Family-centered care: current applications and future directions in pediatric health care.

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

Measures of ED utilization in a national cohort of children.

OBJECTIVES: Emergency department (ED) utilization is often used as an indicator of poor chronic disease control and/or poor quality of care. We sought to determine if 2 ED utilization measures identify clinically or demographically different populations of children. STUDY DESIGN: Retrospective cohort study utilizing IBM Health/Truven MarketScan Medicaid data. METHODS: Children and adolescents were categorized based on the presence and complexity of chronic medical conditions using the 3M Clinical Risk Group system. Children and adolescents were categorized as high ED utilizers using 2 measures: (1) ED reliance (EDR) (number of ED visits / [number of ED visits + number of ambulatory visits]; EDR >0.33 = high utilizer) and (2) visit counts (≥3 ED visits = high utilizer). Logistic regression models identified patient factors associated with each of our outcome measures. RESULTS: A total of 5,438,541 children and adolescents were included; 65% were without chronic disease (WO-CD), 32% had noncomplex chronic disease (NC-CD), and 3% had complex chronic disease (C-CD). EDR identified 18% as frequent utilizers compared with 7% by the visit count measure. In the visit count model, children younger than 2 years and those classified as WO-CD and NC-CD were less likely to be identified as high utilizers. Conversely, in the EDR model, children and adolescents 2 years and older and those classified as WO-CD and NC-CD were more likely to be classified as high utilizers. CONCLUSIONS: The ED utilization measures identify clinically and demographically different groups of patients. Future studies should consider the medical complexity of the population being studied before choosing the most appropriate measure to employ.

Care management for children with special needs: part I: the role of health plans.

This study documents screening methods and services provided by health plan case managers for high need children in a Washington State health plan. Enrollees were screened to identify 315 children who had or were at risk of developing a chronic condition and were high users of health services. From this group, 46 children/families could be contacted and needed case management. Services included assessment of physical/social needs, patient education, referral to community resources, and benefit utilization. These services were different from care coordination provided in primary care practices.

Care management for children with special needs: Part II: the role of primary care.

This study documents care management services in 2 pediatric clinics for children with or at risk for a chronic condition during 8 months in 2005. Patients were identified by the clinic staff from a list provided by the health plan of patients at risk for or with a chronic condition. Care management services were documented for 161 of 189 selected patients. Services included family support, condition management, medical equipment management, and referrals to specialty care. Pediatric clinical care management activities directly relate to patient care and are complementary to, not duplicative of, case management provided by health plan managers.

Medicaid Expenditures Among Children With Noncomplex Chronic Diseases.

BACKGROUND AND OBJECTIVES: Expenditures for children with noncomplex chronic diseases (NC-CDs) are related to disease chronicity and resource use. The degree to which specific conditions contribute to high health care expenditures among children with NC-CDs is unknown. We sought to describe patient characteristics, expenditures, and use patterns of children with NC-CDs with the lowest (≤80th percentile), moderate (81-95th percentile), high (96-99th percentile), and the highest (≥99th percentile) expenditures. METHODS: In this retrospective cross-sectional study, we used the 2014 Truven Medicaid MarketScan Database for claims from 11 states. We included continuously enrolled children (age <18 years) with NC-CDs (n = 1 563 233). We describe per member per year (PMPY) spending and use by each expenditure group for inpatient services, outpatient services, and the pharmacy for physical and mental health conditions. K-means clustering was used to identify expenditure types for the highest expenditure group. RESULTS: Medicaid PMPY spending ranged from $1466 (lowest expenditures) to $57 300 (highest expenditures; P < .001); children in the highest expenditure group were diagnosed with a mental health condition twice as often (72.7% vs 34.1%). Cluster analysis was used to identify 3 distinct groups: 83% with high outpatient mental health expenditures (n = 13 033; median PMPY $18 814), 15% with high inpatient expenditures (n = 2386; median PMPY $92 950), and 1% with high pharmacy expenditures (n = 213; median $325 412). Mental health conditions accounted for half of the inpatient diagnoses in the cluster analysis. CONCLUSIONS: One percent of children with the highest expenditures accounted for 20% of Medicaid expenditures in children with NC-CDs; mental health conditions account for a large proportion of aggregate Medicaid spending in children with NC-CDs.

