioral approaches for reducing worry and depressive symptoms in youth with IBD.

Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis.

OBJECTIVE: To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). METHODS: Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. RESULTS: Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. CONCLUSIONS: The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.

Stigma by Association: Parent Stigma and Youth Adjustment in Inflammatory Bowel Disease.

OBJECTIVE: Examine the indirect association between parents' experience of stigma (i.e., associative stigma) and youth depressive symptoms through the serial effects of associative stigma on parent and youth illness intrusiveness in pediatric inflammatory bowel disease (IBD). METHODS: During routine clinic visits, 150 youth with well-controlled IBD (ages 10-18 years) completed measures of perceived illness intrusiveness and depressive symptoms. Parents completed measures of associative stigma and illness intrusiveness. Pediatric gastroenterologists provided ratings of IBD disease severity. RESULTS: Structural equation modeling revealed significant direct associations for associative stigma → parent illness intrusiveness, parent illness intrusiveness → youth illness intrusiveness, and youth illness intrusiveness → youth depressive symptoms. Results also revealed a significant associative stigma → parent illness intrusiveness → youth illness intrusiveness→ youth depressive symptoms serial mediation path, indicating that parents' experience of associative stigma indirectly influenced youth depressive symptoms through its sequential effects on parent and youth perceived illness intrusiveness. CONCLUSIONS: Parents who face stigma related to their child's IBD (i.e., associative stigma) are more likely to experience IBD-induced lifestyle intrusions (i.e., illness intrusiveness), which in turn is associated with youths' illness intrusiveness and ultimately youth depressive symptoms. These findings provide further evidence for the important role of illness-related stigma in pediatric IBD, particularly the transactional relation between parents' associative stigma and youths' illness appraisals and emotional functioning. The clinical implications of our results for addressing adjustment difficulties in youth with IBD are also discussed.

Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD.

OBJECTIVE: A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry. METHODS: One hundred and thirteen caregivers (Mage = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N = 70; Mage = 9.81 months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child. RESULTS: Caregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05). CONCLUSIONS: Caregivers' perceptions of uncertainty about their child's DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target.