Search

Objective: Identify factors associated with reduced emotional well-being (EWB) among family caregivers of children with more complex special health care needs (SHCN)., Methods: We applied gradient boosted trees (GBTs) to the 2016-2021 National Survey of Children's Health to identify factors associated with questions assessing (1) global mental health, (2) parental coping, and (3) parental aggravation among family caregivers of children with more complex SHCN. We then conducted adjusted logistic regression and post-hoc margins analyses to describe the relationships between GBT-identified factors and caregiver EWB outcomes., Results: Our GBT models' area under the curve (AUC) scores ranged from 0.69-0.77. Among our sample, (1) caregiver reported lack of emotional support, (2) increased levels of frustration and effort in getting their child needed health services, and (3) the presence of child emotional and behavioral conditions were factors associated with reduced caregiver EWB. In margins analyses of adjusted regression models, GBT-identified factors were associated with significantly higher likelihoods of adverse caregiver EWB outcomes. For example, compared to caregivers who reported a source of emotional support, the predicted probabilities of experiencing poor/fair mental health (13.7% vs. 7.8%), reduced parental coping (8.0% vs. 2.1%), and frequently feeling bothered by (9.9% vs. 5.4%) and angry with (3.5% vs. 1.5%) their child were higher among caregivers who lacked emotional support., Conclusion: In addition to enhanced care coordination support, future efforts aiming to improve well-being among family caregivers of children with more complex SHCN could consider targeting caregiver emotional support and/or treatment of child emotional and behavioral conditions., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objective: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC)., Methods: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics., Results: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being., Conclusion: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objectives: Children with medical complexity (CMC), a subgroup of children with special health care needs (CSHCN) with the most serious medical conditions and disabilities, are at risk for negative effects from poor oral health. CSHCN have high rates of poor oral health including cavities. This study aimed to compare oral health status between CMC and CSHCN., Methods: This was a cross-sectional analysis of the 2016-17 National Survey of Child Health data. CMC and CSHCN were identified using validated algorithms. The primary outcome was oral health status; secondary outcomes included dental service use. Bivariate analyses compared prevalence and service use by medical complexity status. Multivariable logistic regression assessed oral health outcomes by complexity, adjusting for influencing variables., Results: Of 16,178 CSHCN ages 1-17 years, 6% were CMC and 94% were non-CMC CSHCN. Compared to CSHCN, CMC had a higher prevalence of fair/poor teeth conditions (19% vs 9%; p<0.001) and higher odds for fair/poor teeth conditions after adjusting for socioeconomic factors (aOR: 1.54; 95% CI: 1.01-2.34). There was no statically significant difference between groups when assessing cavities, toothache, or receipt of most preventive dental services., Conclusion: 1 in 5 CMC are reported by caregivers as having poor oral health including cavities, despite high rates of receiving preventive dental services. After adjusting for socioeconomic factors, medical complexity remained associated with fair or poor teeth conditions. Understanding potentially modifiable targets could further help families of CMC prioritize dental needs and potentially reduce negative effects on overall health., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)

Objective: Examine the longitudinal association between family experiences of care coordination (FECC) and health-related quality of life (HR-QOL) for family caregivers of children with medical complexity (CMC)., Methods: A longitudinal survey of family caregivers of CMC was completed between July 2018 and June 2020. Baseline data were collected at initial contact with a regional complex care center; follow-up data were collected 12 to 16 months later. Assessed receipt of care coordination and caregiver HR-QOL via FECC questionnaire and Center for Disease Control's HR-QOL-14 measure, respectively. Baseline and follow-up results were compared via McNemar's and Wilcoxon signed-rank tests. Relationships between changes in FECC and changes in HR-QOL were examined using multivariable logistic regression., Results: Of 185 eligible, 136 caregivers enrolled and completed baseline surveys (74%) and 103 (76% initial sample) follow-up surveys. Caregivers reported significant improvements in 8 of 9 FECC