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1.  Regoaling: a conceptual model of how parents of children with serious illness change medical care goals 
BMC Palliative Care  2014;13:9.
Background
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.
Discussion
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.
Summary
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.
doi:10.1186/1472-684X-13-9
PMCID: PMC3975157  PMID: 24625345
Parental decision making; Pediatric palliative care; Goals; Disengagement; Reengagement; Regoaling; Positive affect; Negative affect; Hopeful thinking; Conceptual model
2.  Putting on a Happy Face: Emotional Expression in Parents of Children with Serious Illness 
Context
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.
Objectives
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.
Methods
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.
Results
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).
Conclusion
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.
doi:10.1016/j.jpainsymman.2012.03.007
PMCID: PMC3510342  PMID: 22926092
Communication; caregivers; chronic disease management; emotion; palliative care
3.  Parental Explicit Heuristics in Decision-making for Children With Life-threatening Illnesses 
Pediatrics  2013;131(2):e566-e572.
OBJECTIVE:
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.
METHODS:
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.
RESULTS:
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.
CONCLUSIONS:
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.
doi:10.1542/peds.2012-1957
PMCID: PMC3557409  PMID: 23319524
palliative care; chronic disease; decision-making; hospital care; medical ethics
4.  Parental Hopeful Patterns of Thinking, Emotions, and Pediatric Palliative Care Decisionmaking: A Prospective Cohort Study 
Archives of pediatrics & adolescent medicine  2010;164(9):10.1001/archpediatrics.2010.146.
Objective
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.
Design
Prospective cohort study.
Setting
Children's hospital and surrounding region.
Participants
33 pediatric patients receiving palliative care consult services who did not have LOI orders at time of cohort entry and their 43 parental adults.
Main Exposures
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.
Results
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].
Conclusions
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.
doi:10.1001/archpediatrics.2010.146
PMCID: PMC3856654  PMID: 20819965
5.  The pediatric rheumatology quality of life scale: validation of the English version in a US cohort of juvenile idiopathic arthritis 
Background
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).
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1546-0096-11-43
PMCID: PMC3830514  PMID: 24206654
Quality of life; Patient-reported outcomes; Pediatric; Juvenile arthritis
6.  Validation of ICD-9-CM codes for identification of acetaminophen-related emergency department visits in a large pediatric hospital 
Background
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.
Methods
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.
Results
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).
Conclusion
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.
doi:10.1186/1472-6963-13-72
PMCID: PMC3585943  PMID: 23433397
Acetaminophen; Overdose; Pediatric; Emergency department; Validity
7.  Effects of Corticosteroid on Henoch-Schönlein Purpura: A Systematic Review 
Pediatrics  2007;120(5):1079-1087.
OBJECTIVE
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.
METHODS
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.
RESULTS
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.
CONCLUSIONS
Corticosteroids, given early in the course of illness, seem to produce consistent benefits for several major clinically relevant Henoch-Schönlein purpura outcomes.
doi:10.1542/peds.2007-0667
PMCID: PMC3525094  PMID: 17974746
Henoch-Schönlein purpura; corticosteroids; children; meta-analytic methods; systematic reviews
8.  Corticosteroids May Improve Clinical Outcomes During Hospitalization for Henoch-Schönlein Purpura 
Pediatrics  2010;126(4):674-681.
OBJECTIVE
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.
RESULTS
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.
CONCLUSIONS
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.
doi:10.1542/peds.2009-3348
PMCID: PMC3518383  PMID: 20855386
cohort; corticosteroids; adolescents; and epidemiology
9.  Statistical Uncertainty of Mortality Rates and Rankings for Children's Hospitals 
Pediatrics  2011;128(4):e966-e972.
OBJECTIVES:
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.
METHODS:
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.
RESULTS:
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.
CONCLUSION:
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.
doi:10.1542/peds.2010-3074
PMCID: PMC3182848  PMID: 21890830
quality appraisal; quality improvement; mortality rates; hospital performance
10.  Shared decision making and behavioral impairment: a national study among children with special health care needs 
BMC Pediatrics  2012;12:153.
Background
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).
Method
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.
Results
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.
Conclusion
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.
doi:10.1186/1471-2431-12-153
PMCID: PMC3470977  PMID: 22998626
Children with Special Health Care Needs; Communication; Decision-Making
12.  Pediatric Nurses' Individual and Group Assessments of Palliative, End-of-Life, and Bereavement Care 
Journal of Palliative Medicine  2011;14(5):631-637.
Abstract
Background
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.
Objective
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.
