What parents want to know about caring for their preterm infant: A longitudinal descriptive study.

OBJECTIVES: To describe the characteristics of parent knowledge needs and skill acquisition over the course of their infant's neonatal intensive care unit hospitalization. METHODS: 148 parents/guardians of infants ≤33 week gestation enrolled during the usual care phase of a multi-site quasi-experimental study, completing weekly surveys about their learning needs for the coming week and skills learned in the past week. RESULTS: The topics of most interest or concern for parents included feeding their infant and their infant's medical course. Knowledge needs varied by phase of hospitalization (early, middle, late) and by parent age, prior parenting experience, infant gestational age and hospital length of stay. The most common skills learned related to feeding and basic infant care. The number of skills parents reported learning each week varied by parent age, gender, and education. CONCLUSIONS: Parents of preterm infants expressed specific learning needs and acquisition of skills that varied over the course of the hospitalization and by parent and infant characteristics. PRACTICE IMPLICATIONS: The findings can be used to improve parent learning experiences so that they can become full partners in their infant's caregiving and are better prepared to care for their infant after discharge. STUDY REGISTRATION: ClinicalTrials.gov, ID NCT03418870.

High Risk for Severe Emotional Dysregulation in Psychiatrically Referred Youth with Autism Spectrum Disorder: A Controlled Study.

To assess prevalence and severity of emotional dysregulation (ED) in psychiatrically referred youth with autism spectrum disorder (ASD). ASD youth (N = 123) were compared to youth with attention-deficit/hyperactivity disorder (ADHD) and controls. The majority of psychiatrically referred youth with ASD had positive Child Behavior Checklist-ED (CBCL-ED) profile that was significantly higher than in youth with ADHD (82 vs. 53%; p < 0.001). The severe emotional dysregulation (SED) profile was significantly greater in ASD youth than ADHD (44 vs. 15%; p < 0.001). In the presence of SED profile ASD youth suffered from greater severity of autism, associated psychopathology, and psychosocial dysfunction. Greater than expected prevalence of SED in psychiatrically referred youth with ASD that identifies distinct clinical correlates associated with severe morbidity and dysfunction.

Parent-Provider Miscommunications in Hospitalized Children.

BACKGROUND: Miscommunications lead to medical errors and suboptimal hospital experience. Parent-provider miscommunications are understudied. OBJECTIVES: (1) Examine characteristics of parent-provider miscommunications about hospitalized children, (2) describe associations among parent-provider miscommunications, parent-reported errors, and hospital experience, and (3) compare parent and attending physician reports of parent-provider miscommunications. METHODS: Prospective cohort study of 471 parents of 0- to 17-year-old medical inpatients in a pediatric hospital between May 1, 2013 and October 1, 2014. At discharge, parents reported parent-provider miscommunication and type (selecting all applicable responses), overall experience, and errors during hospitalization. During discharge billing, the attending physicians (n = 52) of a subset of patients (n = 217) also reported miscommunications, enabling comparison of parent and attending physician reports. We used logistic regression to examine characteristics of parent-reported miscommunications; McNemar's test to examine associations between miscommunications, errors, and top-box (eg, "excellent") experience; and generalized estimating equations to compare parent- and attending physician-reported miscommunication rates. RESULTS: Parents completed 406 surveys (86.2% response rate). 15.3% of parents (n = 62) reported miscommunications. Parents of patients with nonpublic insurance (odds ratio: 1.99; 95% confidence interval: 1.03-3.85) and longer lengths of stay (odds ratio: 1.12; 95% confidence interval: 1.02-1.23) more commonly reported miscommunications. Parents reporting miscommunications were 5.3 times more likely to report errors and 78.6% less likely to report top-box overall experience (P < .001 for both). Among patients with both parent and attending physician surveys, 16.1% (n = 35) of parents and 3.7% (n = 8) of attending physicians reported miscommunications (P < .001). Both parents and attending physicians attributed miscommunications most often to family receipt of conflicting information. CONCLUSIONS: Parent-provider miscommunications were associated with parent-reported errors and suboptimal hospital experience. Parents reported parent-provider miscommunications more often than attending physicians did.

