Pediatric Rehabilitation Services for Children With Cerebral Palsy

S P E C I A L

C O M M U N I C A T I O N

Pediatric Rehabilitation Services for Children With Cerebral Palsy: What Can Existing Data Sources Tell Us? Mary E. Gannotti, PT, PhD; Amy Bailes, PT, PhD, PCS; Kristie Bjornson, PT, PhD, PCS; Maggie O’Neil, PT, PhD, MPH; Marybeth Grant-Buettler, PT, PhD, PCS; Stacey Dusing, PT, PhD University of Hartford (Dr Gannotti), West Hartford, Connecticut; Cincinnati Children’s Hospital Medical Center (Dr Bailes), Cincinnati, Ohio; Seattle Children’s Research Institute (Dr Bjornson), University of Washington, Seattle, Washington; Drexel University (Dr O’Neil), Philadelphia, Pennsylvania; Chapman University (Dr Grant-Buettler), Orange, California; and Virginia Commonwealth University (Dr Dusing), Richmond, Virginia.

Knowledge about associated service utilization patterns and positive outcomes in children with cerebral palsy (CP) of varying levels of severity is a national priority. Families, clinicians, program directors, and policy makers need this information for clinical decision-making and service planning. Existing data sources in the United States that contain information about children with CP, their health, function, well being, and utilization of health services may add to our existing knowledge. We provide a summary of fourteen national, state, and local sources’ data: where the data come from, challenges and/or specific considerations when using or accessing information, and specific data elements included. Currently available sources of data can provide meaningful information for policy, practice, and program development. We propose questions for future inquiry and suggest elements that may be useful for when developing data sources specific to physical therapy and individuals with CP. A physical therapy specific registry is warranted. (Pediatr Phys Ther 2017;29:179–186) Key words: cerebral palsy, clinical decision-making, health services, physical therapy, registries, United States

INTRODUCTION Children with special health care needs are defined as children who use health care services (primary and specialty care, rehabilitation services) and educational and social services at a higher rate than children with typical development.1 Physical therapy (PT) can optimize function and health of children with special health care needs, particularly children and individuals with cerebral palsy (CP).2 Children with CP constitute the most prevalent type of childhood diagnosis with motor disability served by physical therapists. Currently, in the United States, there is no registry or database in which information about the health, function, and well-being of children with CP is system-

0898-5669/292-0179 Pediatric Physical Therapy Copyright © 2017 Wolters Kluwer Health, Inc. and Academy of Pediatric Physical Therapy of the American Physical Therapy Association

Correspondence: Mary E. Gannotti, PT, PhD, Department of Rehabilitation Services, University of Hartford, 200 Bloomfield Ave, West Hartford, CT 06117 ([email protected]). Supplemental digital contents are available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.pedpt.com) The authors declare no conflicts of interest. DOI: 10.1097/PEP.0000000000000377

Pediatric Physical Therapy

atically collected and stored to identify trends and inform physical therapy practice.3 Knowledge about the prevalence of positive outcomes in children with CP of varying levels of severity and associated service utilization patterns is a national priority.4 Families, clinicians, program directors, and policy makers need this information for clinical decision making and service planning for individuals and communities. Pediatric physical therapists, researchers, and members of professional organizations, such as the American Academy of Cerebral Palsy and Developmental Medicine and the Academy of Pediatric Physical Therapy, recognize the need for CP-specific data registries or common data elements with meaningful clinical data and therapy items,3,5 and these organizations are developing solutions to resolve these gaps.6 The purpose of this article is to fill an information gap about existing data sources in the United States that contain information about and have been used to answer questions related to children with CP, their health, function, well-being, and utilization of health services. Although more specialized data sources and common data elements are being developed, access to existing sources of data may provide meaningful information and could promote health services research in the pediatric PT. To evaluate effectiveness of pediatric PT, a study design must account for important moderators and mediators of outcomes7 and the multidimensional nature of providing health services.8 Andersen and colleagues8-10 have developed a conceptual model for examining health service utilization and outcomes. The 4 Cerebral Palsy and Existing Data Sources

