To evaluate the distribution of enthesitis and accuracy of physical examination with a dolorimeter for the detection of enthesitis in children, using ultrasound (US) assessment as the reference standard.
We performed a prospective cross-sectional study of 30 enthesitis-related arthritis (ERA) and 30 controls subjects. The following tendon insertion sites were assessed by standardized physical examination with a dolorimeter and US: common extensor on the lateral humerus epicondyle, common flexor on the medial humerus epicondyle, quadriceps at the superior patella, patellar ligament at the inferior patella, Achilles, and plantar fascia at the calcaneus.
Abnormal US findings were detected most commonly at the insertions of the quadriceps (30% [18 of 60 sites]), common extensor (12% [7 of 60]), and Achilles (10% [6 of 60]) tendons. The intrarater reliability of US (kappa) was 0.78 (95% confidence interval [95% CI] 0.63–0.93) and the interrater reliability was 0.81 (95% CI 0.67–0.95). Tenderness as detected by standardized dolorimeter exam had poor positive predictive value for US-confirmed enthesitis. In comparison to controls, ERA patients reported more pain and had lower pain thresholds at every site, including control sites (P <0.01 for all comparisons). The interrater reliability of dolorimeter exam for detection of enthesitis was low (κ = 0.49 [95% CI 0.33–0.65]).
Compared to US, standardized dolorimeter examination for the detection of enthesitis in children has poor accuracy and reliability. The decreased pain threshold of ERA patients likely contributed to the limited accuracy of physical examination. Future research regarding the utility of US for identifying enthesitis at JIA diagnosis, accurately predicting disease progression, and guiding therapeutic decisions is warranted.
To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer.
Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study).
Multicenter study conducted at three children’s hospitals (Boston Children’s Hospital, Children’s Hospital of Philadelphia, Seattle Children’s Hospital).
Parents of children with advanced (progressive, recurrent, or refractory) cancer
Parental PD, as measured by the Kessler-6 (K6) general psychological distress scale.
86 of 104 parents completed the Survey about Caring for Children with Cancer (SCCC, 83% participation); 81 parents had complete K6 data. Over 50% of parents reported high PD and 16% met criteria for serious PD (compared to US prevalence of 2–3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent K6 scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care.
Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals, and easing child suffering and financial hardship may mitigate parental PD.
Children; Cancer; Parental distress; Illness burden; Resilience
The quality of shared decision-making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.
1) Describe the problems and hopes reported by mothers, fathers, and physicians of children receiving palliative care; 2) examine the observed concordance between participants; 3) examine parental perceived agreement; and 4) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left “hopeless”.
71 parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into 8 domains. Observed concordance was calculated between parents and between each parent and the physicians.
The most common problem domains were physical body (88%), quality of life (74%), and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%), and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65–66%) and hope domains (59–63%). Respondents who identified problems regarding a child’s quality of life or suffering were likely to also report corresponding hopes in these domains (93% and 82%, respectively).
Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically-ill children.
pediatric palliative care; parental decision making; concordance; agreement
Better knowledge of patient and cancer treatment factors associated with nausea/vomiting (NV) in pediatric oncology patients could enhance prophylaxis. We aimed to describe such factors in children receiving treatment for acute myeloid leukemia (AML).
Retrospective longitudinal cohort study of 1668 hospitalized children undergoing treatment for AML from the Pediatric Health Information System database (39 hospitals, 1999–2010). Antiemetic alteration, which included switch (a change in prescribed 5-HT3 receptor antagonists) and rescue (receipt of an adjunct antiemetic), were first validated and then used as surrogates of problematic NV. Logistic and negative binomial regression modeling were used to test whether patient characteristics were associated with problematic NV.