measures after 1 year of care within a complex care center (all P < .05). In contrast, caregiver HR-QOL (general health status, unhealthy days, symptom days) remained stable over the study period (all P > .05) except for monthly days of poor sleep (baseline vs follow-up median; 16 vs 15 [P = .05]). At both timepoints, >20% participants rated their general health status as fair-to-poor, and >50% reported frequent poor sleep and fatigue. No significant associations were observed between changes in FECC and changes in HR-QOL., Conclusions: After receiving 1 year of care through a complex care center, CMC family caregivers report improvement in care coordination but not in HR-QOL. Caregivers' continued mentally unhealthy days and negative mental symptom days highlight the need for a directed intervention., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to disclose., (Copyright © 2024 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Context: Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences., Objective: To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions., Methods: This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated., Results: Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents., Conclusion: Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Many patients with advanced cancer describe pain as a debilitating symptom that greatly interferes with daily activities and enjoyment of life. Psychosocial interventions can improve cancer-related pain but rarely address spiritual concerns (e.g., loss of meaning, peace), which can influence the pain experience for those facing life-threatening illness. To address these needs, we systematically developed and pilot tested a novel psychosocial intervention called Meaning-Centered Pain Coping Skills Training (MCPC). In this randomized controlled trial, we aim to determine MCPC's efficacy for reducing pain interference (primary outcome) and improving secondary outcomes. We will also estimate MCPC's cost-effectiveness., Method/design: Patients (target N = 210) with advanced solid tumor malignancies (Stage IV) and clinically-elevated pain interference will be enrolled and block randomized with equal allocation to MCPC + enhanced usual care or enhanced usual care alone. MCPC's four, videoconferenced, 45-60 min weekly sessions will be individually delivered by trained study therapists. Primary (pain interference) and secondary (pain severity, anxiety and depressive symptoms, pain self-efficacy, social support, spiritual well-being) patient-reported outcomes will be assessed at baseline, and 8-weeks (primary endpoint) and 12-weeks after baseline., Conclusion: Our MCPC intervention is the first to systematically address the biopsychosocial-spiritual aspects of pain in patients with advanced cancer. If MCPC demonstrates efficacy, next steps will involve hybrid efficacy-effectiveness and implementation work to broaden access to this brief, manualized, remotely-delivered intervention, with the goal of reducing suffering in patients with life-threatening illness., Competing Interests: Declaration of Competing Interest The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: To evaluate treatment patterns and outcomes of patients in the United States who received antivascular endothelial growth factor (anti-VEGF) agents for wet age-related macular degeneration (AMD)., Design: Retrospective study PARTICIPANTS: Patients with wet AMD., Methods: Using the Intelligent Research in Sight Registry, we studied patients with wet AMD who received ≥1 anti-VEGF injection, who were ≥50 years old, and with ≥1.5 years of follow-up. Patients were grouped based on follow-up duration (in years): ≥1.5 (cohort 1), ≥2.5 (cohort 2), and ≥3.5 (cohort 3)., Results: Patient characteristics were similar between treatment groups. 36.8%, 34.5%, and 39.2% of ranibizumab, aflibercept, and all anti-VEGF eyes, respectively, had an injection interval <8 weeks in length at the end of year 1. Results were similar at year 2 and 3. In cohorts 1-3, visual acuity (VA) changes from baseline ranged from 0.3 to 0.7 (year 1), -1.3 to -1.7 (year 2), and -2.8 to -3.1 (year 3) Early Treatment Diabetic Retinopathy Study letters. By the end of year 3, 41%, 39%, and 42% of ranibizumab, aflibercept, and all anti-VEGF eyes, respectively, had discontinued treatment (no injection for >6 months)., Conclusion: Approximately one-third of eyes had injection intervals <8 weeks in length at the end of year 1. VA was slightly better at the end of year 1 and declined after the first year despite treatment. By the end of year 3, more than one-third of eyes had discontinued treatment. Given the high treatment burden, wet AMD patients may benefit from more durable approaches that require less frequent dosing., (Copyright © 2021 Canadian Ophthalmological Society. Published by Elsevier Inc. All rights reserved.)

