Risk models for predicting the health-related quality of life of caregivers of youth with gastrointestinal concerns.

PURPOSE: To determine the usefulness of cumulative and additive risk models in predicting the healthy-related quality of life (HRQOL) of caregivers of youth with chronic gastrointestinal conditions. METHODS: 203 caregivers (82.8% mothers; 77.3% white) of youth (M = 11.27 years; 44.3% female; 78.8% White) completed self-report questionnaires focused on potential environmental, child health, and family risk factors that could impact caregiver HRQOL. Cumulative risk models, evaluating overall combined risk level, as well as an additive risk model, exploring individual risk variables, were evaluated. RESULTS: Higher levels of cumulative risk were associated with poorer caregiver HRQOL after controlling for child and caregiver sex. A linear cumulative risk model was a better fit than a quadratic cumulative risk model for predicting caregiver HRQOL, while an additive model identified child HRQOL, child pain interference and family functioning as the most individually impactful risk variables. CONCLUSION: This study illustrates the usefulness of both additive and cumulative risk approaches in identifying caregivers at risk for poor HRQOL. Provision of appropriate referrals and interventions based on the caregiver's risk factors can help protect caregiver quality of life and, in turn, benefit the care children with chronic conditions receive at home.

Quality of Life in Youth With Obstructive Sleep Apnea Syndrome (OSAS) Treated With Continuous Positive Airway Pressure (CPAP) Therapy.

OBJECTIVE/BACKGROUND: Improvement is sought for youth with obstructive sleep apnea syndrome (OSAS) who have poor quality of life (QoL), which resolves somewhat following treatment. One mitigating factor in improved QoL following treatment may be adherence to the CPAP protocol, which presents a barrier to most youth. This study explored relations between CPAP adherence and QoL in youth with OSAS. PARTICIPANTS: We recruited 42 youth-caregiver dyads in which youth between the ages of 8 and 16 years were diagnosed with OSAS and required CPAP use as part of their treatment plan. METHODS: Following diagnosis of OSAS requiring treatment with CPAP therapy, caregivers completed baseline measures of OSAS-specific QoL. The OSAS-specific QoL domains assessed included sleep disturbance, physical symptoms, emotional distress, daytime function, and caregiver concern. Families received routine CPAP care for three months, after which caregivers again completed measures of OSAS-specific QoL. Adherence data were collected from smartcards within the CPAP machine after three months of treatment. RESULTS: Fifteen youth were adherent to CPAP therapy and 10 were not adherent. CPAP-adherent youth demonstrated significant changes in two domains of OSAS-specific QoL when compared to nonadherent youth: decreased sleep disturbance and decreased caregiver concern. CONCLUSIONS: CPAP adherence appears to be associated with positive changes in OSAS-specific QoL domains. It will be important for future research and clinical work to examine strategies for improving CPAP adherence in youth with OSAS.

Conceptual Model of Lean Body Mass in Pediatric Inflammatory Bowel Disease.

Youth with inflammatory bowel disease (IBD) demonstrate deficits in lean mass (LM) placing them at increased risk for future health problems, including reduction of bone mass and impaired bone architecture. Research suggests that deficits in LM are multifactorial, including influences from the disease and its treatment, and health behaviors such as diet and physical activity. Based on a systematic literature review examining factors related to LM deficits in IBD, this article presents a conceptual model to explain the development of LM in youth with IBD. The model considers predictors of LM across 4 domains: demographic; medical; diet; and physical activity. Much existing research is cross-sectional, but suggests multiple factors work together to promote or inhibit LM accrual in youth with IBD. The conceptual model, developed based on empirical findings to date, can be used to understand and further elucidate the process through which LM is developed and maintained, to inform the development of empirically supported clinical interventions, and to guide future research objectives and priorities.

Evidence of Disturbed Sleep in Children With Eosinophilic Esophagitis and Persistent Epigastric Pain.