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domains of the model include environment, population characteristics, health behaviors, and outcomes. 8 The framework has been used in the United States in studies of children with special health care needs to examine parents’ perspectives on access to rehabilitation services11,12 and is useful for framing studies for children with CP.3 The environment10 includes variables measuring the health system (service delivery models, access, service received) and external environment (community supports and barriers). Population characteristics that influence utilization are considered: predisposing characteristics (age, race, gender), enabling resources (socioeconomic status, insurance), and need (health condition, comorbidities).8 Health behaviors are personal health practices and service utilization. Outcomes included are consumer satisfaction, evaluated health status, and perceived health status. Consumer satisfaction is an important outcome for children with CP, as parent’s satisfaction and experiences with service delivery affect child outcomes such as psychological well-being,13,14 skill development,15 family emotional wellbeing,16,17 and parent’s self-efficacy. Evaluated health is an important outcome for children with CP, as preventing or minimizing secondary conditions is important; for example, excess weight, deformity, pain, poor digestion, and poor cardiovascular capacity.18-20 Perceived health status includes patient-reported activity, participation, and quality of life. Valid and sensitive measures are needed to qualify change in children with CP and have been identified for the domains of Andersen’s model for potential prospective studies.3 Existing large secondary databases that include children with CP can be used for research regarding service use, needs, and effectiveness. A review of existing sources of data that describes assets, challenges, and potential questions for the future may stimulate additional health services research and provide clinicians and administrators with information to guide practice. This article is not a comprehensive listing of all sources of data about children with CP or a systematic review of the literature. It is intended as a resource for clinicians and researchers who may want to access information about children with CP or sources of data. Knowledge about existing sources of data may also provide a framework or insights for clinicians and administrators developing data elements for quality improvement. Using Andersen’s model of health care utilization as a framework, this article has the aims to describe sources of data about children with CP that can inform pediatric physical therapy practice, identify challenges and/or considerations when using these sources, and provide examples of the types of research questions that could be addressed.

nique that examines the entire population, ie, the total population, that has a particular set of characteristics). We purposefully selected sources of data at the national, state, and local levels (Figure 1). Sources of data described from states and treatment centers were limited to the expertise and access of the authors. We searched the Web site of the Department of Health and Human Services, Agency for Health Quality Research, the Centers for Disease Control and Prevention, the Department of Education, and the Centers for Medicare & Medicaid Services to locate federally sponsored sources of data. We used the search engine of the Center for Large Data Research & Data Sharing in Rehabilitation to locate sources of data that included children with CP. We gathered information from web pages, published reports, in-person educational training, webinars, and online learning modules. For some data sources, the authors had permissions to access restricted data or had experience operationalizing research questions with data elements. Each author independently reviewed one or more source of data, and a second author verified the content. Consensus was reached with the group. We reviewed the characteristics of each source of data including individual data elements (eg, items about functional abilities and physical therapy), study design (cross-sectional or longitudinal), availability of the data files for analysis or summary statistics, and challenges or considerations when accessing data sources. We searched PubMed, CINHAL, Google Scholar, and used references from articles or conference proceedings to locate published findings that used the identified data sources to describe the experiences of children with CP. Search terms included the name of the data source and “cerebral palsy” or “children with special health care needs” or “children with disability.” Articles were restricted to those published in the last 10 years and included information about children with CP. Published studies provided examples of research questions answered by data sources. Finally, we generated questions that could be answered in the future.

RESULTS Fourteen sources of data were identified, which include children with CP and 2 or more domains of Andersen’s model (Table 1). Table 1 includes links to each data source. Table 2

METHODS Methods for Identiﬁcation and Description of Data Sources We selected data sources that include children with CP, items that described at least 2 domains from Andersen’s model (environment, population characteristics, health behavior, or outcomes), and had representative sampling (a subset of a statistical population that accurately reflects the members of the entire population and should be an unbiased indication of the population) or total population sampling (a purposive sampling tech180

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Fig. 1. Population samples including children with special health care needs. Pediatric Physical Therapy


TABLE 1 Data Sources Identified as Including Children With Cerebral Palsy National data sources about children and health A. National Health and Nutrition Examination Survey http://www. cdc.gov/nchs/nhanes/ B. National Health Interview Survey http://www.cdc.gov/nchs/nhis/ index.htm C. National Survey of Child Health http://childhealthdata.org/ learn/NSCH D. Early Childhood Longitudinal Study Birth Cohort, Kindergarten Cohort, and Kindergarten-2011 https://nces.ed.gov/ecls/index.asp National data sources about Children With Special Health Care Needs (CSHCN) E. National Survey of CSHCN http://www.childhealthdata.org/ learn/NS-CSHCN F. National Longitudinal Transition Study-2 http://www.nlts2.org/reports/ G. Autism and Developmental Disabilities Monitoring Network https://www.cdc.gov/ncbddd/developmentaldisabilities/MADDSP. html National data sources from hospitals H. National Ambulatory Medical Care Survey http://www.cdc.gov/ nchs/ahcd/about_ahcd.htm I. National Hospital Ambulatory Medical Care Survey http://www. cdc.gov/nchs/ahcd/about_ahcd.htm J. Medical Expenditure Panel Survey https://meps.ahrq.gov/mepsweb/ K. Kids’ Inpatient Database https://www.hcup-us.ahrq.gov/ kidoverview.jsp Statewide data sources from third-party payers L. State Medicare Data http://www.resdac.org/cms-data/search?f[0] =im_field_program_type%3A2 M. Statewide data sources about CSHCN, eg, California Children’s Services http://www.dhcs.ca.gov/services/ccs/Pages/default.aspx Hospital or center-based data sources about CSHCN N. Electronic Medical Records, eg, Cincinnati Children’s Hospital Medical Center https://www.cincinnatichildrens.org/

includes characteristics of the data sources, including the elements that correspond with the domains of Andersen’s model. In the sections next, we provide a summary of the 14 data sources with details provided in the supplemental files.