Health Care Expenditures and Utilization for Children With Noncomplex Chronic Disease.

BACKGROUND: Pediatric health care expenditures and use vary by level of complexity and chronic illness. We sought to determine expenditures and use for children with noncomplex chronic diseases (NC-CDs). METHODS: We performed a retrospective, cross-sectional analysis of Medicaid enrollees (ages 0-18 years) from January 1, 2012, through December 31, 2013, using administrative claims (the Truven MarketScan Medicaid Database). Patients were categorized by chronicity of illness by using 3M Health Information System's Clinical Risk Groups (CRGs) as follows: without chronic diseases (WO-CDs) (CRG 1-2), NC-CDs (CRG 3-5), and complex chronic diseases (C-CDs) (CRG 6-9). Primary outcomes were medical expenditures, including total annualized population expenditure and per-member per-year expenditure (PMPY). Secondary outcomes included the number of health care encounters over the 2-year period. RESULTS: There were 2 424 946 children who met inclusion criteria, 53% were WO-CD; 36% had an NC-CD; and 11% had a C-CD. Children with NC-CDs accounted for 33% ($2801 PMPY) of the annual spending compared with 20% ($1151 PMPY) accounted for by children WO-CDs and 47% ($12 569 PMPY) by children with C-CDs. The median outpatient visit count by group over the 2-year period was 15 (interquartile range [IQR] 10-25) for NC-CD, 8 (IQR 5-13) WO-CD, and 34 (IQR 19-72) for C-CD. CONCLUSIONS: Children with NC-CDs accounted for 33% of pediatric Medicaid expenditures and have significantly higher PMPY and aggregate annual expenditures than children WO-CDs. The annual aggregate expenditures of the NC-CD group represent a significant societal cost because of the high volume of children, extrapolated to ∼$34.9 billion annually in national Medicaid expenditures.

Using medical billing data to evaluate chronically ill children over time.

This study evaluates stability of chronic condition identification in children older than 4 years in a health plan billing data using Clinical Risk Groups. A total of 31,055 children were continuously enrolled for 4 years; 7.5% (2,334) identified with a chronic condition status in year 1, 2002, and another 15.4% (4,784) during subsequent years; 63.6% (19,759) were identified as "healthy" throughout. The most stable were those identified with a catastrophic health condition. The least stable were those with minor and moderate/dominant major chronic conditions. Overall, 73.1% (1,706) of the children with chronic conditions in year 1 improved in status, and 5.7% (133) progressed to more complex conditions.

Trends in Health Care Spending for Children in Medicaid With High Resource Use.

OBJECTIVES: To assess characteristics associated with health care spending trends among child high resource users in Medicaid. METHODS: This retrospective analysis included 48 743 children ages 1 to 18 years continuously enrolled from 2009-2013 in 10 state Medicaid programs (Truven MarketScan Medicaid Database) also in the top 5% of all health care spending in 2010. Using multivariable regression, associations were assessed between baseline demographic, clinical, and health services characteristics (using 2009-2010 data) with subsequent health care spending (ie, transiently, intermittently, persistently high) from 2011-2013. RESULTS: High spending from 2011-2013 was transient for 54.2%, persistent for 32.9%, and intermittent for 12.9%. Regarding demographic characteristics, the highest likelihood of persistent versus transient spending occurred in children aged 13 to 18 years versus 1 to 2 years in 2010 (odds ratio [OR], 3.0 [95% confidence interval (CI), 2.7-3.4]). Regarding clinical characteristics, the highest likelihoods were in children with ≥6 chronic conditions (OR, 4.8 [95% CI, 3.5-6.6]), a respiratory complex chronic condition (OR, 2.5 [95% CI, 2.2-2.8]), or a neuromuscular complex chronic condition (OR, 2.3 [95% CI, 2.2-2.5]). Hospitalization and emergency department (ED) use in 2010 were associated with a decreased likelihood of persistent spending in 2011-2013 (hospitalization OR, 0.7 [95% CI, 0.7-0.7]); ED OR, 0.8 [95% CI, 0.8-0.8]). CONCLUSIONS: Most children with high spending in Medicaid are without persistently high spending in subsequent years. Adolescent age, multiple chronic conditions, and certain complex chronic conditions increased the likelihood of persistently high spending; hospital and ED use decreased it. These data may help inform the development of new models of care and financing to optimize health and save resources in children with high resource use.