Symptom Profile of ADHD in Youth With High-Functioning Autism Spectrum Disorder: A Comparative Study in Psychiatrically Referred Populations.

OBJECTIVE: To compare the clinical presentation of ADHD between youth with autism spectrum disorder (ASD) and ADHD and a sample of youth with ADHD only. METHOD: A psychiatrically referred sample of autism spectrum disorder (ASD) youth with ADHD attending a specialized ambulatory program for ASD ( n = 107) and a sample of youth with ADHD attending a general child psychiatry ambulatory clinic ( n = 74) were compared. RESULTS: Seventy-six percent of youth with ASD met Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV) criteria for ADHD. The clinical presentation of ADHD in youth with ASD was predominantly similar to its typical presentation including age at onset (3.5 ± 1.7 vs. 4.0 ± 1.9; p = .12), distribution of diagnostic subtypes, the qualitative and quantitative symptom profile, and symptom severity. Combined subtype was the most frequent presentation of ADHD in ASD youth. CONCLUSION: Despite the robust presentation of ADHD, a significant majority of ASD youth with ADHD failed to receive appropriate ADHD treatment (41% vs. 24%; p = .02). A high rate of comorbidity with ADHD was observed in psychiatrically referred youth with ASD, with a clinical presentation typical of the disorder.

Parent and Provider Experience and Shared Understanding After a Family-Centered Nighttime Communication Intervention.

OBJECTIVE: To assess parent and provider experience and shared understanding after a family-centered, multidisciplinary nighttime communication intervention (nurse-physician brief, family huddle, family update sheet). METHODS: We performed a prospective intervention study at a children's hospital from May 2013 to October 2013 (preintervention period) and May 2014 to October 2014 (postintervention period). Participants included 464 parents, 176 nurses, and 52 resident physicians of 582 hospitalized 0- to 17-year-old patients. Pre- versus postintervention, we compared parent/provider top-box scores (eg, "excellent") for experience with communication across several domains; and level of agreement (shared understanding) between parent, nurse, and resident reports of patients' reason for admission, overnight medical plan, and overall medical plan, as rated independently by blinded clinician reviewers (agreement = 74.7%, kappa = .60). RESULTS: Top-box parent experience improved for 1 of 4 domains: Experience and Communication With Nighttime Doctors (23.6% to 31.5%). Top-box provider experience improved for all 3 domains, including Communication and Shared Understanding With Families (resident rated, 16.5% to 35.1%; nurse rated, 32.2% to 37.9%) and Experience, Communication, and Shared Understanding With Other Providers (resident rated, 20.3% to 35.0%; nurse rated, 14.7% to 21.5%). Independently rated shared understanding remained unchanged for most domains but improved for parent-nurse composite shared understanding (summed agreement for reason for admission, overall plan, and overnight plan; 36.2% to 48.2%) and nurse-resident shared understanding regarding reason for admission (67.1% to 71.2%) and regarding overall medical plan (45.0% to 58.6%). All P <.05. CONCLUSIONS: A family-centered, multidisciplinary nighttime communication intervention was associated with improvements in some, but not all, domains of parent/provider experience and shared understanding, particularly provider experience and nurse-family shared understanding. The intervention was promising but requires further refinement.

Integration and Segregation of Default Mode Network Resting-State Functional Connectivity in Transition-Age Males with High-Functioning Autism Spectrum Disorder: A Proof-of-Concept Study.

