Transition to adult dental care from a pediatric hospital dental home for patients with special health care needs.

AIMS: This study describes patients with complex Special Health Care Needs (SHCN) transitioning from a pediatric hospital clinic dental home to adult care and evaluates effectiveness of transition practices. METHODS AND RESULTS: Demographics, medical/behavioral complexity, and documentation of transition processes were collected for patients graduated from the service in 2018/2019. An invitation to complete a survey assessing transition was sent to patients/guardians ≥ 14 months after the final visit. Seventy-nine patients graduated and 94% required accommodation for SHCN: 47% medical, 42% medical + behavioral, and 5% behavioral only. Of 63 eligible patients/guardians, 29 completed surveys. While 90% of surveyed patients had established some/all adult medical care, only 41% completed a dental visit, and less than 28% established a dental home. Medical/behavioral complexity, payer, and time since graduation did not impact having a visit. CONCLUSIONS: This study found ineffectiveness of departmental protocol for transition to adult dental homes for patients with SHCN. Developing an optimal transition process is complex and will require collaboration of all stakeholders. Introducing transition in early teen years, tracking progress at subsequent visits, assessing patient readiness, summarizing history for receiving providers, and verifying transition are elements of medical transition programs that should be included in dental transitions.

Inpatient dental consultations at a pediatric hospital: A single center 1-year review.

AIMS: Inpatient dental consultations done at a pediatric hospital in 2017 were analyzed to determine consult reasons, requesting departments, and patient characteristics. Findings were compared to a 2007 study from the hospital. METHODS AND RESULTS: Data were collected from medical records. Descriptive statistics and logistic regressions were calculated. In 2017, 300 consults were performed for 211 patients (1.8% of inpatients). hematology-oncology requested the most consults (63%). Evaluation prior to cancer treatment, cardiac surgery, or organ transplantation was the most common reason for consult requests (52%). Fifty-eight percent patients had a dental home; older patients were more likely to have a dental home (P < .001). Patients with a dental home were less likely to have caries (P = .047). Many patients with a dental home had caries (33% in 2007 and 29% in 2017); more patients without a dental home had caries (46% in 2007 and 38% in 2017). CONCLUSIONS: This study both supports the dental home concept and reveals that many children with a dental home have treatment needs. This indicates that medical providers should not equate having a dental home with having dental health and emphasizes the value of an in-hospital dental service to support the management of critically ill children.

One Year Follow-up of Outcomes from the Randomized Clinical Trial of the Building on Family Strengths Program.

Objectives Test the 12-month efficacy of an inclusive non-diagnosis-specific, parent education program with seven in-person sessions. Methods Parents of 110 children, 2-11 years old, with a variety of special health care conditions, were recruited to participate in a randomized clinical trial. At twelve months data from 104 parents were available for longitudinal analysis. Linear mixed models, with the interaction term of group by time, were used to assess the efficacy of the intervention over 12 months using data from 3 time points: baseline, 6 and 12 months. The outcome measures were self-efficacy, parent and child shared management of chronic condition, coping skills, parental depressive symptoms and quality of life. Results All of the outcomes improved within the intervention group over 12 months. Self-efficacy was the strongest outcome which remained significantly different from the control group 12 months post intervention, without any statistical adjustment (p = 0.045). The coefficient of the interaction term for study group (intervention or control) by time, quantifying the intervention effect, was statistically significant for four of five pre-specified study outcomes, favorably so toward the intervention group (p < 0.05, with the 5th outcome, parental depression, p = 0.052). Conclusions for Practice The Building on Family Strengths intervention was efficacious in improving self-efficacy, shared management, coping skills, and quality of life and decreasing depressive symptoms in parents, in particular for parents who were most impacted by the lack of these strengths and skills at baseline. These results are encouraging and future studies to investigate the efficacy of this intervention in an Internet-based setting or other modalities are encouraged.

Longitudinal Impact of a Randomized Clinical Trial to Improve Family Function, Reduce Maternal Stress and Improve Child Outcomes in Families of Children with ADHD.