Objective: To determine whether the experience of persistent epigastric pain is associated with sleep disturbances in children with eosinophilic esophagitis (EoE). We hypothesized that children with EoE and persistent epigastric pain would (1) self-report greater current and worst pain severity, and (2) experience more disturbed sleep on objective and subjective measures in comparison with children with EoE but no persistent pain and healthy children. Methods: Fifty children with EoE were recruited for this cross-sectional study, of which 24 (48%) reported experiencing persistent epigastric pain. The remaining 26 (52%) children with EoE denied experiencing persistent pain. An additional 25 healthy children without EoE or persistent pain were included. All children provided severity ratings of current pain and worst pain experienced over the past week. Children then completed 12 consecutive nights of ambulatory sleep monitoring via actigraphy in the home. Caregivers provided information regarding their child's sleep patterns and internalizing symptoms. Results: Children with EoE and persistent pain reported significantly greater severity of current pain (p < .001) and worst pain over the past week (p < .001) compared with EoE without persistent pain and healthy children. Compared with the other groups, children with EoE and persistent pain also demonstrated greater actigraphic sleep disturbances, lower sleep efficiency (p = .004) and greater wake after sleep onset (p = .034). Conclusions: This study provides novel evidence that a significant proportion of children with EoE experience persistent symptoms of epigastric pain. Persistent pain was associated with significant sleep disturbances in children with EoE.

Disease-Related Predictors of Health-Related Quality of Life in Youth With Eosinophilic Esophagitis.

Objective: To evaluate relations between health-related quality of life (HRQoL) and clinical symptom presentation in youth with eosinophilic esophagitis (EoE). We hypothesized that presence of dysphagia, reflux, nausea/vomiting, and epigastric pain would be related to poorer HRQoL. In predictive models, it was hypothesized that dysphagia, reflux, nausea/vomiting, and epigastric pain would each significantly and uniquely predict poorer HRQoL. Methods: This cross-sectional, two-study design included 91 dyads comprised children with EoE and their respective caregivers across two tertiary children's hospitals, Site 1 in the Midwest (N = 47) and Site 2 in the Deep South (N = 44). Youth and their caregivers both completed questionnaires addressing HRQoL and EoE symptoms during clinic visits. Results: Per youth self-report, epigastric pain was found to be a significant predictor of poor physical and psychosocial HRQoL. Per caregiver-proxy reports, epigastric pain was found to be a significant predictor of poor physical HRQoL. Conclusions: The clinical symptoms of EoE, specifically epigastric pain, were found to be predictive of the youth's HRQoL. Targeted interventions to help youth with EoE better manage their specific symptom experiences could ultimately improve HRQoL.

Depressive Symptoms and Sleep Efficiency Sequentially Mediate Racial Differences in Temporal Summation of Mechanical Pain.

BACKGROUND: Racial differences in endogenous pain facilitatory processes have been previously reported. Evidence suggests that psychological and behavioral factors, including depressive symptoms and sleep, can alter endogenous pain facilitatory processes. Whether depressive symptoms and sleep might help explain racial differences in endogenous pain facilitatory processes has yet to be determined. PURPOSE: This observational, microlongitudinal study examined whether depressive symptoms and sleep were sequential mediators of racial differences in endogenous pain facilitatory processes. METHODS: A total of 50 (26 African American and 24 non-Hispanic white) community-dwelling adults without chronic pain (mean 49.04 years; range 21-77) completed the Center for Epidemiological Studies Depression Scale prior to seven consecutive nights of sleep monitoring with actigraphy in the home environment. Participants subsequently returned to the laboratory for assessment of endogenous pain facilitation using a mechanical temporal summation protocol. RESULTS: Findings revealed greater depressive symptoms, poorer sleep efficiency, and greater temporal summation of mechanical pain in African Americans compared to non-Hispanic whites. In a sequential mediation model, greater depressive symptoms predicted poorer sleep efficiency (t = -2.55, p = .014), and poorer sleep efficiency predicted enhanced temporal summation of mechanical pain (t = -4.11, p < .001), particularly for African Americans. CONCLUSIONS: This study underscores the importance of examining the contribution of psychological and behavioral factors when addressing racial differences in pain processing. Additionally, it lends support for the deleterious impact of depressive symptoms on sleep efficiency, suggesting that both sequentially mediate racial differences in endogenous pain facilitation.

Topical Review: Eosinophilic Esophagitis in Children: Implications for Health-Related Quality of Life and Potential Avenues for Future Research.

OBJECTIVE: To characterize the health-related quality of life (HRQoL) of children with eosinophilic esophagitis (EoE) as well as generate novel hypotheses for future research in this pediatric population. METHOD: A literature review was completed using PubMed and the keywords below. RESULTS: Research has shown that for children with EoE and their parents, symptom experiences and recommended treatments can have a negative impact on HRQoL. However, studies have yet to adequately address mechanisms that may help explain why this is. Areas of interest include sleep quality and disturbances, the experience of pain, and the presence of internalizing symptoms, all of which have the potential to uniquely and synergistically impact HRQoL. CONCLUSION: With greater understanding of the associations among sleep, pain, internalizing symptoms, and HRQoL in children with EoE may come enhanced therapies that substantially improve the quality of their health care.