The aim of this study is to assess the resting-state functional connectivity (RsFc) profile of the default mode network (DMN) in transition-age males with autism spectrum disorder (ASD). Resting-state blood oxygen level-dependent functional magnetic resonance imaging data were acquired from adolescent and young adult males with high-functioning ASD (n = 15) and from age-, sex-, and intelligence quotient-matched healthy controls (HCs; n = 16). The DMN was examined by assessing the positive and negative RsFc correlations of an average of the literature-based conceptualized major DMN nodes (medial prefrontal cortex [mPFC], posterior cingulate cortex, bilateral angular, and inferior temporal gyrus regions). RsFc data analysis was performed using a seed-driven approach. ASD was characterized by an altered pattern of RsFc in the DMN. The ASD group exhibited a weaker pattern of intra- and extra-DMN-positive and -negative RsFc correlations, respectively. In ASD, the strength of intra-DMN coupling was significantly reduced with the mPFC and the bilateral angular gyrus regions. In addition, the polarity of the extra-DMN correlation with the right hemispheric task-positive regions of fusiform gyrus and supramarginal gyrus was reversed from typically negative to positive in the ASD group. A wide variability was observed in the presentation of the RsFc profile of the DMN in both HC and ASD groups that revealed a distinct pattern of subgrouping using pattern recognition analyses. These findings imply that the functional architecture profile of the DMN is altered in ASD with weaker than expected integration and segregation of DMN RsFc. Future studies with larger sample sizes are warranted.

Families as Partners in Hospital Error and Adverse Event Surveillance.

Importance: Medical errors and adverse events (AEs) are common among hospitalized children. While clinician reports are the foundation of operational hospital safety surveillance and a key component of multifaceted research surveillance, patient and family reports are not routinely gathered. We hypothesized that a novel family-reporting mechanism would improve incident detection. Objective: To compare error and AE rates (1) gathered systematically with vs without family reporting, (2) reported by families vs clinicians, and (3) reported by families vs hospital incident reports. Design, Setting, and Participants: We conducted a prospective cohort study including the parents/caregivers of 989 hospitalized patients 17 years and younger (total 3902 patient-days) and their clinicians from December 2014 to July 2015 in 4 US pediatric centers. Clinician abstractors identified potential errors and AEs by reviewing medical records, hospital incident reports, and clinician reports as well as weekly and discharge Family Safety Interviews (FSIs). Two physicians reviewed and independently categorized all incidents, rating severity and preventability (agreement, 68%-90%; κ, 0.50-0.68). Discordant categorizations were reconciled. Rates were generated using Poisson regression estimated via generalized estimating equations to account for repeated measures on the same patient. Main Outcomes and Measures: Error and AE rates. Results: Overall, 746 parents/caregivers consented for the study. Of these, 717 completed FSIs. Their median (interquartile range) age was 32.5 (26-40) years; 380 (53.0%) were nonwhite, 566 (78.9%) were female, 603 (84.1%) were English speaking, and 380 (53.0%) had attended college. Of 717 parents/caregivers completing FSIs, 185 (25.8%) reported a total of 255 incidents, which were classified as 132 safety concerns (51.8%), 102 nonsafety-related quality concerns (40.0%), and 21 other concerns (8.2%). These included 22 preventable AEs (8.6%), 17 nonharmful medical errors (6.7%), and 11 nonpreventable AEs (4.3%) on the study unit. In total, 179 errors and 113 AEs were identified from all sources. Family reports included 8 otherwise unidentified AEs, including 7 preventable AEs. Error rates with family reporting (45.9 per 1000 patient-days) were 1.2-fold (95% CI, 1.1-1.2) higher than rates without family reporting (39.7 per 1000 patient-days). Adverse event rates with family reporting (28.7 per 1000 patient-days) were 1.1-fold (95% CI, 1.0-1.2; P = .006) higher than rates without (26.1 per 1000 patient-days). Families and clinicians reported similar rates of errors (10.0 vs 12.8 per 1000 patient-days; relative rate, 0.8; 95% CI, .5-1.2) and AEs (8.5 vs 6.2 per 1000 patient-days; relative rate, 1.4; 95% CI, 0.8-2.2). Family-reported error rates were 5.0-fold (95% CI, 1.9-13.0) higher and AE rates 2.9-fold (95% CI, 1.2-6.7) higher than hospital incident report rates. Conclusions and Relevance: Families provide unique information about hospital safety and should be included in hospital safety surveillance in order to facilitate better design and assessment of interventions to improve safety.

