Screening for Quality of Life in a Neurology Tic Clinic Using Quality Improvement Methodology.

BACKGROUND: Tic disorders in children often co-occur with other disorders that can significantly impact functioning. Screening for quality of life (QoL) can help identify optimal treatment paths. This quality improvement (QI) study describes implementation of a QoL measure in a busy neurology clinic to help guide psychological intervention for patients with tics. METHODS: Using QI methodology outlined by the Institute for Healthcare Improvement, this study implemented the PedsQL Generic Core (4.0) in an outpatient medical clinic specializing in the diagnosis and treatment of tic disorders. Assembling a research team to design process maps and key driver diagrams helped identify gaps in the screening process. Conducting several plan-do-study-act cycles refined identification of patients appropriate to receive the measure. Over the three-year study, electronic health record notification tools and data collection were increasingly utilized to capture patients' information during their visit. RESULTS: Over 350 unique patients were screened during the assessment period. Electronic means replaced paper measures as time progressed. The percentage of patients completing the measure increased from 0% to 51.9% after the initial implementation of process improvement, advancing to 91.6% after the introduction of electronic measures. This average completion rate was sustained for 15 months. CONCLUSIONS: Using QI methodology helped identify the pragmatics of implementing a QoL assessment to enhance screening practices in a busy medical clinic. Assessment review at the time of appointment helped inform treatment and referral decisions.

Increasing Access to and Utilization of Behavioral Health Care Through Integrated Primary Care.

OBJECTIVES: To evaluate changes in access to and utilization of behavioral health (BH) services after the integration of psychologists into primary care clinics compared with clinics without integrated psychologists. METHODS: We integrated 4 of 12 primary care clinics within our academic health system. We used the median wait time for BH services as a proxy for changes in access and defined BH utilization as the percentage of primary care visits that resulted in contact with a BH clinician within 180 days. We compared changes in access and utilization from the year before integration (September 2015 to September 2016) with the 2 years after integration (October 2016 to October 2018) within integrated clinics and between integrated and nonintegrated clinics. We used difference-in-difference analysis to test the association of study outcomes with the presence of integrated psychologists. RESULTS: Access and utilization were similar across all practices before integration. After integration, BH utilization increased by 143% in integrated clinics compared with 12% in nonintegrated clinics. The utilization of BH services outside of the medical home (ie, specialty BH service) decreased for integrated clinics only. In clinics with integrated psychologists, 93% of initial BH visits happened on the same day as a need was identified. The median wait time for the 7% in integrated clinics who were not seen on the same day was 11.4 days (interquartile range = 5.3-17.7) compared with 48.3 days (interquartile range = 20.4-93.6) for nonintegrated clinics. CONCLUSIONS: A team-based integration model increased BH utilization and access.

Experiences of Pain and Quality of Life in Pediatric Intracranial Hypertension.

OBJECTIVE: To examine psychosocial correlates, specifically pain intensity, pain interference, and quality of life (QOL), in patients with pediatric intracranial hypertension. We hypothesized that parents and children who report higher levels of pain intensity and interference would be associated with lower QOL. METHODS: Eighty-three patients and their families seen in the pediatric intracranial hypertension clinic of a large pediatric hospital completed self-report and parent proxy measures on QOL, mood, and other psychosocial correlates. Bivariate correlations were conducted between parent proxy and self-reports and regression analyses between pain and psychosocial correlate variables were examined. RESULTS: Parent proxy and child reports were highly correlated. Body mass index (BMI) was a significant predictor of parent proxy report of pain intensity with higher BMI associated with higher parent proxy ratings of pain intensity. Parents reported significantly higher levels of pain interference for their children compared to child report. Parent ratings of child depression symptoms, BMI, and age were significant predictors of pain interference. Higher BMI and depression symptoms and younger age were associated with more pain interference. Overall QOL was similar to other headache populations but lower than other chronic illness and healthy populations. CONCLUSIONS: Pediatric intracranial hypertension is associated with decreased QOL. Body mass index was a significant predictor of pain intensity and interference and should be monitored closely in clinic. Clinical care should include psychosocial screening to identify patients who would benefit from interventions to reduce the impact of this condition.

Treatment of Functional Gait Abnormality in a Rehabilitation Setting: Emphasizing the Physical Interventions for Treating the Whole Child.

