National Sources of Data About Children and Health
Four sources of data were identified with nationally representative samples of children and their health and included children with CP: National Health and Nutrition Examination Survey (NHANES); National Health Interview Survey (NHIS); National Survey of Child Health (NSCH); and the Early Childhood Longitudinal Study (ECLS) Birth Cohort (B), Kindergarten Cohort (K), and Kindergarten-2011 (K-2011).
NHANES. The NHANES (Table 1A; Supplemental Digital Content [SDC] 1, available at http://links.lww.com/PPT/A142) includes elements that describe population characteristics, health behaviors, and outcomes. It uses both patient-reported and clinical measures. The sample is cross-sectional and collected on an ongoing basis.
NHIS. The NHIS (Table 1B; SDC 2, available at http://links.lww.com/PPT/A143) has data elements that describe environment, population characteristics, health behavior, and outcomes. All NHIS data are self-report. Data elements from the NHIS include physical and mental health status; chronic conditions and disabilities; access to and use of health care services; health insurance coverage; health-related behaviors; functional limitations and immunization; and community characteristics. Physical therapy is grouped with rehabilitation services. The sample is cross-sectional and collected on an ongoing basis.
NSCH. The NSCH (Table 1C; SDC 3, available at http://links.lww.com/PPT/A144) includes information about environment (including neighborhood), population characteristics, health behaviors, and outcomes of children and families. CP is identified as a health condition. The NSCH data are caregiver-reported information about children gathered by telephone interview. The NSCH does not include specific information about physical therapy services but collects data on speech, occupational, and physical therapy as a group.
ECLS-B, K, K-2011. The ECLS (Table 1D; SDC 4, available at http://links.lww.com/PPT/A145) data sources include information about environment, population characteristics, health behaviors, and outcomes. Data are obtained via interviews with teachers, caregivers (including mothers and fathers), day care providers, and the child. Physical, occupational, and speech therapy service utilization is indicated by a yes or no; and amount of therapy received in any given period is not documented. Physical, occupational, and speech therapy goals may be included on educational records that include individualized education plans.
National Data Sources About Children With Special Health Care Needs
Three sources of data were identified with nationally representative samples of children with special health care needs and included children with CP: National Survey of Children with Special Health Care Needs (NS-CSHCN), National Longitudinal Transition Study-2 (NLTS-2), and Autism and Developmental Disabilities Monitoring Network (ADDM).
NS-CSHCN. The NS-CSHCN (Table 1E; SDC 5, available at http://links.lww.com/PPT/A146) includes data elements that describe the environment, population characteristics, health behavior, and outcomes. Data are caregiver-reported information about information about the health and function of children with CSHCN, and caregiver-perceived need and unmet needs for therapy, medical services, and equipment. The NS-CSHCN survey includes diagnostic-specific (CP) and burden of care information along in addition to unmet needs for rehabilitation services. Data are cross-sectional.
NLTS-2. The NLTS-2 (Table 1F; SDC 6, available at http://links.lww.com/PPT/A147) describes environment (school and school program), population characteristics, health behaviors, and outcomes. Data are parent and teacher report and school records, and include information about diagnosis (CP), services received, level of function, comorbidities, and assistive devices.
ADDM. The ADDM (Table 1G; SDC 7, available at http://links.lww.com/PPT/A148) network collects data corresponding to the domains environment (community supports in each state) and population characteristics (gender, comorbidities, and functional level). The network uses active record review from multiple sources to both identify and abstract information for individuals with the condition of concern. Experts review the information to confirm diagnosis (CP) and inclusion. The ADDM network does not include specific information about physical therapy services.
National Data Sources From Hospitals
Four sources of data were identified with nationally representative samples from hospitals that included children with CP: National Ambulatory Medical Care Survey (NAMCS), National Hospital Ambulatory Medical Care Survey (NHAMCS), Medical Expenditure Panel Survey (MEPS), and Kids' Inpatient Database (KID).
NAMCS/NHAMCS. NAMCS/NHAMCS (Tables 1H and I; SDC 8, available at http://links.lww.com/PPT/A149) data elements describe environment, population characteristics, health behaviors, and outcomes. The NAMCS contains information about patient age, gender, medical conditions (CP), insurance type, and physician orders for ancillary services, results of some laboratory tests, equipment, biometrics, and medications. The NAMCS is designed to provide information about the provision and use of ambulatory medical care in the United States, and is based on a randomly selected sample of office-based physicians. The physicians provide data on approximately 30 patient visits during a randomly selected 1-week reporting period. Information is collected on an annual basis and is cross-sectional.
MEPS. The MEPS (Table 1J; SDC 9, available at http://links.lww.com/PPT/A150) includes data on environment, population characteristics, health behaviors, and outcomes. Data are obtained via surveys of families and individuals, as well as their medical providers and employers across the United States, with a focus on insurance coverage and medical cost. Household surveys include items about access to care, alternative or preventative care, physical (including self-reported weight and functional abilities) and mental health conditions (CP), caregivers, illness effect, employment, health status, health insurance and coverage, health care utilization, and satisfaction with health insurance. The cross-sectional survey occurs on an annual basis and is derived from participants in the prior year's NHIS.
The KID. The KID (Table 1K; SDC 10, available at http://links.lww.com/PPT/A151) includes data elements that describe environment, population characteristics, health behavior, and outcomes of children during an inpatient hospital stay. The database includes more than 100 clinical and nonclinical data elements for each hospital stay including primary (CP) and secondary diagnoses and procedures, discharge status, patient demographics (eg, gender, age, race, and median income for zip code), hospital characteristics (eg, ownership, size, teaching status, census region, and division), expected payment source, total charges, length of stay, and severity and comorbidity measures. The KID includes data elements that capture the International Classification of Diseases, Ninth Revision (ICD-9) codes for chronic conditions, such as CP, and also document use of PT services while in the hospital.