Increasing age is associated with greater odds of experiencing antiemetic switch and higher relative rate of antiemetic rescue. Within a treatment cycle, each consecutive inpatient chemotherapy-day decreased the likelihood of requiring antiemetic alteration. Each consecutive inpatient day post-chemotherapy was associated with decreased need for switch, but increased need for rescue. Subsequent cycles of AML therapy were associated with lower odds of antiemetic switch on both chemotherapy and non-chemotherapy days, a lower rate of antiemetic rescue on chemotherapy days, and an increased rate of rescue on non-chemotherapy days.
In pediatric patients with AML, increasing age is strongly associated with greater antiemetic alteration. Antiemetic alteration occurs early in treatment overall, and early within each admission. While additional cycles of therapy are associated with less alteration overall, there is persistent rescue in the days after chemotherapy, suggesting additional etiologies of NV in pediatric cancer patients.
antiemetics; chemotherapy; nausea; supportive care; oncology; pediatrics
Physician empathy is both theoretically and empirically critical to patient health, but research indicates that empathy declines throughout medical school and is lower than ideal among physicians. In this paper, we synthesize the published literature regarding interventions that were quantitatively evaluated to detect changes in empathy among medical students, residents, fellows and physicians.
We systematically searched PubMed, EMBASE, Web of Science and PsychINFO in June of 2014 to identify articles that quantitatively assessed changes in empathy due to interventions among medical students, residents, fellows and physicians.
Of the 1,415 articles identified, 64 met inclusion criteria. We qualitatively synthesized the findings of qualified studies by extracting data for ten study metrics: 1) source population, 2) sample size, 3) control group, 4) random assignment, 5) intervention type, 6) intervention duration, 7) assessment strategy, 8) type of outcome measure, 9) outcome assessment time frame, and 10) whether a statistically significant increase in empathy was reported. Overall, the 64 included studies were characterized by relatively poor research designs, insufficient reporting of intervention procedures, low incidence of patient-report empathy assessment measures, and inadequate evaluations of long-term efficacy. 8 of 10 studies with highly rigorous designs, however, found that targeted interventions did increase empathy.
Physician empathy appears to be an important aspect of patient and physician well-being. Although the current empathy intervention literature is limited by a variety of methodological weaknesses, a sample of high-quality study designs provides initial support for the notion that physician empathy can be enhanced through interventions. Future research should strive to increase the sample of high-quality designs through more randomized, controlled studies with valid measures, explicit reporting of intervention strategies and procedures, and long-term efficacy assessments.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-6920-14-219) contains supplementary material, which is available to authorized users.
Empathy; Compassion emotional intelligence; Undergraduate medical education; Graduate medical education; Continuing medical education; Internship and residency
To describe the relationship between mental health diagnosis and treatment with antipsychotics among U.S. Medicaid-enrolled children over time.
Data Sources/Study Setting
Medicaid Analytic Extract (MAX) files for 50 states and the District of Columbia from 2002 to 2007.
Repeated cross-sectional design. Using logistic regression, outcomes of mental health diagnosis and filled prescriptions for antipsychotics were standardized across demographic and service use characteristics and reported as probabilities across age groups over time.
Center for Medicaid Services data extracted by means of age, ICD-9 codes, service use intensity, and National Drug Classification codes.
Antipsychotic use increased by 62 percent, reaching 354,000 youth by 2007 (2.4 percent). Although youth with bipolar disorder, schizophrenia, and autism proportionally were more likely to receive antipsychotics, youth with attention deficit hyperactivity disorder (ADHD) and those with three or more mental health diagnoses were the largest consumers of antipsychotics over time; by 2007, youth with ADHD accounted for 50 percent of total antipsychotic use; 1 in 7 antipsychotic users were youth with ADHD as their only diagnosis.
In the context of safety concerns, disproportionate antipsychotic use among youth with nonapproved indications illustrates the need for more generalized efficacy data in pediatric populations.