Objective: Conversion disorder has a significant impact on families and the healthcare system. A recent review suggests there is little uniformity in treating this population. This paper describes an inpatient treatment program emphasizing physical conditioning and less time uncovering the psychological underpinnings of the presentation. Design: This study included 100 pediatric patients admitted to an inpatient rehabilitation setting with lower extremity weakness/dysfunction not explained by a medical cause. Patients followed a 16-step goal hierarchy to increase physical function. Patients participated in three hours of therapy and met with a psychologist and teacher daily. Patient functioning was assessed at three time periods using the mobility items of the Functional Independence Measure for Children (WeeFIM). Results: Ninety-four patients completed the program. The average length of stay was 10 days. There were no significant differences between gender, length of stay, or insurance. Data was collected from 73 participants at a two-month follow-up. A repeated measures analysis of variance (ANOVA), using time points at admission, discharge, and follow-up, revealed significant improvements over time. Post-hoc contrasts showed differences with admission and discharge but no differences between discharge and follow-up, suggesting gains in mobility remained. Conclusion: This paper describes an inpatient program that effectively treats patients with conversion disorder in a relatively short period. The physical gains made during hospitalization persisted over time and suggest inpatient rehabilitation focusing on physical mobility could be a more financially beneficial approach than outpatient treatment. Future considerations include identifying a more robust assessment process for patients to determine other psychological characteristics that might impact successful, more short-term treatment.

The Role of Youth Coping Strategies and Caregiver Psychopathology in Predicting Posttraumatic Stress Symptoms in Pediatric Burn Survivors.

Caregiver psychosocial functioning is repeatedly linked with postburn adjustment in pediatric burn survivors. However, few studies have examined youth characteristics as predictors, such as coping strategies. Furthermore, research has not explored how caregiver psychopathology and youth coping strategies interact to predict youth postburn adjustment. The aim of this study was to examine how youth coping strategies and caregiver anxiety and depression predict youth posttraumatic stress symptoms (PTSS). Forty-six youth between 7 and 17 years old (M = 12.5, SD = 2.65) and their caregivers were recruited from two U.S. burn centers. Youth and parents completed questionnaires that assessed demographics, caregiver anxiety, and depression, youth self-reports of coping strategies, and youth PTSS. Burn injury data (e.g. TBSA, time since injury) was obtained from medical record reviews. Hierarchical regressions were conducted with caregiver psychopathology (depression, anxiety), youth coping strategies (active, avoidant, distraction, social support), and the interaction between caregiver psychopathology and youth coping strategies as predictors and youth PTSS as the outcome variable. Higher levels of caregiver anxiety (ßs = .36 to .42) and avoidance coping (ßs = .38 to .43) were associated with more PTSS. Caregiver anxiety and depression moderated the association between youth use of distraction coping and youth PTSS. These findings reinforce the importance of assessing psychosocial functioning in pediatric burn survivors and their caregivers, and providing interventions to promote better psychosocial outcomes. Coping strategies may help reduce PTSS and buffer against the harmful influence of caregiver psychopathology. Future research may wish to pilot interventions that promote healthy coping.

Timely Access to Mental Health Services for Patients with Pain.

Efficient access to pediatric mental health services is a growing concern as the number of patients increases and outpaces efforts to expand services. This study outlines interventions implemented using quality improvement (QI) science and methodology to demonstrate how a clinic embedded in a large children's hospital can improve access to the first appointment for a population seeking pain management services. METHODS: A process improvement project started with a QI team, whose members designed interventions to change scheduling practices. Initial changes involved decreased time between calls to families, and efforts to streamline notifications among clinicians. Additional interventions included a close examination of waitlist assignment based on appropriateness and assessing patient interest in treatment. RESULTS: Within 3 months of implementation, a significant decline in wait time occurred for patients seeking services for pain management, from 106 to 48 days. This change remained stable for 6 months. In light of a sharp increase in referrals and wait time during the study period, efforts to engage additional clinicians in managing referrals resulted in wait time to stabilize at an average of 63 days to the first appointment. This change remained for 10 months. Scheduling changes did not negatively affect other providers. CONCLUSIONS: This study demonstrates the application of QI science to improve patient access to mental health care. Future directions will focus on enhancing the use of the electronic health record, along with previsit family engagement.

Children with hypoplastic left heart syndrome have lower quality of life than healthy controls and children with other illnesses.