Method
A cross-sectional survey of nurses at a freestanding children's hospital in 2005.
Results
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.
Conclusions
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.
doi:10.1089/jpm.2010.0409
PMCID: PMC3089742  PMID: 21476885
13.  Hospital Utilization and Characteristics of Patients Experiencing Recurrent Readmissions Within Children’s Hospitals 
Context
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.
Objectives
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.
Results
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.
Conclusions
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.
doi:10.1001/jama.2011.122
PMCID: PMC3118568  PMID: 21325184
14.  The test characteristics of head circumference measurements for pathology associated with head enlargement: a retrospective cohort study 
BMC Pediatrics  2012;12:9.
Background
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.
Methods
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.
Results
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).
Conclusions
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.
doi:10.1186/1471-2431-12-9
PMCID: PMC3331824  PMID: 22269214
15.  How Parents of Children Receiving Pediatric Palliative Care Use Religion, Spirituality, or Life Philosophy in Tough Times 
Journal of Palliative Medicine  2011;14(1):39-44.
Abstract
Background
How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described.
Methods
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.
Results
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.
Conclusions
RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care.
doi:10.1089/jpm.2010.0256
PMCID: PMC3021326  PMID: 21244252
16.  The dynamic system of parental work of care for children with special health care needs: A conceptual model to guide quality improvement efforts 
BMC Pediatrics  2011;11:95.
Background
The work of care for parents of children with complex special health care needs may be increasing, while excessive work demands may erode the quality of care. We sought to summarize knowledge and develop a general conceptual model of the work of care.
Methods
Systematic review of peer-reviewed journal articles that focused on parents of children with special health care needs and addressed factors related to the physical and emotional work of providing care for these children. From the large pool of eligible articles, we selected articles in a randomized sequence, using qualitative techniques to identify the conceptual components of the work of care and their relationship to the family system.
Results
The work of care for a child with special health care needs occurs within a dynamic system that comprises 5 core components: (1) performance of tasks such as monitoring symptoms or administering treatments, (2) the occurrence of various events and the pursuit of valued outcomes regarding the child's physical health, the parent's mental health, or other attributes of the child or family, (3) operating with available resources and within certain constraints (4) over the passage of time, (5) while mentally representing or depicting the ever-changing situation and detecting possible problems and opportunities. These components interact, some with simple cause-effect relationships and others with more complex interdependencies.
Conclusions
The work of care affecting the health of children with special health care needs and their families can best be understood, studied, and managed as a multilevel complex system.
doi:10.1186/1471-2431-11-95
PMCID: PMC3234186  PMID: 22026518
17.  Book Reviews 
Medical History  2011;55(1):223,-149.
PMCID: PMC3037243
18.  Variation in inpatient therapy and diagnostic evaluation of children with Henoch Schönlein purpura 
The Journal of pediatrics  2009;155(6):812-818.e1.
Objective
To describe variation regarding inpatient therapy and evaluation of children with Henoch Schönlein purpura (HSP) admitted to children’s hospitals across the United States.
Study design
We conducted a retrospective cohort study of children discharged with a diagnosis of HSP between 2000 and 2007 using inpatient administrative data from 36 children’s hospitals. We examined variation among hospitals in the use of medications, diagnostic tests, and intensive care services using multivariate mixed effects logistic regression models.
Results
During the initial HSP hospitalization (N=1,988), corticosteroids were the most common medication (56% of cases), followed by opioids (36%), NSAIDs (35%), and anti-hypertensives (11%). After adjustment for patient characteristics, hospitals varied significantly in their use of corticosteroids, opioids, and NSAIDs; the use of diagnostic abdominal imaging, endoscopy, laboratory testing, and renal biopsy; and the utilization of intensive care services. By contrast, hospitals did not differ significantly regarding administration of anti-hypertensives or performance of skin biopsy.
Conclusions
The significant variation identified may contribute to varying HSP clinical outcomes between hospitals, warrants further investigation, and represents a potentially important opportunity to improve quality of care.
doi:10.1016/j.jpeds.2009.05.030
PMCID: PMC2784130  PMID: 19643437
opioids; corticosteroids; anti-hypertensives; non-steroidal anti-inflammatory drugs; adolescents; epidemiology
19.  Children With Complex Chronic Conditions in Inpatient Hospital Settings in the United States 
Pediatrics  2010;126(4):647-655.
OBJECTIVES
Hospitalized children are perceived to be increasingly medically complex, but no such trend has been documented. The objective of this study was to determine whether the proportion of pediatric inpatient use that is attributable to patients with a diagnosis of one or more complex chronic condition (CCC) has increased over time and to assess the degree to which CCC hospitalizations are associated with attributes that are consistent with heightened medical complexity.