Parent-Reported Errors and Adverse Events in Hospitalized Children.

IMPORTANCE: Limited data exist regarding the incidence and nature of patient- and family-reported medical errors, particularly in pediatrics. OBJECTIVE: To determine the frequency with which parents experience patient safety incidents and the proportion of reported incidents that meet standard definitions of medical errors and preventable adverse events (AEs). DESIGN, SETTING, AND PARTICIPANTS: We conducted a prospective cohort study from May 2013 to October 2014 within 2 general pediatric units at a children's hospital. Included in the study were English-speaking parents (N = 471) of randomly selected inpatients (ages 0-17 years) prior to discharge. Parents reported via written survey whether their child experienced any safety incidents during hospitalization. Two physician reviewers classified incidents as medical errors, other quality issues, or exclusions (κ = 0.64; agreement = 78%). They then categorized medical errors as harmful (ie, preventable AEs) or nonharmful (κ = 0.77; agreement = 89%). We analyzed errors/AEs using descriptive statistics and explored predictors of parent-reported errors using bivariate statistics. We subsequently reviewed patient medical records to determine the number of parent-reported errors that were present in the medical record. We obtained demographic/clinical data from hospital administrative records. MAIN OUTCOMES AND MEASURES: Medical errors and preventable AEs. RESULTS: The mean (SD) age of the 383 parents surveyed was 36.6 (8.9) years; most respondents (n = 266) were female. Of 383 parents surveyed (81% response rate), 34 parents (8.9%) reported 37 safety incidents. Among these, 62% (n = 23, 6.0 per 100 admissions) were determined to be medical errors on physician review, 24% (n = 9) were determined to be other quality problems, and 14% (n = 5) were determined to be neither. Thirty percent (n = 7, 1.8 per 100 admissions) of medical errors caused harm (ie, were preventable AEs). On bivariate analysis, children with medical errors appeared to have longer lengths of stay (median [interquartile range], 2.9 days [2.2-6.9] vs 2.5 days [1.9-4.1]; P = .04), more often had a metabolic (14.3% vs 3.0%; P = .04) or neuromuscular (14.3% vs 3.6%; P = .05) condition, and more often had an annual household income greater than $100,000 (38.1% vs 30.1%; P = .06) than those without errors. Fifty-seven percent (n = 13) of parent-reported medical errors were also identified on subsequent medical record review. CONCLUSIONS AND RELEVANCE: Parents frequently reported errors and preventable AEs, many of which were not otherwise documented in the medical record. Families are an underused source of data about errors, particularly preventable AEs. Hospitals may wish to consider incorporating family reports into routine safety surveillance systems.

Communication and Shared Understanding Between Parents and Resident-Physicians at Night.

BACKGROUND AND OBJECTIVE: Communication breakdowns between members of the health care team compromise patient safety and experience. Communication breakdowns with parents, an important but often overlooked part of the health care team, are understudied. Parents may play a particularly important role in nighttime care given decreased staffing and inadequate transitions of care at night. We studied communication breakdowns evidenced by lack of shared understanding between parents and night-team residents about the reason for admission and care plan. METHODS: We conducted a prospective cohort study of parents (n = 286) and night-team senior residents (n = 34) from May 1, 2013 to October 31, 2013. Parents and residents rated communication and described patients' reason for admission, overall plan, and overnight plan. Two physician investigators independently reviewed (κ = 0.63) resident-parent dyads, assigned subsequently dichotomized 4-point overall agreement scores, and rated plan complexity. Using clustered logistic regression, we evaluated relationships among demographics, plan complexity, and shared understanding. We also examined resident and parent perceptions of shared understanding. RESULTS: We analyzed data from 257 parent-resident dyads. Among these, 45.1% were rated as lacking shared understanding (agreement score = 1 or 2). In multivariate analysis, higher plan complexity (P < .001) and length of stay (P = .002) were associated with lack of shared understanding; lower parental education was a borderline predictor (P = .05). When surveyed, parents and residents reported that they shared an understanding with one another about care plans in 86.0% and 73.1% of cases, respectively. CONCLUSIONS: Parents and night-team residents frequently lack shared understanding. Family-centered care initiatives to improve parent-provider communication and shared understanding may help empower parents as partners in safe and high-quality nighttime care.