OBJECTIVE: Previous studies suggest that children with congenital cardiac diagnoses report lower quality of life when compared with healthy norms. A few studies have evaluated quality of life specifically in children born with hypoplastic left heart syndrome, a condition requiring several surgeries before age three. The aim of this study was to use an empirically validated and standardised measure - the Pediatric Quality of Life Inventory - to evaluate quality of life in children with hypoplastic left heart syndrome and compare the findings with similar, medically complicated samples. METHODS: The parent-report Pediatric Quality of Life Inventory was administered, and demographic information was collected through an internet portal. A total of 121 caregivers of children with hypoplastic left heart syndrome responded. The sample included children aged 2-18 years (M=10.81 years). Independent sample t-tests were used to compare our sample with published norms of healthy children and children with acute or chronic illnesses. RESULTS: Children with hypoplastic left heart syndrome were rated as having significantly lower overall quality-of-life scores (M=59.69) compared with published norms of children without medical diagnoses (M=83.00) and those with acute (M=78.70) or chronic (M=77.19) illnesses (p<0.001). Children with hypoplastic left heart syndrome complicated by a stroke or seizure (15%) reported the lowest quality of life. The results held for all subscales (p<0.001). CONCLUSIONS: Children with hypoplastic left heart syndrome appear to be a significantly vulnerable population with difficulties in functioning across psychosocial domains and across the age span. Further research is required to facilitate early identification of the need for resources for these children and families, especially for children who experience additional medical complications.

Implementation of an Outcome Measure in Pediatric Behavioral Health: A Process Improvement Initiative.

INTRODUCTION: Efforts to monitor outcomes in pediatric behavioral health are becoming a quality, financial, and regulatory imperative. The implementation of a broad-based measure to assess patient functioning at the start of pediatric psychology services, as well as at subsequent visits, has not been demonstrated. This article describes the systematic implementation of a measure of health-related quality of life (HRQOL) to assess functional impairment across an entire clinic population using quality improvement science and methodologies. METHODS: The Pediatric Quality of Life Inventory Generic Core 4.0 (PedsQL) was administered at initial and subsequent visits for all patients seeking treatment at a large, tertiary care pediatric psychology clinic in an academic pediatric medical center (Nationwide Children's Hospital, Columbus, Ohio). The goal of this project was to design a process change to support a 90% completion rate of this measurement tool by all clinicians. RESULTS: Within 16 months, the completion rate of the PedsQL increased from a baseline of 39% to the identified goal of 90%. This process change was within control limits (over 80%) for over 12 months. CONCLUSION: This study demonstrates the implementation of a systematic process for collection of outcome measures in a pediatric behavioral health care setting. Successful administration of an outcome measure at multiple time points during the care of children and adolescents in a large psychology clinic can allow for quantitative assessment of treatment progress and identify a pathway for administration of additional measures.

Anxiety Scores in Caregivers of Children with Hypoplastic Left Heart Syndrome.

OBJECTIVES: Caring for children with congenital heart disease places significant stress on caregivers. Minimal data exist evaluating stress levels in caregivers of children with hypoplastic left heart syndrome (HLHS). The goal of this study was to obtain baseline stress scores for caregivers of children with HLHS and determine if associations exist between scores and specific caregiver factors. STUDY DESIGN: A cross-sectional study using a web-based survey targeted towards caregivers of children with HLHS was performed. Baseline demographics of the caregiver and child with HLHS were obtained. Caregivers completed three validated questionnaires including the Pediatric Quality of Life Inventory (PedsQL), Parenting Stress Index- Short Form (PSI-SF) and the Pediatric Inventory for Parents (PIP). RESULTS: Four hundred fifty-nine caregivers completed at least one questionnaire. PSI-SF total score was 80.5 ± 23.1 (> 86 = significant stress), PIP frequency total score was 119.0 ± 37.2, and PIP difficulty total score was 118.1 ± 35.7. Lower quality of life was significantly correlated with higher scores on the PSI-SF (r = -0.6), the presence of a developmental issue in the child (r = 0.3) as well as higher scores on the PIP frequency (r = -0.5) and difficulty scales (r = 0.4). Other demographic values for the caregiver and child did not significantly correlate with PSI or PIP total scores. CONCLUSIONS: Anxiety/stress scores of caregivers with children with HLHS are correlated with how well the child is perceived to be doing physically and developmentally by the caregivers. Caregivers with physical and/or developmental concerns may need added psychosocial support.

Prevalence and correlates of posttraumatic stress in parents of young children postburn.