Antipsychotics; mental health; pediatrics; Medicaid
The pediatric complex chronic conditions (CCC) classification system, developed in 2000, requires revision to accommodate the International Classification of Disease 10th Revision (ICD-10). To update the CCC classification system, we incorporated ICD-9 diagnostic codes that had been either omitted or incorrectly specified in the original system, and then translated between ICD-9 and ICD-10 using General Equivalence Mappings (GEMs). We further reviewed all codes in the ICD-9 and ICD-10 systems to include both diagnostic and procedural codes indicative of technology dependence or organ transplantation. We applied the provisional CCC version 2 (v2) system to death certificate information and 2 databases of health utilization, reviewed the resulting CCC classifications, and corrected any misclassifications. Finally, we evaluated performance of the CCC v2 system by assessing: 1) the stability of the system between ICD-9 and ICD-10 codes using data which included both ICD-9 codes and ICD-10 codes; 2) the year-to-year stability before and after ICD-10 implementation; and 3) the proportions of patients classified as having a CCC in both the v1 and v2 systems.
The CCC v2 classification system consists of diagnostic and procedural codes that incorporate a new neonatal CCC category as well as domains of complexity arising from technology dependence or organ transplantation. CCC v2 demonstrated close comparability between ICD-9 and ICD-10 and did not detect significant discontinuity in temporal trends of death in the United States. Compared to the original system, CCC v2 resulted in a 1.0% absolute (10% relative) increase in the number of patients identified as having a CCC in national hospitalization dataset, and a 0.4% absolute (24% relative) increase in a national emergency department dataset.
The updated CCC v2 system is comprehensive and multidimensional, and provides a necessary update to accommodate widespread implementation of ICD-10.
Pediatrics; Complex chronic conditions; Chronic disease; Classification; International classification of disease codes; Comorbidity; Mortality; Health services research
Clinical factors that affect the likelihood of abuse in children with femur fractures have not been well elucidated. Consequently, specifying which children with femur fractures warrant an abuse evaluation is difficult. Therefore the purpose of this study is to estimate the proportion of femur fractures in young children attributable to abuse and to identify demographic, injury and presentation characteristics that affect the probability that femur fractures are secondary to abuse.
We conducted a systematic review of published articles written in English between January 1990 and July 2013 on femur fracture etiology in children less than or equal to 5 years old based on searches in PubMed/MEDLINE and CINAHL databases. Data extraction was based on pre-defined data elements and included study quality indicators. A meta-analysis was not performed due to study population heterogeneity.
Across the 24 studies reviewed, there were a total of 10,717 children less than or equal to 60 months old with femur fractures. Among children less than 12 months old with all types of femur fractures, investigators found abuse rates ranging from 16.7% to 35.2%. Among children 12 months old or greater with femur fractures, abuse rates were lower: from 1.5% - 6.0%. In multiple studies, age less than 12 months, non-ambulatory status, a suspicious history, and the presence of additional injuries were associated with findings of abuse. Diaphyseal fractures were associated with a lower abuse incidence in multiple studies. Fracture side and spiral fracture type, however, were not associated with abuse.
Studies commonly find a high proportion of abuse among children less than 12 months old with femur fractures. The reported trauma history, physical examination findings and radiologic results must be examined for characteristics that increase or decrease the likelihood of abuse determination.
Child abuse; Child maltreatment; Femur fracture; Accident; Trauma
Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling.
Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.
The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.
Parental decision making; Pediatric palliative care; Goals; Disengagement; Reengagement; Regoaling; Positive affect; Negative affect; Hopeful thinking; Conceptual model
Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations where parents typically experience strong emotions.
To explore emotion using both the LIWC and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context.
Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children’s Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semi-structured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the Linguistic Inquiry and Word Count (LIWC) program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders.
Parents who used more positive words when speaking about their children’s illnesses and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: a standard deviation increase in positive emotional expression was associated with an unadjusted 7.6% decrease in self-reported positive affect (P=0.01) and an adjusted 10.0% decrease in self-reported positive affect (P=0.05) after modeling for potential confounders. A standard deviation increase in negative emotional expression was associated with an adjusted 11.3% increase in self-reported negative affect (P=0.04).