METHODS
A retrospective observational study that used the 1997, 2000, 2003, and 2006 Kids Inpatient Databases examined US hospitalizations for children. Attributes of medical complexity included hospital admissions, length of stay, total charges, technology-assistance procedures, and mortality risk.
RESULTS
The proportion of inpatient pediatric admissions, days, and charges increased from 1997 to 2006 for any CCC and for every CCC group except hematology. CCCs accounted for 8.9% of US pediatric admissions in 1997 and 10.1% of admissions in 2006. These admissions used 22.7% to 26.1% of pediatric hospital days, used 37.1% to 40.6% of pediatric hospital charges, accounted for 41.9% to 43.2% of deaths, and (for 2006) used 73% to 92% of different forms of technology-assistance procedures. As the number of CCCs for a given admission increased, all markers of use increased.
CONCLUSIONS
CCC-associated hospitalizations compose an increasing proportion of inpatient care and resource use. Future research should seek to improve methods to identify the population of medically complex children, monitor their increasing inpatient use, and assess whether current systems of care are meeting their needs.
doi:10.1542/peds.2009-3266
PMCID: PMC2962571  PMID: 20855394
child health services; health care delivery/access; health services research; hospitalization; children with special needs
20.  Medicaid’s Role in Financing Health Care for Children With Behavioral Health Care Needs in the Special Education System: Implications of the Deficit Reduction Act 
The Journal of school health  2008;78(10):532-538.
BACKGROUND
Recent changes to Medicaid policy may have unintended consequences in the education system. This study estimated the potential financial impact of the Deficit Reduction Act (DRA) on school districts by calculating Medicaid-reimbursed behavioral health care expenditures for school-aged children in general and children in special education in particular.
METHODS
Medicaid claims and special education records of youth ages 6 to 18 years in Philadelphia, PA, were merged for calendar year 2002. Behavioral health care volume, type, and expenditures were compared between Medicaid-enrolled children receiving and not receiving special education.
RESULTS
Significant overlap existed among the 126,533 children who were either Medicaid enrolled (114,257) or received special education (27,620). Medicaid-reimbursed behavioral health care was used by 21% of children receiving special education (37% of those Medicaid enrolled) and 15% of other Medicaid-enrolled children. Total expenditures were $197.8 million, 40% of which was spent on the 5728 children in special education and 60% of which was spent on 15,092 other children.
CONCLUSIONS
Medicaid-reimbursed behavioral health services disproportionately support special education students, with expenditures equivalent to 4% of Philadelphia’s $2 billion education budget. The results suggest that special education programs depend on Medicaid-reimbursed services, the financing of which the DRA may jeopardize.
doi:10.1111/j.1746-1561.2008.00340.x
PMCID: PMC2880405  PMID: 18808472
Medicaid; special education; mental health; policy; Deficit Reduction Act
21.  State Variation in Psychotropic Medication Use by Foster Care Children With Autism Spectrum Disorder 
Pediatrics  2009;124(2):e305-e312.
OBJECTIVE
The objective of this study was to compare on a national cohort of children with autism spectrum disorder (ASD) the concurrent use of ≥3 psychotropic medications between children in foster care and children who have disabilities and receive Supplemental Security Income, and to describe variation among states in the use of these medications by children in foster care.
METHODS
Studied was the concurrent use of ≥3 classes of psychotropic medications, identified from the 2001 Medicaid claims of 43 406 children who were aged 3 to 18 years and had ≥1 annual claim for ASD. Medicaid enrollment as a child in foster care versus a child with disabilities was compared. Multilevel logistic regression, clustered at the state level and controlling for demographics and comorbidities, yielded standardized (adjusted) estimates of concurrent use of ≥3 medications and estimated variation in medication use within states that exceeded 1 and 2 SDs from the average across states.
RESULTS
Among children in foster care, 20.8% used ≥3 classes of medication concurrently, compared with 10.1% of children who were classified as having a disability. Differences grew in relationship to overall use of medications within a state; for every 5% increase in concurrent use of ≥3 medication classes by a state’s population with disabilities, such use by children in a state’s foster care population increased by 8.3%. Forty-three percent (22) of states were >1 SD from the adjusted mean for children who were using ≥3 medications concurrently, and 14% (7) of the states exceeded 2 SDs.