Objective Evaluate the efficacy of a 12 month nursing case-management intervention over a period of 18 months, 6 months after the end of intervention, for families of children attention deficit hyperactivity disorder (ADHD). Methods Mother and child dyads were enrolled to participate in a randomized controlled clinical trial. Children were 4-18 years old. Data were collected at baseline, 6, 12, and 18 months or 6 months after the termination of direct intervention. Longitudinal analyses, using generalized estimating equations, were conducted to assess change in study outcomes relating to family function, maternal stress, and child behavior over the 18 month period. Results Compared to control families, some family function outcomes were moderately improved in the intervention group. In particular, intervention families demonstrated substantial improvement in implementing family behavior controls (p value = 0.038) and improvement in family satisfaction (not statistically significant p = 0.062). Although there was improvement in the overall family function measure there was not a statistically significant difference between groups. Maternal stress and child behavior outcomes were not significantly different between control and intervention groups by the end of the intervention. Conclusions for Practice Addressing ADHD is complex and requires the assessment of comorbidities that might exacerbate negative behavior. Our findings support the latest American Academy of Pediatrics guidelines to use behavioral therapy as the first line of treatment in young children. Nursing case-management interventions that provide direct family education and improve family function, especially with respect to providing structure and behavior control, may complement and facilitate behavioral therapy for treatment of ADHD and improving child behavior.

Sleep Problems in Children With Agenesis of the Corpus Callosum.

BACKGROUND: Very little is known about sleep habits in children with agenesis of the corpus callosum (ACC). The purpose of this investigation was to evaluate sleep problems in children with ACC and examine the association with quality of life. METHODS: We performed a cross-sectional, anonymous, internet-based survey offered to parents of children with ACC, aged five to 18 years. The Children's Sleep Habits Questionnaire (CSHQ) and pediatric quality of life (PedsQL) were used to assess sleep habits and quality of life, respectively. Associations between the total and all subdomains of CSHQ and PedsQL were tested. RESULTS: The final sample included 66 parents of children with ACC. Overall, 78% of the children had clinically significant sleep problems, using a cutoff score of 41 on the CSHQ. Compared with a prior national sample of typically developing children, children with ACC scored significantly higher overall and in all subdomains of the CSHQ. The overall CSHQ and PedsQL were moderately correlated (r = -0.485, P < 0.001), indicating that children with more sleep problems had worse quality of life. In addition, the total CSHQ correlated with all subdomains of the pediatric quality of life, including emotional (r = -0.515, P < 0.01), social (r = -0.394, P < 0.01), physical (r = -0.263, P < 0.01), and school (r = -0.362, P < 0.01). These associations remained statistically significant in multivariable regression models controlling for age and gender. CONCLUSIONS: Sleep problems are common and associated with lower quality of life in children with ACC.

Relationship between sleep disturbance and functional outcomes in daily life habits of children with Down syndrome.

OBJECTIVES: The goal of this study was to describe sleep patterns and accomplishment of daily life habits in children with Down syndrome (DS) and to investigate the relationship between subjective indicators of sleep disturbance with functional outcomes in daily life. DESIGN: Cross-sectional study with an Internet sample. SETTING: Online survey filled out at home. PARTICIPANTS: 110 parents of children with DS and 29 parents of children with typical development (TD), age 5 to 18 years. INTERVENTIONS: N/A. MEASUREMENTS AND RESULTS: Children's Sleep Habits Questionnaire was employed to collect information about sleep disturbances in 8 domains (subscales) and a total score. The Life Habits (Life-H) questionnaire sampled information about daily life habits in 11 domains. Multivariable regression modeling was used to assess the associations between sleep disturbances and the accomplishment of daily life habits. Sleep disordered breathing (SDB) was a significant explanatory factor in 10 of 11 daily life habits and the total Life-H score. Sleep anxiety and parasomnias significantly influenced the accomplishment of life habits in children with DS as compared to children with typical development. When evaluated in multivariable models in conjunction with the other 7 domains of sleep disturbances, SDB was the most dominant explanatory factor for accomplishment of life habits. CONCLUSIONS: Sleep disturbances are negatively related to accomplishment of daily life functions. Prevention and treatment of sleep problems, particularly sleep disordered breathing, in children with DS may lead to enhanced accomplishment of daily life habits and activities.

A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions.

To test the 6-month efficacy of an inclusive non-diagnosis-specific, 7-session parent education curriculum on five pre-specified outcomes. A randomized clinical trial with 100 parents having children 2-11 years with a variety of chronic conditions was conducted. The 7-session curriculum, Building on Family Strengths (BFS), was created by an interdisciplinary pediatric team as a derivative of a successful adult chronic disease self-Management program distributed by Stanford University Patient and Education Research Center. Despite no differences at baseline, intervention participants had higher scores on self-efficacy to manage the child's condition (p = 0.049), coping with childhood chronic illness (p < 0.001), parent-child shared management of the condition (p = 0.097), family quality of life (p = 0.010), and, lower scores on a measure of depressive symptoms (p = 0.046) at the 6-month end-point. Average effect-sizes were modest across outcomes (7-11% improvement) with intervention participants having baseline scores in the least favorable quartile improving the most (12-41%). This research provides evidence that the BFS curriculum can yield significant improvements across five important outcomes for parents of children with various chronic conditions. Parent education programs should be offered especially to parents of children with chronic health conditions, regardless of the type of condition, who lack adequate support. These programs can help parents cope with and manage their children's chronic conditions more effectively.