Technology-dependency among patients discharged from a children's hospital: a retrospective cohort study.

BACKGROUND: Advances in medical technology may be increasing the population of children who are technology-dependent (TD). We assessed the proportion of children discharged from a children's hospital who are judged to be TD, and determined the most common devices and number of prescription medications at the time of discharge. METHODS: Chart review of 100 randomly selected patients from all services discharged from a children's hospital during the year 2000. Data were reviewed independently by 4 investigators who classified the cases as TD if the failure or withdrawal of the technology would likely have adverse health consequences sufficient to require hospitalization. Only those cases where 3 or 4 raters agreed were classified as TD. RESULTS: Among the 100 randomly sampled patients, the median age was 7 years (range: 1 day to 24 years old), 52% were male, 86% primarily spoke English, and 54% were privately insured. The median length of stay was 3 days (range: 1 to 103 days). No diagnosis accounted for more than 5% of cases. 41% were deemed to be technology dependent, with 20% dependent upon devices, 32% dependent upon medications, and 11% dependent upon both devices and medications. Devices at the time of discharge included gastrostomy and jejeunostomy tubes (10%), central venous catheters (7%), and tracheotomies (1%). The median number of prescription medications was 2 (range: 0-13), with 12% of cases having 5 or more medications. Home care services were planned for 7% of cases. CONCLUSION: Technology-dependency is common among children discharged from a children's hospital.

Stratification of children by medical complexity.

OBJECTIVE: To stratify children using available software, Clinical Risk Groups (CRGs), in a tertiary children's hospital, Seattle Children's Hospital (SCH), and a state's Medicaid claims data, Washington State (WSM), into 3 condition groups: complex chronic disease (C-CD); noncomplex chronic disease (NC-CD), and nonchronic disease (NC). METHODS: A panel of pediatricians developed consensus definitions for children with C-CD, NC-CD, and NC. Using electronic medical record review and expert consensus, a gold standard population of 700 children was identified and placed into 1 the 3 groups: 350 C-CD, 100 NC-CD, and 250 NC. CRGs v1.9 stratified the 700 children into the condition groups using 3 years of WSM and SCH encounter data (2008-2010). WSM data included encounters/claims for all sites of care. SCH data included only inpatient, emergency department, and day surgery claims. RESULTS: A total of 678 of 700 children identified in SCH data were matched in WSM data. CRGs demonstrated good to excellent specificity in correctly classifying all 3 groups in SCH and WSM data; C-CD in SCH (94.3%) and in WSM (91.1%); NC-CD in SCH (88.2%) and in WSM (83.7%); and NC in SCH (84.9%) and in WSM (94.6%). There was good to excellent sensitivity for C-CD in SCH (75.4%) and in WSM (82.1%) and for NC in SCH (98.4%) and in WSM (81.1%). CRGs demonstrated poor sensitivity for NC-CD in SCH (31.0%) and WSM (58.0%). Reasons for poor sensitivity in NC-CD are explored. CONCLUSIONS: CRGs can be used to stratify children receiving care at a tertiary care hospital according to complexity in both hospital and Medicaid administrative data. This method will enhance reporting of health-related outcome data.

Comparison of Health Care Spending and Utilization Among Children With Medicaid Insurance.