This study examined the prevalence and correlates of posttraumatic stress symptoms (PTSS) in the parents of very young children who sustained a minor to moderate size burn injury. Although prior research has explored this relationship in families of children with major burns, only minimal research has focused on children with minor to moderate injuries. Forty-five parents of young children (<6 years) with a burn injury (mean TBSA = 2.67%, SD = 2.40) completed questionnaires regarding PTSS and demographics at an outpatient burn clinic. Injury-related information was collected from medical records. Parents reported clinically significant levels of PTSS, although in most cases, full diagnostic criteria for posttraumatic stress disorder were not met. The amount of distress was related to the age of the child at burn, child PTSS, and the source of burn. Variables such as size of burn, days spent as inpatient, or parental presence at the time of burn were not found to be related to parental distress. PTSS assessment should be made mandatory for all parents of young children experiencing a burn injury, regardless of size and severity of burn or parental presence at the time of burn.

Caregiver anxiety upon discharge for neonates with congenital heart disease.

INTRODUCTION: Parents of children with congenital heart disease (CHD) have been shown to be at an increased risk of having psychosocial morbidities including anxiety, depression, and somatization. Little is known about the anxiety level of these parents during the initial hospital course. The goal of this study was to evaluate the anxiety level of the parents at the time of hospital discharge and to determine if certain characteristics predict higher anxiety levels. METHODS: Caregivers of neonates admitted with CHD within the first 30 days of life were recruited. Anxiety levels were measured by using the Spielberger State-Trait Anxiety Scale just prior to discharge. Spearman correlations were performed between state and trait scales vs. clinical variables. RESULTS: Fifty-nine questionnaires were completed for 38 neonates. Based on state score measure of anxiety, 81% of parents denied anxiety, 14% reported borderline anxiety, and 5% reported significant anxiety. Trait scores of anxiety reflected 93% of parents who denied anxiety, 2% who reported borderline anxiety, and 5% who reported significant anxiety. There was a significant positive correlation between state score and level of education (ρ= 0.30, P < .05) and the trait score and level of education (ρ= 0.23, P < .10). Number of medications was also significantly negatively associated with standard trait score (ρ=-0.37, P < .05). CONCLUSION: In general, anxiety trait scores were low for caregivers of neonates with CHD; however, there was a higher proportion of caregivers that reported anxiety in the state anxiety score. Higher education was associated with a higher level of anxiety. Future studies are needed to determine how to minimize anxiety levels during this stressful time period.

Attention Deficit/Hyperactivity Disorder and pediatric burn injury: important considerations regarding premorbid risk.

PURPOSE OF REVIEW: The purpose of this review is to provide an overview of the literature on the effects of Attention Deficit/Hyperactivity Disorder on pediatric burn injury, to identify specific considerations and trends relevant to this topic, and to call attention to areas for future research. RECENT FINDINGS: There is growing evidence for increased risk of burn injury in children with Attention Deficit/Hyperactivity Disorder and externalizing behavioral disorders. Research indicates increased risk of burn morbidity and poorer adjustment following burn injury in these patients. Evidence suggests that stimulant treatment may be useful for reducing risk of burn injury and questions the use of 'drug holidays'. Research suggests prevention measures specific to this population, including increased supervision. Primary care providers can further educate patients and families regarding increased risk for injury due to Attention Deficit/Hyperactivity Disorder or symptoms of impulsivity and inattention that accompany other behavioral disorders, neurological conditions, and disabilities. SUMMARY: Information regarding the risk of burn injury in children with symptoms of Attention Deficit/Hyperactivity Disorder is gradually gaining more attention. There is continued need for further investigation in this area, as well as critical assessment of intervention programs for this subgroup of individuals.

Emotional problems and prevalence of medication overuse in pediatric chronic daily headache.

Chronic daily headaches are an increasingly recognized neurologic issue in children. Frequent headaches can be a source of significant disability and family discord with work/school absenteeism. Medication overuse and emotional disorder would significantly impact treatment and progression. This study examined the frequency of emotional and behavioral problems in children and adolescents with chronic daily headache compared with age-related healthy controls. Prevalence of medication overuse in this chronic daily headache group was evaluated. Otherwise healthy children and adolescents with chronic daily headache (according to International Classification of Headache Disorders-II criteria) were enrolled from the Headache Clinic. Healthy controls were prospectively enrolled from physician offices. Multiple psychological rating scales, headache diaries, presence of medication overuse, and disability surveys (Pediatric Migraine Disability Assessment Survey) were completed. A total of 57 healthy controls and 70 patients were studied. The sample consisted largely of females, many of whom (60%) had medication overuse before medical treatment. Headache patients had significantly more symptoms of anxiety, depression, and somatization compared with controls. Patients with chronic daily headache were at higher risk for emotional disorders, and medication overuse was a significant occurrence, suggesting a need for multisystem treatment approach.