Physician and Nurse Nighttime Communication and Parents' Hospital Experience.

BACKGROUND AND OBJECTIVE: Night teams of hospital providers have become more common in the wake of resident physician duty hour changes. We sought to examine relationships between nighttime communication and parents' inpatient experience. METHODS: We conducted a prospective cohort study of parents (n = 471) of pediatric inpatients (0-17 years) from May 2013 to October 2014. Parents rated their overall experience, understanding of the medical plan, quality of nighttime doctors' and nurses' communication with them, and quality of nighttime communication between doctors and nurses. We tested the reliability of each of these 5 constructs (Cronbach's α for each >.8). Using logistic regression models, we examined rates and predictors of top-rated hospital experience. RESULTS: Parents completed 398 surveys (84.5% response rate). A total of 42.5% of parents reported a top overall experience construct score. On multivariable analysis, top-rated overall experience scores were associated with higher scores for communication and experience with nighttime doctors (odds ratio [OR] 1.86; 95% confidence interval [CI], 1.12-3.08), for communication and experience with nighttime nurses (OR 6.47; 95% CI, 2.88-14.54), and for nighttime doctor-nurse interaction (OR 2.66; 95% CI, 1.26-5.64) (P < .05 for each). Parents provided the highest percentage of top ratings for the individual item pertaining to whether nurses listened to their concerns (70.5% strongly agreed) and the lowest such ratings for regular communication with nighttime doctors (31.4% excellent). CONCLUSIONS: Parent communication with nighttime providers and parents' perceptions of communication and teamwork between these providers may be important drivers of parent experience. As hospitals seek to improve the patient-centeredness of care, improving nighttime communication and teamwork will be valuable to explore.

Examining the clinical correlates of autism spectrum disorder in youth by ascertainment source.

To examine whether presentation of autism spectrum disorder (ASD) and associated patterns of psychiatric comorbidity and dysfunction vary by referral source. ASD youth referred to a specialized ambulatory program for ASD (N = 143) were compared to ASD youth referred to a general child psychiatry clinic (N = 217). More ASD clinic youth met criteria for a more robust form of ASD (autistic disorder); more youth referred to the psychiatry clinic met criteria for broader spectrum ASD (pervasive developmental disorder not otherwise specified). General psychiatry clinic youth with ASD suffered from a greater burden of psychopathologies and higher levels of dysfunction. The presentation of ASD in psychiatrically referred youth differs between general and ASD-specialized clinics, though both referral populations have high levels of comorbidity and dysfunction.

Examining the comorbidity of bipolar disorder and autism spectrum disorders: a large controlled analysis of phenotypic and familial correlates in a referred population of youth with bipolar I disorder with and without autism spectrum disorders.