BACKGROUND AND OBJECTIVES: Opportunities to improve health care quality and contain spending may differ between high and low resource users. This study's objectives were to assess health care and spending among children with Medicaid insurance by their resource use. METHODS: Retrospective cross-sectional analysis of 2012 Medicaid health administrative data from 10 states of children ages 11 months to 18 years. Subjects were categorized into 4 spending groups, each representing ∼25% of total spending: the least expensive 80% of children (n = 2,868,267), the next 15% expensive (n = 537,800), the next 4% expensive (n = 143,413), and the top 1% (n = 35,853). We compared per-member-per-month (PMPM) spending across the groups using the Kruskal-Wallis test. RESULTS: PMPM spending was $68 (least expensive 80%), $349 (next 15%), $1200 (next 4%), and $6738 (top 1%). Between the least and most expensive groups, percentages of total spending were higher for inpatient (<1% vs 46%) and mental health (7% vs 24%) but lower for emergency (15% vs 1%) and primary (23% vs 1%) care (all Ps < .001). From the least to most expensive groups, increases in PMPM spending were smallest for primary care (from $15 to $33) and much larger for inpatient ($0.28 to $3129), mental health ($4 to $1609), specialty care ($8 to $768), and pharmacy ($4 to $699). CONCLUSIONS: As resource use increases in children with Medicaid, spending rises unevenly across health services: Spending on primary care rises modestly compared with other health services. Future studies should assess whether more spending on primary care leads to better quality and cost containment for high resource users.

Smallpox vaccination: a review, part I. Background, vaccination technique, normal vaccination and revaccination, and expected normal reactions.

Because smallpox could be a factor in bioterrorism, the United States has provided guidelines for smallpox vaccination of certain members of the population, including health care workers and first responders, as well as military personnel. A plan for more extensive vaccination, if it is needed in the event of a bioterrorist attack, is being developed under the aegis of the Centers for Disease Control and Prevention. The characteristics of smallpox vaccine, the technique of administration, and the expected reactions to primary vaccination and revaccination are outlined in this article.

Smallpox vaccination: a review, part II. Adverse events.

Smallpox vaccination of health care workers, military personnel, and some first responders has begun in the United States in 2002-2003 as one aspect of biopreparedness. Full understanding of the spectrum of adverse events and of their cause, frequency, identification, prevention, and treatment is imperative. This article describes known and suspected adverse events occurring after smallpox vaccination.

Hospital care for children and young adults in the last year of life: a population-based study.

BACKGROUND: To help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died. We also determined the proportion with complex chronic conditions (CCCs) and tested whether the use of hospital services increased as the date of death drew nearer. METHODS: For all deaths occurring under 25 years of age from 1990 to 1996 in Washington State, USA, we linked death certificate information to hospital utilization records and analyzed the timing and duration of hospitalizations and the nature of hospital procedures during the year prior to death. RESULTS: Of the 8 893 deaths, 25 % had CCCs. Among infants with CCCs, 84 % were hospitalized at the time of death and 50 % had been mechanically ventilated during their terminal admission. Among the 458 CCC neonates dying under a week of age, 92% of all days of life were spent in the hospital; among the 172 CCC neonates dying during the second to fourth weeks of life, 85 % of all days of life were spent hospitalized; among the 286 CCC infants dying during the second to twelfth month of life, 41 % of all days of life were spent hospitalized. Among children and young adults with CCCs, 55 % were hospitalized at the time of death, and 19 % had been mechanically ventilated during their terminal admission. For these older patients, the median number of days spent in the hospital during the year preceding death was 18, yet less than a third of this group was hospitalized at any point in time until the last week of their lives. The rate of hospital use increased as death drew near. For subjects who had received hospital care, 44 % had governmental insurance as the source of primary payment. CONCLUSIONS: Infants who died spent a substantial proportion of their lives in hospitals, whereas children and adolescents who died from CCCs predominantly lived outside of the hospital during the last year of life. To serve these patients, pediatric palliative and end-of-life care will have to be provided in an integrated, coordinated manner both in hospitals and home communities.

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

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

Smallpox vaccine: problems and prospects.