The inverse relationship between parents’ positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.
Communication; caregivers; chronic disease management; emotion; palliative care
To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions.
Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children’s Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed.
All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice.
Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.
palliative care; chronic disease; decision-making; hospital care; medical ethics
Test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders.
Prospective cohort study.
Children's hospital and surrounding region.
33 pediatric patients receiving palliative care consult services who did not have LOI orders at time of cohort entry and their 43 parental adults.
Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories
Main Outcome Measures
Enactment of an LOI order after entry into the cohort.
During the 6 months of observation, 14 patients had (42.4%) an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order [AOR 2.73; 95% CI: 1.04, 7.22]. Increased odds of LOI enactment were associated to non-significant degrees with lower levels of parental positive affect [AOR 0.44; 95% CI: 0.17, 1.12], higher levels of parental negative affect [AOR 2.02; 95% CI: 0.98, 4.16], and parental perceptions of worsening health over time [AOR 1.72; 95% CI: 0.73, 4.07].
For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decisionmaking.
This study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA).
The PRQL is a 10-item HRQoL measure with two subscales: physical health and psychological health. The original version of this measure was validated using an Italian-speaking cohort of 472 JIA patients and 796 healthy controls and found to have acceptable psychometric properties. The English language version has not been validated in a US pediatric population. The English PRQL was administered to 161 JIA subjects from a US Rheumatology clinic. We assessed the reliability (internal consistency and test-retest) and validity (convergent, discriminative, and criterion) of the PRQL.
The English PRQL was feasible to administer and demonstrated good psychometric properties. Cronbach alpha (reliability) coefficients ranged from 0.72 to 0.81. Factor analysis yielded the existing subscales. The PRQL total and subscales were found to have moderate correlations with other HRQoL instruments, the Pediatric Quality of Life Inventory (PedsQL) generic core scale and the PedsQL rheumatology. The PRQL discriminated between subjects with active versus inactive disease and was responsive to an improvement or worsening in disease activity over time.
Our results suggest that the English version of the instrument is suitable for use in JIA patients in the US. This tool provides a relatively easy method to integrate at least one patient-reported outcome into routine clinical or research assessment.
Quality of life; Patient-reported outcomes; Pediatric; Juvenile arthritis
To describe variation across selected US children’s hospitals in screening for occult fractures in children <2 years old diagnosed with physical abuse and in infants <1 year old who have injuries associated with a high likelihood of physical abuse.
We performed a retrospective study of children <2 years old with a diagnosis of physical abuse and infants <1 year old with non-motor vehicle crash–associated traumatic brain injuries or femur fractures admitted to 40 hospitals within the Pediatric Hospital Information System database from January 1, 1999, to December 31, 2009. We examined variation among the hospitals in the performance of screening for occult fractures as defined by receipt of skeletal survey or radionuclide bone scan. Marginal standardization implemented with logistic regression analysis was used to examine hospital variation after adjusting for patient demographic characteristics, injury severity, and year of admission.
Screening for occult fractures was performed in 83% of the 10 170 children <2 years old with a diagnosis of physical abuse, 68% of the 9942 infants who had a traumatic brain injury, and 77% of the 2975 infants who had femur fractures. After adjustment for patient characteristics, injury severity, and year of admission, hospitals varied significantly in use of screening for occult fractures in all 3 groups of children.
The observed variation in screening for occult fractures in young victims of physical abuse and infants who have injuries associated with a high likelihood of abuse underscores opportunities to improve the quality of care provided to this vulnerable population.
child abuse; child maltreatment; femur fracture; traumatic brain injury
Acetaminophen overdose is a major concern among the pediatric population. Our objective was to assess the validity of International Classification of Disease (ICD-9-CM) codes for identification of pediatric emergency department (ED) visits resulting from acetaminophen exposure or overdose.
