The Hows and Whys of Health Services Research and Costs of Birth ...

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Outline• What is health services research?• Why is health services research important?• Why study costs of birth defects?• Who is collecting health services research data?

Definition of HealthServices Research• Relationship between health service delivery and healthneeds of the population• Applied, multidisciplinary research methods• Includes cost and timeliness of servicesBowling A. Research Methods in health: investigating health and health services. 2 nd edition. Open University Press, Philadelphia, 2002.

Importance of Conducting Health ServicesResearch among Children with Birth DefectsAccess tocarePolicy and programdevelopment andimplementationEducationOutcomesandQuality ofLifeDiagnosis ofconditionSurveillance (e.g.,rates, prevalence,incidence)Referral, treatmentand management

Why Study Costs ofBirth Defects?• Identify problem and resources— Conduct research on causes• Examine attributable costs— Health care— Special education• Assess benefits of prevention— Lifetime costs— Folic acid supplementation• Develop policy

Methods for Conducting HealthService Research for Birth Defects• Use of administrative data only– Hospital discharge data– Health insurance claims data (e.g., MarketScan)• Use of birth defect registries to identify children and linkwith administrative data• Use of parental surveys– National Survey of Children with Special Health CareNeeds– Local studies with state birth defects surveillanceprograms

NBDPN Survey:Preliminary Results• ~35 operational birth defects surveillance programs• 45.7% (n=16) have access to cost or charge data duringfirst year of life• Some states have cost information beyond first year of life• Some states only link to Medicaid or hospital dischargedata for cost or charge information• Very few states have cost information from a HMO orprivate insurance

NBDPN Survey:Preliminary Results• How are cost or charges data used?– Economic analysis• Cost-benefit• Cost-effectiveness– Program planning and justification– Needs assessment– Legislative request

CONCLUDING THOUGHTS

Health Services Research andBirth Defects Registry Data• Birth defects registry data can be a useful tool in health servicesresearch— Identification and referral— Outcomes— Health service needs— Policy development and planning— Costs• Definition of ‘cost’ and cost perspectives• North Carolina Birth Defects Monitoring Program— Active surveillance• Florida Birth Defects Registry— Passive surveillance

Other “Costs” to Consider:• Out-of-pocket costs• Transportation costs• Time spent seeking medical care• Special education and early intervention• Loss of parental earnings— Reduced employment— Reduced wages (rarely estimated)• Loss of personal care, social, and leisure time

Recommendations andResearch Needs• Link with available birth defects registries andadministrative data• Conduct longitudinal studies• Include all payer types: private and public• Examine relationship between insurance statusand access to care and short- and long-termoutcomes• Determine other types of costs• Assess factors related to access to care, timelinessof services and cost

http://www.cdc.gov/dhdsp/programs/nhdsp_program/economic_evaluation/index.htm

Thank you!Special Acknowledgments to:Scott Grosse, Suzanne Gilboa, MargaretHonein, Cara Mai, Cora Peterson,Beth Radcliff, Phoebe Thorpe,Jessica Knight andNBDPN survey respondentsFor more information please contact Centers for Disease Control andPrevention1600 Clifton Road NE, Atlanta, GA 30333Telephone, 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348E-mail: cdcinfo@cdc.gov Web: www.cdc.govThe findings and conclusions in this report are those of the authors and do not necessarily represent the officialposition of the Centers for Disease Control and Prevention.National Center on Birth Defects and Developmental DisabilitiesDivision of Birth Defects and Developmental Disabilities

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