Children, Volume 4, Issue 5 (May 2017) – 12 articles

Little is known about the pattern of genetic testing and frequency of genetic diagnoses among children enrolled in structured complex care programs (CCPs). Such information may inform the suitability of emerging genome diagnostics for this population. The objectives were to describe the proportion of children with undiagnosed genetic conditions despite genetic testing and measure the testing period, types and costs of genetic tests used. A retrospective analysis of 420 children enrolled in Toronto’s Hospital for Sick Children’s CCP from January 2010 until June 2014 was conducted. Among those who underwent genetic testing (n = 319; 76%), a random sample of 20% (n = 63) was further analyzed. A genetic diagnosis was confirmed in 48% of those who underwent testing. Those with no genetic diagnosis underwent significantly more genetic tests than those with a confirmed genetic diagnosis [median interquartile range (IQR): six tests (4–9) vs. three tests (2–4), p = 0.002], more sequence-level tests and a longer, more expensive testing period than those with a genetic diagnosis [median (IQR): length of testing period: 4.12 years (1.73–8.42) vs. 0.35 years (0.12–3.04), p < 0.001; genetic testing costs C$8496 ($4399–$12,480) vs. C$2614 ($1605–$4080), p < 0.001]. A genetic diagnosis was not established for 52% of children. Integrating genome-wide sequencing into clinical care may improve diagnostic efficiency and yield in this population. Full article

Children with medical complexity (CMC) are a growing population of diagnostically heterogeneous children characterized by chronic conditions affecting multiple organ systems, the use of medical technology at home as well as intensive healthcare service utilization. Many of these children will experience either a respiratory-related complication and/or they will become established on respiratory technology at home during their care trajectory. Therefore, healthcare providers need to be familiar with the respiratory related complications commonly experienced by CMC as well as the indications, technical and safety considerations and potential complications that may arise when caring for CMC using respiratory technology at home. This review will outline the most common respiratory disease manifestations experienced by CMC, and discuss various respiratory-related treatment options that can be considered, including tracheostomy, invasive and non-invasive ventilation, as well as airway clearance techniques. The caregiver requirements associated with caring for CMC using respiratory technology at home will also be reviewed. Full article

Racial disparity in mental health service utilization (MHSU) persists, and youths are not an exception to the underutilization of services. Very limited research has been conducted on the determinants of MHSU among Black youth. Using a national sample of American Black youth, the current study investigated the association between demographic factors, socioeconomic status, psychiatric disorders, and self-rated health (SRH) on MHSU. We also tested the heterogeneity of the effects of SRH and psychiatric disorders based on ethnicity, gender, and their intersection. We used data from the National Survey of American Life-Adolescents supplement (NSAL-A), 2003–2004. The study enrolled 1170 Black youth between 13 and 17 years old including 810 African Americans and 360 Caribbean Blacks. Age, gender, ethnicity, socioeconomic status, SRH, 12-month psychiatric disorders (Composite International Diagnostic Interview modified version), and MHSU (last year) were measured. Logistic regressions were used for data analysis. Ethnicity (odds ratio (OR) = 0.33, 95% confidence interval (CI) = 0.17–0.65), subjective socioeconomic status (OR = 1.43, 95% CI = 1.09–1.88), SRH (OR = 2.45, 95% CI = 1.00–6.37), and psychiatric disorders (OR = 2.17, 95% CI = 1.05–4.48) were associated with MHSU. Age, gender, and objective socioeconomic status were not associated with MHSU. Gender and ethnicity did not interact with SRH and psychiatric disorders on MHSU. Actual and perceived need both universally influence Black youths’ likelihood of MHSU, regardless of their ethnicity and gender. Ethnicity and perceived socioeconomic status also play unique roles in MHSU. Future research is needed to understand pathways to MHSU for Black youth who both have and perceive mental health needs. There is also a need to find ways to promote MHSU for those with a need for mental health services. Full article

Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = −0.241, p = 0.041) were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes. Full article

Most studies on the role of family environment in developing risk of obesity among youth have focused on parenting behaviors that are directly involved in energy balance in regional, non-representative White samples. Using a national sample of ethnically diverse Black youth, the current study tested the association between low family support and risk of obesity. We also tested the heterogeneity of this association based on gender, ethnicity, and their intersection. We used data from the National Survey of American Life-Adolescent Supplement (NSAL-A), a national survey of Black adolescents in the United States. The study enrolled 1170 African American and Caribbean Black 13–17 year old youth. Obesity was defined based on the cutoff points of body mass index (BMI) appropriate for age and gender of youth. Family support was measured using a five-item measure that captured emotional and tangible social support. Age, gender, and ethnicity were also measured. Logistic regressions were utilized in the pooled sample, and also based on gender, ethnicity, and their intersection, to test the link between low family support and risk for obesity. Results: In the pooled sample, low family support was not associated with an increased risk of obesity (OR = 1.35, 95% Confidence Interval (CI) = 0.96–1.89). The association between low family support and risk of obesity was, however, significant among African American females (OR = 1.60, 95% CI = 1.01–2.55). There was no association for African American males (OR = 1.26, 95% CI = 0.82–1.92), Caribbean Black males (OR = 0.68, 95% CI = 0.01–54.85), and Caribbean Black females (OR = 0.78, 95% CI = 0.42–1.44). In conclusion, policies and programs that enable African American families to provide additional family support may prevent obesity among African American female youth. Future research should test the efficacy of promoting family support as a tool for preventing obesity among African American female youth. Full article