Longitudinal course and impact of insomnia symptoms in adolescents with and without chronic pain.

UNLABELLED: This study aimed to 1) examine trajectories of insomnia symptoms in adolescents with chronic pain compared to their healthy peers; 2) evaluate psychological and behavioral risk factors for longitudinal insomnia symptoms; and 3) evaluate insomnia as a predictor of quality of life, activity limitations, and healthcare utilization over 12 months. Participants included 61 adolescents with chronic pain and 60 youths without chronic pain (12-18 years; 72% female). Questionnaires were completed at enrollment, 6 months, and 12 months and assessed pain intensity, insomnia symptoms, sleep hygiene, presleep arousal, depression, pubertal status, activity limitations, quality of life, and healthcare utilization. Insomnia symptoms persisted for both groups and remained higher at all time points for youths with chronic pain. Generalized estimating equations modeling identified 3 risk factors for longitudinal insomnia symptoms: having chronic pain, poorer sleep hygiene, and higher depressive symptoms. Insomnia symptoms also predicted poorer quality of life over time and were associated with more frequent healthcare utilization. Findings suggest that sleep problems are persistent and associated with negative impact for youths with chronic pain. Treatment of insomnia symptoms in youths with chronic pain may lead to improvements in quality of life and reductions in healthcare costs. PERSPECTIVE: Insomnia symptoms are persistent over a 12-month period and are associated with negative impact for youths with chronic pain. These findings suggest that treatment of insomnia symptoms in youths with chronic pain may lead to improvements in quality of life and reductions in healthcare costs.

Sleep measurement and monitoring in children with Down syndrome: a review of the literature, 1960-2010.

Children with Down syndrome (DS) are at risk for sleep disturbances due to the anatomical features of the syndrome. Over the past 50 years research studies have measured sleep in children with DS to characterize sleep architecture and its relation to developmental delay. In the 1980s sleep disordered breathing (SDB) was recognized as a major cause of sleep disturbance in DS. The aim of this comprehensive review is to synthesize studies and present the historical context of evolving technologies, methodologies, and knowledge about SDB and DS. Future research opportunities and practice implications are discussed.

Parents of children with special health care needs who have better coping skills have fewer depressive symptoms.

OBJECTIVES: Describe and quantify coping skills and prevalence of depressive symptoms in parents of children with special health care needs (CSHCN). Describe the association of coping skills with parental depressive symptoms, severity of child's condition and family demographic characteristics. METHODS: A baseline questionnaire was administered to parents of CSHCN 2-11 years old. Data were analyzed cross-sectionally. Coping skills were assessed using F-COPES, and depressive symptoms were measured using CESD 10, both previously tested tools. Multivariable regression models measured the association of coping skills with depressive symptoms, parents' rating of severity and demographic characteristics. RESULTS: Among 129 parents 54% had depressive symptoms above standard normal threshold. Parents with better coping skills had significantly fewer depressive symptoms. The severity of child's condition, parental marital status and employment status were significantly related to depressive symptoms; after accounting for these factors, better coping skills were still associated with fewer depressive symptoms (P-value < 0.05). CONCLUSIONS: Parents of CSHCN are at increased risk for depressive symptoms, especially if single and unemployed. In this study better parental coping skills were associated with fewer depressive symptoms, regardless of the severity of child's condition; and remained significant after accounting for demographic factors. Educational interventions to improve coping skills for parents of children who have a variety of diagnoses and severity levels may potentially mitigate the manifestation of depressive symptoms and in turn improve parenting.

Body mass index of children with severe early childhood caries.

PURPOSE: The purpose of this retrospective case study was to describe the body mass index (BMI) of children with severe early childhood caries (5-ECC) receiving dental rehabilitation under general anesthesia. METHODS: Demographics, BMI percentile, decoyed, missing, or filled teeth (dmft), and the number of pulp-involved teeth were analyzed for 293 healthy 2- to 5-year-olds (mean = 47.2 months). Weight groups were assigned using current Centers for Disease Control (CDC) BMI-for-age and gender definitions. Descriptive statistics were calculated and multivariate analysis used to evaluate BMI's association with oral health measures. BMI distribution of the subjects was compared graphically and with the use of confidence intervals to a reference population with similar demographics. RESULTS: The distribution of subjects' BMI percentiles was: underweight=11l%; normal weight=67%; at risk for overweight=9%; and overweight=11%. The mean dmft was 11.8; BMI percentile did not correlate with dmft or the number of pulp-involved teeth. Significantly, more children in the sample were underweight than in the reference population (11% vs. 5%). CONCLUSION: In this sample of S-ECC children, the BMI percentile was not correlated with dmft or the number of pulp-involved teeth, even After adjusting for confounding factors. Thirty-two percent had unhealthy weights, as currently defined by the Centers for Disease Control and Prevention.