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 Pediatric Physical Therapy

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 Cerebral Palsy and Existing Data Sources

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CS 5000 individuals

Data type Sample size

No

Yes PR No

No No

No

No

No

Participation measures

Quality of life measures

Service utilization

Service satisfaction Service discipline

Intervention: type, intensity, frequency Adaptive equipment

School services

Service needs

Activity measures

Health measures

No Yes PR, CM Yes PR, CM Yes PR, CM No

Community measures Child characteristics

Yes H

R 0-99 Ongoing

Sampling Age range, y Frequency, y

Family variables Setting

Public restricted All children

Availability Population

National Health and Nutrition Examination Survey

No

No

No

Yes PR Yes PR No No

No

Yes Yes PR Yes PR Yes PR No

CS 35 000 household, 87 500 individuals Yes H

R 0-21 Ongoing


National Health Interview Survey

TABLE 2

Yes PR No

No

No No

Yes Yes PR Yes PR Yes PR Yes PR Yes PR Yes PR No

Yes H

CS 130 000 individuals

R 0-17 Every 2-3 y


National Survey of Child Health

Yes PR Yes PR, CM

Yes Yes PR, CM Yes PR, CM Yes PR Yes PR Yes PR Yes PR, CM Yes PR No Yes PR, CM No

Yes H Community

R Birth to eighth grade Cohorts followed up every 2 y L >14 000 children and their families and teachers


Early Childhood Longitudinal Study

Characteristics of Selected Sources of Data

Yes PR No

No Yes PR Yes PR Yes PR Yes PR Yes PR Yes PR Yes PR No Yes PR No

Yes H

CS 40 000 children

Public restricted Children with special health care needs R 0-17 Every 2-3 y

National Survey of Children With Special Health Care Needs

Yes CM Yes CM No Yes CM Yes CM Yes CM Yes CM

Yes CM Yes CM Yes CM No

Yes Yes

Yes School

L >11 000 individuals

Public restricted Children receiving special education R 13-18 Retired

National Longitudinal Transition Study-2

(continues)

Yes CM No

No Yes CM No

Yes CM No

No

Yes Various community agencies No Yes CM Yes CM Yes CM No

CS >147 000 children 451 children with cerebral palsy

R 8 Retired

Private agency use All children

Autism and Developmental Disabilities Monitoring Network


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R 0-99 Yearly CS ∼15 000 physicians Yes Ambulatory clinic

Characteristics

Availability Population

Sampling Age range, y Frequency, y Data type Sample size

Yes CM No

Service needs

Yes CM No

Yes CM No

Yes CM No

Yes CM No

No No Yes

No Yes CM Yes CM No

Yes Ambulatory

R 0-99 Yearly CS ∼500 000 hospitals


National Hospital Ambulatory Medical Care Survey

Yes

No

No

No

No

No Yes PR Yes PR Yes PR No No Yes PR, CM No

Yes Home community

R 0-99 Yearly CS 15 000 households


Medical Expenditure Panel Survey

CM Yes CM No

Yes CM Yes

No

Yes CM Yes CM No No Yes CM No

No Yes

Yes Inpatient

R 0-21 Every 3 y CS 3 million


Kids’ Inpatient Database

Abbreviations: CM, clinical measures; CS, cross-sectional; H, home; L, longitudinal; PR, patient reported; R, representative; T, total.

School services

Adaptive equipment

Intervention: type, intensity, frequency

Service discipline

Service satisfaction

Yes CM No

No No Yes

Participation measures Quality of life measures Service utilization

Activity measures

Health measure

No Yes CM Yes CM No

Community measures Child characteristics

Family variables Setting

National Ambulatory Care Survey

TABLE 2 Characteristics of Selected Sources of Data (Continued)

No

Yes

Yes

Yes

No

Yes Ambulatory inpatient early intervention No Yes CM Yes CM Yes CM No No Yes CM No

T 0-21 Ongoing Longitudinal Variable

Restricted All children

State Medicaid

CM Yes CM No

Yes Yes PR, CM Yes PR Yes CM No No Yes CM Yes CM Yes PR Yes CM Yes

No Ambulatory

Private agency use Children with special health care needs T 0-21 Ongoing Longitudinal 22 500 children

California Children’s Services

No

CM No

Yes CM Yes

No

No No Yes CM No

No

No Yes CM No

Yes Ambulatory

T 0-99 1y CS 425 children

Private agency use Children with cerebral palsy

Electronic Health Records—Cincinnati Children’s Hospital Medical Center

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.

ulation 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.

Statewide Data Sources From Third-Party Payers

DISCUSSION AND CONCLUSION

Although multiple sources of data exist on a statewide based from third-party payers, we selected 2 sources with total pop-

Secondary data sources reviewed at the federal, state, and local levels contain rich sources of information about children,

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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 Pediatric Physical Therapy

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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