CONCLUSIONS
Among children with ASD, children in foster care were more likely to use ≥3 medications concurrently than children with disabilities. State-level differences underscore policy or programmatic differences that might affect the receipt of medications in this population.
doi:10.1542/peds.2008-3713
PMCID: PMC2872089  PMID: 19620187
autism; foster care; psychotropic drugs; Medicaid
22.  Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study 
Journal of palliative medicine  2009;12(2):160-169.
Background
The study of how the quality of pediatric end of life care varies across systems of healthcare delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children.
Objective
To develop a prognostication model using administratively available data to predict the probability of in-hospital and 1-year-post-discharge death.
Methods
Retrospective cohort study of 0-21 year old patients admitted to Pennsylvania hospitals from 1994-2001 and followed for 1-year post-discharge mortality, assessing logistic regression models ability to predict in-hospital and 1-year-post-discharge-deaths.
Results
Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred ≤ 365 days after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a c-statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year-post-discharge-deaths exhibited a c-statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint.
Conclusions
Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of healthcare services delivered to children with the highest probability of dying during and after a hospital admission.
doi:10.1089/jpm.2008.0206
PMCID: PMC2656437  PMID: 19207060
23.  Prediction of Pediatric Death in the Year after Hospitalization: A Population-Level Retrospective Cohort Study 
Journal of Palliative Medicine  2009;12(2):160-169.
Abstract
Background
The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children.
Objective
To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death.
Methods
Retrospective cohort study of 0–21 year old patients admitted to Pennsylvania hospitals from 1994–2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths.
Results
Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred 365 days or less after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a C statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year postdischarge deaths exhibited a C statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint.
Conclusions
Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of health care services delivered to children with the highest probability of dying during and after a hospital admission.
doi:10.1089/jpm.2008.0206
PMCID: PMC2656437  PMID: 19207060
24.  How well can hospital readmission be predicted in a cohort of hospitalized children? A retrospective multi-center study 
Pediatrics  2009;123(1):286-293.
Background
Children with complex chronic conditions depend upon both their families and systems of pediatric health care, social services, and financing. Investigations into the workings of this ecology of care would be advanced by more accurate methods of population-level predictions of the likelihood for future hospitalization.
Design
Retrospective cohort study.
Setting
Hospital administrative data collected from 38 children's hospitals in the United States for the years 2003-2005.
Participants
Patients between 2 and 18 years of age discharged from an index hospitalization during 2004.
Main Exposures
Patient characteristics documented during the index hospitalization or any prior hospitalization during the preceding 365 days.
Main Outcome Measures
Readmission to the hospital during the 365 days after discharge from the index admission.
Results
Among the cohort comprised of 186,856 patients discharged from the participating hospitals during 2004, the mean age was 9.2 years, with 54.4% male and 52.9% identified as non-Hispanic white. 17.4% had been admitted during the previous 365 days, and among those discharged alive (0.6% died during the admission), 16.7% were readmitted during the ensuing 365 days. The final readmission model exhibited a C-statistic of 0.81 across all hospitals, with a range from 0.76 to 0.84 for each hospital. Bootstrap-based assessments demonstrated the stability of the final model.
Conclusions
Accurate population-level prediction of hospital readmissions is possible, and the resulting predicted probability of hospital readmission may prove useful for health services research and planning.
doi:10.1542/peds.2007-3395
PMCID: PMC2742316  PMID: 19117894
pediatric; child; chronic conditions; hospital readmission; prediction model; longitudinal observational study
25.  Collaborative Communication in Pediatric Palliative Care: A Foundation for Problem-Solving and Decision-Making 
Summary
In an ideal world, all of us – patients, parents, family members, nurses, physicians, social workers, therapists, pastoral care workers, and others – would always work together in a collaborative manner to provide the best care possible to the patient: this article is committed to this ideal. The chapter will base the frameworks and suggestions in part upon studies of communication between patients, families, and clinicians, as well as more general works on communication, collaboration, decision-making, mediation, and ethics.
This article unfolds in four parts. In Part I, we will explore what we mean by collaborative communication. In Part II, we will examine key concepts that influence how we frame the situations that children with life-threatening conditions confront and how these frameworks shape the care we provide. In Part III, we will consider a few general topics that are quite important to the task of collaborative communication, specifically how we use little “habits of thought”– called heuristics – when we set about to solve complicated problems; how emotion affects the exchange of information between people; and how we can avoid certain pitfalls when engaging in difficult conversations. In Part IV, we will proceed through three common tasks of collaborative communication offering practical advice for patient care.
doi:10.1016/j.pcl.2007.07.008
PMCID: PMC2151773  PMID: 17933613
communication; decisionmaking; end of life

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