Measuring parent-child shared management of chronic illness.

UNLABELLED: Over time, most children with special health needs must become partners in their disorder management. Because most care of chronic conditions takes place in the home, parents assume significant responsibility in starting and supporting the child's role in parent-child shared management over time. This article describes findings from analysis of one attempt to measure this important construct. METHODS: Cross-sectional descriptive study with 129 parents of children with chronic conditions. RESULTS: Internal consistency of the shared management scale was adequate (Cronbach's Alpha: overall scale, 0.91; and subscales: desire, 0.79; knowledge, 0.76; and current actions, 0.86). Observed relationships were in theoretically expected directions. In unadjusted univariate analyses, there were statistically significant associations between parent-child shared management and each of the following variables: (a) condition grouping and severity, (b) parent self-efficacy and coping, (c) amount and frequency of child's limitation to do things, and (d) emergency visits in the past 6 months (all at p < 0.01 levels). Adjusted multivariable analysis retained condition severity, parent self-efficacy, and coping as significant factors. CONCLUSIONS: The parent-child shared management tool can be used in research to broaden understanding of this important construct and identify precursors and outcomes of high or low shared management in a family. Nurses might use the tool in clinical practice to more accurately gauge parent desire for, knowledge of, and current actions in support of parent-child shared management so interventions can be individualized to the family's unique wishes.

Characteristics of publicly insured children with high dental expenses.

BACKGROUND: Dental coverage is provided for all children with Medicaid in Washington State. The goal of this study was to illuminate the characteristics of a sample of Medicaid-enrolled children with high dental expenses. METHODS: Dental care utilization data for a 33-month period were obtained from Washington State's Medicaid database. For children, 0 to 6 years, these data were linked with a parent survey addressing oral health behaviors, knowledge, family history of caries, snacking patterns, and access to dental care. Children with dental expenses of $1,000 or more were classified as the "high-expense" group. Risk factors for the high-expense group were evaluated using multiple logistic regression. RESULTS: 345 children had at least one dental procedure including preventive and diagnostic care. Among these, 30 children (9 percent) incurred 64 percent of total dental expenses for the entire group. Parent perception of lack of dental coverage was associated with incurring high dental expenses. Children of Asian or Pacific Islander heritage were at disproportionately high risk compared to White children. Age of child and family history of caries were also associated with increased risk for high expenses. CONCLUSIONS: Not all low-income children on Medicaid are at high risk for caries. A combination of factors, including family history of caries and parent's perception of lack of dental insurance coverage, can potentially increase a child's likelihood for high-expense dental treatment. This study highlighted a small group of children with disproportionately high dental expenses. For some, earlier knowledge of coverage may have resulted in more timely access to preventive and diagnostic care, reducing the subsequent need for expensive restorative treatment.

The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life.

PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.

Trends in pediatric hospitalizations of children in washington state by insurance and chronic condition status, 1991-1998.

OBJECTIVE: To examine the possible impact of changes in the organization and management of the Medicaid program on hospitalization patterns for children with chronic and nonchronic conditions between January 1, 1991, and December 31, 1998. DESIGN: Longitudinal retrospective study of hospitalization patterns of children in 4 strata: Medicaid, non-Medicaid, chronic conditions, and nonchronic conditions. SETTING: Washington State. PATIENTS: Hospital discharge abstract records for all children aged 0 to 17 years profiled into those with and without a chronic condition, Medicaid, and non-Medicaid using a diagnosis-based classification system. MAIN OUTCOME MEASURES: Hospitalization and multiple hospitalization rates and length of hospital stay. RESULTS: In 1991, hospitalization and multiple hospitalization rates were higher for all Medicaid vs non-Medicaid children. From 1991 to 1998, there was a decrease in the hospitalization and multiple hospitalization rates for Medicaid children only. By 1998, rates for Medicaid children approximated those for non-Medicaid children. This decrease was greater for nonchronically ill children than for chronically ill children. Total hospitalizations in Medicaid children decreased by 4.5%. The mean length of stay in 1991 for all Medicaid hospitalized children was higher than that for non-Medicaid children (6.1 vs 5.1 days). By 1998, the length of stay decreased for both groups (5.7 vs 4.9 days). CONCLUSION: The declines in hospitalization and multiple hospitalization rates observed in Washington State Medicaid children from 1991 to 1998 may be the result of many statewide efforts to increase access and improve management for this population.