OBJECTIVE: Although mood dysregulation is frequently associated with autism spectrum disorders (ASD) and autistic traits are common in youth with bipolar disorder, uncertainties remain regarding the comorbid occurrence of bipolar disorder and ASD. This study examines the clinical and familial correlates of bipolar disorder when it occurs with and without ASD comorbidity in a well-characterized, research-referred population of youth with bipolar disorder. We hypothesized that in youth with bipolar disorder, the clinical and familial correlates of bipolar disorder will be comparable irrespective of the comorbidity with ASD. METHOD: Clinical correlates and familial risk were assessed by secondary analysis of the data from a large family study of youth with bipolar I disorder (diagnosis based on DSM-IV criteria; probands n = 157, relatives n = 487; study period: November 1997-September 2002). Findings in bipolar I youth were compared with those in youth with attention-deficit/hyperactivity disorder (diagnosis based on DSM-III-R criteria) without bipolar I disorder (probands n = 162, relatives n = 511) and age- and sex-matched controls without bipolar I disorder or attention-deficit/hyperactivity disorder (probands n = 136, relatives n = 411). All subjects were comprehensively assessed using structured diagnostic interviews and a wide range of nonoverlapping measures assessing multiple dimensions of functioning. RESULTS: Thirty percent (47/155) of the bipolar I probands met criteria for ASD (diagnosis based on DSM-III-R criteria). The mean ± SD age at onset of bipolar I disorder was significantly earlier in the presence of ASD comorbidity (4.7 ± 2.9 vs 6.3 ± 3.7 years; P = .01). The phenotypic and familial correlates of bipolar disorder were similar in youth with and without ASD comorbidity. CONCLUSIONS: A clinically significant minority of youth with bipolar I disorder suffers from comorbid ASD. Phenotypic and familial correlates of bipolar disorder were typical of the disorder in the presence of ASD comorbidity. Bipolar I disorder comorbidity with ASD represents a very severe psychopathologic state in youth.

A prospective open-label trial of paliperidone monotherapy for the treatment of bipolar spectrum disorders in children and adolescents.

RATIONALE: Treatment studies for the management of pediatric bipolar disorder are limited. OBJECTIVES: This study evaluates the safety and efficacy of paliperidone monotherapy as an acute treatment of mania and related symptoms in youth with bipolar spectrum disorders. METHODS: An 8-week, prospective, open-label paliperidone monotherapy trial to assess effectiveness and tolerability in treating pediatric bipolar spectrum and related disorders (depression, psychosis, attention-deficit/hyperactivity disorder [ADHD]). Assessments included the Young Mania Rating Scale (YMRS), Clinical Global Impression scale (CGI), Children's Depression Rating Scale-Revised (CDRS-R), and Brief Psychiatric Rating Scale (BPRS). Adverse events were assessed through spontaneous self-reports, vital signs, weight monitoring, and laboratory analysis. RESULTS: Fifteen youth with bipolar spectrum disorders (YMRS at entry: 32.8 ± 6.1) were enrolled in the study and 11 (73 %) completed the 8-week trial. The total daily dose of paliperidone at study endpoint was 3 mg in 12 subjects and 6 mg in three subjects. Treatment with paliperidone was associated with statistically significant levels of improvement in mean YMRS scores (-18.7 ± 13.9, p < 0.001) at endpoint. Paliperidone treatment also resulted in significant improvement in the severity of ADHD and psychotic symptoms. Although treatment with paliperidone was generally well tolerated and was not associated with clinically significant change in cardiovascular or metabolic parameters, increases in body weight (4.1 ± 5.5 lb) were substantial. CONCLUSIONS: Open-label paliperidone treatment appears to be beneficial in the treatment of bipolar spectrum disorders and associated conditions in youth. Future placebo-controlled studies are warranted to confirm these findings.

Psychiatric comorbidity and functioning in a clinically referred population of adults with autism spectrum disorders: a comparative study.

To systematically examine the patterns of psychiatric comorbidity and functioning in clinically referred adults with autism spectrum disorders (ASD). Psychiatrically referred adults with and without ASD were compared on measures assessing for psychiatric comorbidity and psychosocial functioning. Sixty-three adults with ASD participated in the study (mean age: 29 ± 11 years). Adults with ASD in their lifetime suffered from a higher burden of psychiatric disorders (6 ± 3.4 vs. 3.5 ± 2.7; p < 0.001) including major depressive disorder and multiple anxiety disorders, and were functionally more impaired with a significant proportion having received both counseling and pharmacotherapy. Adults with ASD have high levels of psychiatric comorbidity and dysfunction comparable to a clinically referred population of adults without ASD.