Smallpox justifiably is feared because of its morbidity and mortality. Wide-spread population-level susceptibility to smallpox exists, and the only effective tool against the virus is a live, attenuated vaccine that is highly reactogenic and controversial. A significant minority of the population has contraindications that prevent preexposure use of this vaccine. Newer, safer, and equally immunogenic vaccines must be developed and licensed. Several live, attenuated vaccines are in clinical trials. Although these vaccines may prove to be less reactogenic, they still may not be administered safely to a significant portion of the population because they contain live, attenuated viruses. Newer vaccines will be needed if routine preexposure vaccination is to be instituted universally. The idea of a subunit or peptide-based vaccine is appealing, because it obviates potential safety concerns. It may be possible to use a more-attenuated, live vaccine strain for a large segment of the population on a preexposure basis and accept the morbidity and mortality that would result from its use on a postexposure basis, if necessary. The need for widespread population-level protection against variola infection is apparent. The use of the new biology tools to predict or define who might experience serious reactions to the smallpox vaccine and why these reactions occur is an area ripe for additional research. The reason why an individual develops postvaccinal encephalitis remains unknown, and the development is unpredictable and untreatable. In the future, if the mechanism behind such adverse events is defined, it may be possible to screen persons who are likely to experience such events. Although the authors remain proponents for use of the vaccine in alignment with the CDC vaccination program and recommendations, the previous concerns indicate that new knowledge must be gained and shared. Further research on attenuated vaccines and nonliving or peptide vaccines with equal efficacy should remain the goal, as it is apparent that smallpox vaccine once again will become part of the vaccinologist's and public health official's armamentarium in the decades to come.

Profile of medical charges for children by health status group and severity level in a Washington State Health Plan.

OBJECTIVE: To identify children and evaluate patterns of charges for pediatric medical care, by overall health status, severity of illness, and categories of medical service. Data Sources Enrollment, claims, and charges data from a Washington State health plan. The study population includes all children ages 0 to 18 years during calendar year 1999. STUDY DESIGN: Children were classified into clinically defined health status groups and severity levels using Clinical Risk Groups (CRGs). Health plan charges were analyzed according to core health status group, severity level, and category of service. DATA COLLECTION: The three secondary data sources were obtained electronically from the health plan and cleaned for unique members and data quality before analysis. PRINCIPAL FINDINGS: Children classified as healthy (85.2 percent) had mean and median annual charges of dollar 485 and dollar 191. Children with one or more chronic conditions (9.5 percent) had mean and median charges increasing by status and severity group from dollar 2,303 to dollar 76,143 and from dollar 1,151 to dollar 19,456, and accounted for 45.2 percent of all charges. Distribution of charges varied across health status groups. Healthy children had 70.6 percent of their charges in outpatient and physician services. Children classified in the complex, catastrophic, and malignancy groups had 67 percent of their charges in inpatient encounters. Children with chronic conditions accounted for 31.8 percent of all physician, 41.8 percent of outpatient, 47.7 percent of pharmacy, 60.7 percent of inpatient, and 75.8 percent of all other charges. CONCLUSIONS: Children with chronic conditions account for a disproportionately high percentage of children's health expenditures. They account for different percentages of expenses for different medical services. These percentages vary according to health status and severity. This analysis can be used to identify and track groups of children for various purposes.

Identifying and classifying children with chronic conditions using administrative data with the clinical risk group classification system.

OBJECTIVE: To identify and categorize children with chronic health conditions using administrative data. METHODS: The Clinical Risk Groups (CRGs) system is used to classify children, aged 0-18 years, in a mid-sized health plan into mutually exclusive categories and severity groups. Enrollees are categorized into 9 health status groups--healthy, significant acute, and 7 chronic conditions--and are then stratified by severity. Utilization is examined by category and severity level based on eligibility and claims files for calendar year 1999. Only children enrolled for at least 6 months (newborns at least 3 months) are included. RESULTS: This analysis of 34544 children classifies 85.2% as healthy, including 19.6% with no claims; 5.2% with a significant acute illness; 4.6% with a minor chronic condition; and 4.9% with a moderate to catastrophic chronic condition. The average number of unique medical care encounters per child increases by chronic condition category and by severity level. Compared to national prevalence norms for selected conditions, CRGs do well in identifying patients who have conditions that require interaction with the health care system. CONCLUSIONS: CRGs are a useful tool for identifying, classifying, and stratifying children with chronic health conditions. Enrollees can be grouped into categories for patient tracking, case management, and utilization.