Objective: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level., Methods: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes., Results: Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0)., Conclusions: Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed., (Copyright © 2022 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objectives: Care coordination between schools and medical providers promotes child health, particularly for children with physical, emotional, and behavioral challenges. The purpose of this study was to assess caregivers' reports of provider-school communication for their children. Further, the study assessed if communication rates varied by child demographic or health conditions., Methods: This study was a cross-sectional analysis of the 2016-2017 National Survey of Children's Health focused on school-aged children (age 6-17 years; n = 18,160). Weighted frequencies overall and stratified by provider-school communication status are reported. Multivariable logistic regression examined associations of provider-school communication., Results: Only 23.5% of the total sample reported provider-school communication. The highest caregiver-reported communication prevalence was for children with diabetes (68.0%). Behavioral/mental health conditions, chronic physical health conditions or having increased medical complexity and needs were significantly associated with increased communication compared to those without these conditions. Odds Ratio (OR) and 95% Confidence Intervals (CI) for children with a behavioral/mental health condition were OR: 1.28; CI: 1.02 to 1.61, for children with a chronic physical health condition were OR: 1.37; CI: 1.15 to 1.63 and for children with special health care needs or with medical complexity were OR: 2.15; CI: 1.75 to 2.64 and OR: 1.77; CI: 1.09 to 2.87, respectively. Significant communication differences existed for every health condition (P < 0.05) except for children who had a blood disorder (P = 0.365)., Conclusions: Caregiver perception of provider-school communication is low and differences in reported rates existed between health conditions and complexity status. Further work is needed to support provider-school-family communication for children with physical, mental, behavioral, and complex health conditions., (Copyright © 2022 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objective: Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center., Methods: We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework., Results: We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs., Conclusions: Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care., (Copyright © 2021 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

To better understand the link between spinal cord impact and the resulting tissue damage, computational models are often used. These models typically simulate the spinal cord as a homogeneous and isotropic material. Recent research suggests that grey and white matter tissue differences and directional differences, i.e. anisotropy, are important to predict spinal cord damage. The objective of this research was to characterize the mechanical properties of spinal cord grey and white matter tissue in confined compression. Spinal cords (n = 12) were harvested immediately following euthanasia from Yorkshire and Yucatan pigs. The spinal cords were flash frozen (60 s at -80 °C) and prepared into four types of test samples: grey matter axial, grey matter transverse, white matter axial, and white matter transverse. Each sample type was thawed, and subsequently tested in confined compression within 6 h of euthanasia. Samples were compressed to 10% strain at a quasi-static strain rate (0.001/sec) and allowed to relax for 120 s. A quasi-linear viscoelastic model combining a first-order exponential with a 1-term Prony series characterized the loading and relaxation responses respectively. The effect of tissue type (grey matter vs. white matter), direction (axial vs. transverse), and their interaction were evaluated with a two-way ANOVA (p < 0.05) with peak stress, aggregate modulus, and relaxation time as dependent variables. This study found grey matter to be 1.6-2 times stiffer than white matter and both grey and white matter were isotropic in compression. These findings should be emphasized when studying SCI biomechanics using computational models., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Objective: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL)., Methods: From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination., Results: In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93)., Conclusions: CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL., (Copyright © 2020 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background & Aims: Hepatocellular carcinoma (HCC) outcomes among Asians may differ by the Asian ethnic subgroup. We aim to evaluate the impact of the Asian ethnic subgroup on HCC tumor stage, treatment received, and overall survival among US adults., Methods: Using the 2004-2012 Surveillance, Epidemiology, and End Results U.S. cancer registry, we retrospectively evaluated disparities in HCC tumor stage at diagnosis, HCC treatment received, and overall survival among Asian adults, stratified by Asian ethnic subgroups. Multivariate regression models evaluated the independent impact of Asian ethnic subgroups on the HCC tumor stage at diagnosis, treatment received, and overall long-term survival., Results: Among 8160 Asians with HCC, Southeast Asian (SEA) patients accounted for 26% of all HCC, followed by Chinese (CH) (22%), and Filipinos (FP) (14.0%) patients. Japanese (JP) patients were significantly older than those of the other subgroups (mean 71.1, SD 10.8, P < 0.01). When evaluating HCC stage, FP patients were less likely to have localized HCC and less likely to have HCC within the Milan criteria than CH HCC patients. When evaluating HCC treatment, pacific islanders (PI), FP and SEA patients were significantly less likely to any receive HCC treatment than CH patients. Overall five-year HCC survival was highest among CH HCC patients (33.1%) and lowest among FP (19.9%) and JP patients (22.0%)., Conclusion: Among Asians with HCC in the US, significant disparities among Asian ethnic subgroups exist. More advanced disease was seen among FP patients, less HCC treatment was seen among FP and SEA patients, and significantly higher mortality was seen among FP, SEA, and JP patients with HCC.