We conducted a retrospective medical record review of ED visits at Texas Children’s Hospital in Houston, Texas, between January 1, 2005, and December 31, 2010. Visits coded with 1 or more ICD-9 codes for poisoning (965, 977, and their subcodes and supplemental E-codes E850, E858, E935, E947, and E950 and their subcodes) were identified from an administrative database, and further review of the medical records was conducted to identify true cases of acetaminophen exposure or overdose. We then examined the sensitivity, positive predictive value, and percentage of false positives identified by various codes and code combinations to establish which codes most accurately identified acetaminophen exposure or overdose.
Of 1,215 ED visits documented with 1 or more of the selected codes, 316 (26.0%) were a result of acetaminophen exposure or overdose. Sensitivity was highest (87.0%) for the combination of codes 965.4 (poisoning by aromatic analgesics, not elsewhere classified) and E950.0 (suicide and self-inflicted poisoning by analgesics, antipyretics, and antirheumatics), with a positive predictive value of 86.2%. Code 965.4 alone yielded a sensitivity of 85.1%, with a positive predictive value of 92.8%. Code performance varied among age groups and depending on the type of exposure (intentional or unintentional).
ICD-9 codes are useful for ascertaining which ED visits are a result of acetaminophen exposure or overdose within the pediatric population. However, because ICD-9 coding differs by age group and depending on the type of exposure, hypothesis-driven strategies must be utilized for each pediatric age group to avoid misclassification.
Acetaminophen; Overdose; Pediatric; Emergency department; Validity
No consensus exists among general pediatricians or pediatric rheumatologists regarding whether corticosteroid therapy ameliorates the acute manifestations of Henoch-Schönlein purpura or mitigates renal injury. Therefore, we sought to synthesize the reported experimental and observational data regarding corticosteroid use.
We performed a meta-analysis based on a comprehensive review of the literature in the Medline database (1956 to January 2007) and the Cochrane Controlled Trials Register. On the basis of reported outcomes among patients with Henoch-Schönlein purpura who were treated at diagnosis with corticosteroids compared with patients treated with supportive care only, we calculated odds ratios for the resolution of abdominal pain, the need for surgical intervention secondary to severe pain or intussusception, the likelihood of Henoch-Schönlein purpura recurrence, and the development of transient or persistent renal disease.
Of 201 articles retrieved from the initial literature search, 15 were eligible for inclusion. Corticosteroid treatment did not reduce the median time to resolution of abdominal pain but did significantly reduce the mean resolution time and increased the odds of resolution within 24 hours. Early corticosteroid treatment significantly reduced the odds of developing persistent renal disease. In addition, although the results were not statistically significant, the prospective data suggest reduced odds of both surgical intervention and recurrence.
Corticosteroids, given early in the course of illness, seem to produce consistent benefits for several major clinically relevant Henoch-Schönlein purpura outcomes.
Henoch-Schönlein purpura; corticosteroids; children; meta-analytic methods; systematic reviews
To characterize the effect of corticosteroid exposure on clinical outcomes in children hospitalized with new-onset Henoch-Schönlein purpura (HSP).
PATIENTS AND METHODS
We conducted a retrospective cohort study of children discharged with an International Classification of Diseases, Clinical Modification code of HSP between 2000 and 2007 by using inpatient administrative data from 36 tertiary care children’s hospitals. We used stratified Cox proportional hazards regression models to estimate the relative effect of time-varying corticosteroid exposure on the risks of clinical outcomes that occur during hospitalization for acute HSP.
During the 8-year study period, there were 1895 hospitalizations for new-onset HSP. After multivariable regression modeling adjustment, early corticosteroid exposure significantly reduced the hazard ratios for abdominal surgery (0.39 [95% confidence interval (CI): 0.17– 0.91]), endoscopy (0.27 [95% CI: 0.13– 0.55]), and abdominal imaging (0.50 [95% CI: 0.29 – 0.88]) during hospitalization.