Statewide Data Sources From Third-Party Payers
Although multiple sources of data exist on a statewide based from third-party payers, we selected 2 sources with total population samples to describe as exemplars: statewide Medicare Data and statewide data about CSHCN, specifically California Children's Services (CCS).
State Medicaid Data. State Medicaid data (Table 1L; SDC 11, available at http://links.lww.com/PPT/A152) contain information about environment, population characteristics, health behaviors, and outcome. Information about family socioeconomic status, language spoken at home, race, and ethnicity is available. Region of residence and location of services (home or clinic) describe environment. Child health can be identified by diagnosis of an established condition(s) or delay. Physical, occupational, and speech therapy can be distinguished by billing codes. In addition, current procedural terminology codes delineate type of intervention provided, access, amount, and cost.
CCS. In the state of California, the Department of Health Care Services has leveraged county, state, and federal funds to create CCS (Table 1M; SDC 12, available at http://links.lww.com/PPT/A153) to provide care for state residents younger than 21 years. Residents must have medically eligible conditions (eg, CP) and qualify financially.21 Physical, occupational, and medical therapy team meetings and services are provided through a medical therapy program located throughout California counties.21,22 CCS records include information about environment, population characteristics, health behaviors, and outcomes. Information about the child includes demographic characteristics, medical conditions, and use of specialized equipment. Annual outcomes assessed are functional status of the children, utilization of services (frequency, type, and duration), and parent satisfaction.
Hospital or Center-Based Data Sources About CSHCN
Sources of data can be gleaned from hospital or center medical records. As an exemplar, we describe the electronic health record, using Cincinnati Children's Hospital Medical Center (CCHMC).
Electronic Health Record (EHR) at CCHMC. Electronic medical records (EMRs) (Table 1N; SDC 13, available at http://links.lww.com/PPT/A154) are a repository of patient data in digital form, stored and exchanged securely, and accessible by multiple authorized users.23 Studies utilizing EMR frequently report on chronic diseases and take place at larger institutions where significant resources are available. They can be used to study practice patterns, assess outcomes, evaluate quality indicators, and develop effective quality improvement interventions.24 From the perspective of the Anderson model, the EMR contains information corresponding to environment (service delivery models, access, and services received), population characteristics (age, gender, comorbidities, and functional characteristics), health behaviors (service use), and outcomes (eg, pain and function). EMRs allow for a total population sample of children with CP if they are properly identified in the EHR. The sample can be either cross-sectional or longitudinal. Data are only available to qualified researchers at the institution.
DISCUSSION AND CONCLUSION
Secondary data sources reviewed at the federal, state, and local levels contain rich sources of information about children, families, communities, health, development, and outcomes. All data sources contain large numbers of children, necessary for identifying patterns and differences in functional limitations, socioeconomic status, and region of residence. Although many of the data sources discussed in this overview are nationally representative and provide information on individuals with CP, they are not specific to CP.
In many of the sources of data described, the overall number of children with CP in any given sample may preclude multivariate analysis without creating a larger sample of children with motor disability. Obtaining robust sample sizes of children with CP has been a limiting factor in pediatric physical therapy effectiveness research.5 One solution is to combine data across institutions that serve large numbers of individuals with CP. This requires substantial effort to create and sustain the infrastructure needed for multicenter learning health networks.
Exemplar research projects using a practice-based evidence method use networks of clinicians in geographically disparate regions of the United States and Canada who are trained to systematically document services.25,26 These research projects have sources of data from which patterns of outcomes can be associated with child, family, and service utilization characteristics. Developing networks of clinicians who can combine data to evaluate practice patterns is feasible and provides needed information for practice.
There are other barriers to the use of sources of data described in this report. Physical therapy is often grouped with speech and occupational therapy. Important clinical information may not be available (range of motion, tone, or strength) and is needed to differentiate level of severity. Severity is often operationalized in the data sources described by the number of conditions a child has, and functional abilities are often captured by a 5-point Likert scale of difficulty with walking, performing self-care, or getting along with others. Therapy frequency, intensity, time, and type are often not captured. Therapy documentation forms for pediatric physical therapy are available27 and may need to be adapted for different practice settings or EHR platforms.
Other limitations of the sources of data are that few are longitudinal or use an ecological model. Longitudinal data are essential to understanding outcomes of children, as child development is shaped by the interaction of child characteristics with environmental features and service delivery over time. Research supports the importance of the emotional environment of the family to positive long-term outcomes.28,29
Finally, only a few of the sources of data report on caregiver or consumer satisfaction with services. Satisfaction with services is of growing interest to clinicians, program managers, and payers given the paradigm shift to patient-centered services. Unmet needs are measured in a limited number of sources of data, and caregiver perceptions of unmet need are not validated by clinician judgment. We do not know whether perceived unmet needs exist because of lack of education on the part of the consumer, lack of adequate services, or other explanations.
The Affordable Health Care Act, development of clinical practice guidelines, and quality improvement science are driving systems change. Existing sources of data have the potential to inform practice, programs, and policy in pediatric physical therapy for children with CP. Pediatric physical therapists should participate in delineating data elements for children with CP specific to our professional practice and creating multicenter learning networks.
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cerebral palsy; clinical decision-making; health services; physical therapy; registries; United States
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