Alaska Native and American Indian children have among the highest prevalence of obesity in the United States. Canadian Aboriginal populations including First Nations also have high rates of obesity but obesity rates among children are noticeably lower. We highlight some of the important differences between American and Canadian approaches to healthy lifestyles and Aboriginal/Native health, including diet and physical activity, which may in part explain the differences in obesity prevalence. Specifically, the Canadian government provides a food subsidy program to bring perishable fruits and vegetable to remote, rural Canadian areas and secondly supports the use of traditional foods and harvesting/gathering through a number of government supported programs. Lastly, there may be a better sense of community and overall life satisfaction for Aboriginals compared with Alaska Natives, in part because of the incorporation of healthcare and other services within the larger overall community, as opposed to separate services as is the case for Alaska Natives. This perspective provides insight into some of these potential differences. Full article

Vitamin D is a fat-soluble vitamin that is important for calcium metabolism and plays an important role in the immune functions. The aim of this study was to measure neonatal and maternal 25-OH vitamin D serum levels in neonates with early onset sepsis. The study included fifty neonates with early onset sepsis (25 full-term and 25 preterm infants) and thirty age and sex matched healthy neonates as controls. After history taking and clinical examination, complete blood count, C-reactive protein and 25-OH vitamin D serum levels (neonatal and maternal) were measured for all neonates. The mean gestational age for neonates with sepsis was (37.5 ± 0.98 for full term and 34.1 ± 1.26 for preterm neonates). Neonatal and maternal 25-OH vitamin D serum levels were significantly lower in patients (6.4 ± 1.8 and 24.6 ± 2.2 nmol/L) than controls (42.5 ± 20.7 and 50.4 ± 21.4 nmol/L). Significant negative correlations between neonatal and maternal 25-OH vitamin D serum levels and all sepsis markers and significant positive correlations between neonatal and maternal 25-OH vitamin D levels were present. At cut-off values <20 nmol/L for neonatal and <42 nmol/L for maternal 25-OH vitamin D for detection of neonatal sepsis, the sensitivity, specificity, positive predicted value (PPV) and negative predicted value (NPV) were 84%, 79%, 94.7% and 82.3% for neonatal and 82%, 77%, 91.4% and 80.6% for maternal 25-OH vitamin D, respectively. Positive correlations between neonatal and maternal 25-OH Vitamin D serum levels are present and they are negatively correlated with all sepsis markers. They can be sensitive early predictors for early onset sepsis in neonates. Full article

The optimal care of children with medical complexity (CMC) requires involvement from a network of professionals that includes physicians, nurses, ancillary service providers, and educators. Pediatric health care providers typically have early and frequent contact with the families of CMC. Therefore, they are in a unique position to connect families to developmental, educational, and psychosocial supports. This article reviews important government and community programs that support CMC living in the United States. It outlines the educational rights of children with disabilities and offers practical tips for collaborating with Early Intervention and the public school system. The article also provides an overview of financial assistance programs, respite care services, and support groups that are beneficial to CMC and their families. Full article

Little is known regarding the subsequent course of non-alcoholic fatty liver disease (NAFLD) diagnosed in childhood. The objectives of this single-center study were to gather data on long-term health outcomes and to assess the feasibility of contacting former pediatric patients. In a large pediatric medical center, electronic records were searched to initially identify 162 former patients who had a liver biopsy between 2000 and 2010. Of these, 44 subjects met the criteria for age at follow-up (≥18 year) and biopsy-proven NAFLD, and were recruited via postal and electronic mail. Participants were invited to complete a brief telephone survey on current health status. Supplemental data was also obtained from pediatric medical charts of all subjects. At NAFLD diagnosis, 18% of subjects had diabetes, 91% were obese, 61% had NASH, and 56% had fibrosis on biopsy. At follow-up, 10 subjects (23%) responded to the survey. Based on the survey and chart review, after a mean follow-up of 4.5 years, 5 additional subjects developed diabetes for a period prevalence of 30%, and most subjects (78%) remained obese at last follow-up. Additional prospective studies are needed to fully describe the longitudinal risks associated with pediatric NAFLD, and will require multi-dimensional strategies to successfully recruit former patients. Full article

Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA). Full article

Despite advances in psychological interventions for pediatric chronic pain, there has been little research examining mindfulness meditation for these conditions. This study presents data from a pilot clinical trial of a six-week manualized mindfulness meditation intervention offered to 20 adolescents aged 13–17 years. Measures of pain intensity, functional disability, depression and parent worry about their child’s pain were obtained at baseline and post-treatment. Results indicated no significant changes in pain or depression, however functional disability and frequency of pain functioning complaints improved with small effect sizes. Parents’ worry about child’s pain significantly decreased with a large effect size. Participants rated intervention components positively and most teens suggested that the number of sessions be increased. Three case examples illustrate mindfulness meditation effects and precautions. Mindfulness meditation shows promise as a feasible and acceptable intervention for youth with chronic pain. Future research should optimize intervention components and determine treatment efficacy. Full article

Attention-deficit/hyperactivity disorder (ADHD) is pervasive among the pediatric population and new treatments with minimal adverse effects are necessary to be studied. The purpose of this article is to review current research studying mind–body therapies for treatment of children diagnosed with ADHD. Literature was reviewed pertaining to the effectiveness of movement-based therapies and mindfulness/meditation-based therapies for ADHD. Many positive effects of yoga, Tai Chi, physical activity, and meditation may significantly improve symptoms of ADHD among children. Full article