In the hospital setting, early corticosteroid exposure was associated with benefits for several clinically relevant HSP outcomes, specifically those related to the gastrointestinal manifestations of the disease.
cohort; corticosteroids; adolescents; and epidemiology
Hospitals are being required to report publically their adjusted mortality rates, which are then being used to rank hospitals. Our objectives were to assess the statistical reliability of the determination of a hospital's adjusted mortality rate, of comparisons of that rate with the rates of other hospitals, and of the use of those rates to rank the hospitals.
A cross-sectional study of 473 383 patients discharged from 42 US children's hospitals in 2008 was performed. Hospital-specific observed/expected (O/E) mortality rate ratios and corresponding hospital rankings, with 95% confidence intervals (CIs), were examined.
Hospitals' O/E mortality rate ratios exhibited wide 95% CIs, and no hospital was clearly distinguishable from the other hospitals' aggregated mean mortality performance. Only 2 hospitals' mortality performance fell outside the comparator hospitals' 95% CI. Those hospitals' 95% CIs overlapped with the overall comparator set's 95% CI, which suggests that there were no statistically significant hospital outliers. Fourteen (33.3%) of the 42 hospitals had O/E ratios that were not statistically different from being in the 95% CI of the top 10% of hospitals. Hospital-specific mortality rate rankings displayed even broader 95% CIs; the typical hospital had a 95% CI range that spanned 22 rank-order positions.
Children's hospital-specific measures of adjusted mortality rate ratios and rankings have substantial amounts of statistical imprecision, which limits the usefulness of such measures for comparisons of quality of care.
quality appraisal; quality improvement; mortality rates; hospital performance
The Institute of Medicine has prioritized shared decision making (SDM), yet little is known about the impact of SDM over time on behavioral outcomes for children. This study examined the longitudinal association of SDM with behavioral impairment among children with special health care needs (CSHCN).
CSHCN aged 5-17 years in the 2002-2006 Medical Expenditure Panel Survey were followed for 2 years. The validated Columbia Impairment Scale measured impairment. SDM was measured with 7 items addressing the 4 components of SDM. The main exposures were (1) the mean level of SDM across the 2 study years and (2) the change in SDM over the 2 years. Using linear regression, we measured the association of SDM and behavioral impairment.
Among 2,454 subjects representing 10.2 million CSHCN, SDM increased among 37% of the population, decreased among 36% and remained unchanged among 27%. For CSHCN impaired at baseline, the change in SDM was significant with each 1-point increase in SDM over time associated with a 2-point decrease in impairment (95% CI: 0.5, 3.4), whereas the mean level of SDM was not associated with impairment. In contrast, among those below the impairment threshold, the mean level of SDM was significant with each one point increase in the mean level of SDM associated with a 1.1-point decrease in impairment (0.4, 1.7), but the change was not associated with impairment.
Although the change in SDM may be more important for children with behavioral impairment and the mean level over time for those below the impairment threshold, results suggest that both the change in SDM and the mean level may impact behavioral health for CSHCN.
Children with Special Health Care Needs; Communication; Decision-Making
Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital.
To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units.
A cross-sectional survey of nurses at a freestanding children's hospital in 2005.
Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics.
Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
Early hospital readmission is emerging as an indicator of care quality. Some children with chronic illnesses may be readmitted on a recurrent basis, but there are limited data describing their rehospitalization patterns and impact.
To describe the inpatient resource utilization, clinical characteristics, and admission reasons of patients recurrently readmitted to children’s hospitals.
Design, Setting, and Patients
Retrospective cohort analysis of 317 643 patients (n=579 504 admissions) admitted to 37 US children’s hospitals in 2003 with follow-up through 2008.
Main Outcome Measure
Maximum number of readmissions experienced by each child within any 365-day interval during the 5-year follow-up period.
In the sample, 69 294 patients (21.8%) experienced at least 1 readmission within 365 days of a prior admission. Within a 365-day interval, 9237 patients (2.9%) experienced 4 or more readmissions; time between admissions was a median 37 days (interquartile range [IQR], 21–63). These patients accounted for 18.8% (109 155 admissions) of all admissions and 23.2% ($3.4 billion) of total inpatient charges for the study cohort during the entire follow-up period. Tests for trend indicated that as the number of readmissions increased from 0 to 4 or more, the prevalences increased for a complex chronic condition (from 22.3% [n=55 382/248 349] to 89.0% [n=8225/9237]; P <.001), technology assistance (from 5.3% [n = 13 163] to 52.6% [n=4859]; P <.001), public insurance use (from 40.9% [n = 101 575] to 56.3% [n=5202]; P <.001), and non-Hispanic black race (from 21.8% [n=54 140] to 34.4% [n=3181]; P <.001); and the prevalence decreased for readmissions associated with an ambulatory care–sensitive condition (from 23.1% [62 847/272 065] to 14.0% [15 282/109 155], P<.001). Of patients readmitted 4 or more times in a 365-day interval, 2633 (28.5%) were rehospitalized for a problem in the same organ system across all admissions during the interval.
Among a group of pediatric hospitals, 18.8% of admissions and 23.2% of inpatient charges were accounted for by the 2.9% of patients with frequent recurrent admissions. Many of these patients were rehospitalized recurrently for a problem in the same organ system.
The test characteristics of head circumference (HC) measurement percentile criteria for the identification of previously undetected pathology associated with head enlargement in primary care are unknown.
Electronic patient records were reviewed to identify children age 3 days to 3 years with new diagnoses of intracranial expansive conditions (IEC) and metabolic and genetic conditions associated with macrocephaly (MGCM). We tested the following HC percentile threshold criteria: ever above the 95th, 97th, or 99.6th percentile and ever crossing 2, 4, or 6 increasing major percentile lines. The Centers for Disease Control and World Health Organization growth curves were used, as well as the primary care network (PCN) curves previously derived from this cohort.
Among 74,428 subjects, 85 (0.11%) had a new diagnosis of IEC (n = 56) or MGCM (n = 29), and between these 2 groups, 24 received intervention. The 99.6th percentile of the PCN curve was the only threshold with a PPV over 1% (PPV 1.8%); the sensitivity of this threshold was only 15%. Test characteristics for the 95th percentiles were: sensitivity (CDC: 46%; WHO: 55%; PCN: 40%), positive predictive value (PPV: CDC: 0.3%; WHO: 0.3%; PCN: 0.4%), and likelihood ratios positive (LR+: CDC: 2.8; WHO: 2.2; PCN: 3.9). Test characteristics for the 97th percentiles were: sensitivity (CDC: 40%; WHO: 48%; PCN: 34%), PPV (CDC: 0.4%; WHO: 0.3%; PCN: 0.6%), and LR+ (CDC: 3.6; WHO: 2.7; PCN: 5.6). Test characteristics for crossing 2 increasing major percentile lines were: sensitivity (CDC: 60%; WHO: 40%; PCN: 31%), PPV (CDC: 0.2%; WHO: 0.1%; PCN: 0.2%), and LR+ (CDC: 1.3; WHO: 1.1; PCN: 1.5).
Commonly used HC percentile thresholds had low sensitivity and low positive predictive value for diagnosing new pathology associated with head enlargement in children in a primary care network.
How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described.
Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times. Responses were coded and thematically organized utilizing qualitative data analysis methods. Any discrepancies amongst coders regarding codes or themes were resolved through discussion that reached consensus.
Most parents of children receiving palliative care felt that RSLP was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents, however, did not wish to discuss the topic at all. For those who described their RSLP, their beliefs and practices were associated with qualities of their overall outlook on life, questions of goodness and human capacity, or that “everything happens for a reason.” RSLP was also important in defining the child's value and beliefs about the child's afterlife. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices influenced their perspectives on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt they received support from both their spiritual communities and from God, peace and comfort, and moral guidance. Some parents, however, also reported questioning their faith, feelings of anger and blame towards God, and rejecting religious beliefs or communities.
RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care.