Disparities in Patient- and Family-Centered Care During US Children's Health Care Encounters: A Closer Examination



      Patient- and family-centered care (PFCC), which recognizes the family as an integral partner in high-quality clinical decision-making, is important to improving children's health care. Studies examining PFCC disparities in the general US pediatric population, however, are sparse, and use methodology that might mislead readers to overestimate effect sizes because of the high prevalence of high-quality PFCC. We address these issues using improved statistical modeling of conceptually-grounded disparity domains on more recent data.


      This study examined 22,942 children in the 2011 to 2013 Medical Expenditure Panel Surveys (pooled cross-section) with at least 1 health care visit in the previous year (eligible for PFCC questions). We used robust-adjusted multivariable Poisson regression to estimate prevalence rate ratios—closer estimates of true risk ratios of highly prevalent outcomes—of 4 measures of high-quality PFCC and a composite measure.


      Overall, PFCC quality prevalences were high, ranging from 95% to 97% across the 4 PFCC measures with 92% of parents reporting the composite measure. In multivariable analyses, lower prevalence of high-quality PFCC was consistently observed among publicly insured children (relative to the privately insured, prevalence rate ratios ranging from 0.978 to 0.984 across the PFCC measures; 0.962 in the composite) and children living in families below the poverty line (children at ≥400% of the poverty line had 1.018–1.045 times the prevalence of high-quality PFCC across the PFCC measures; 1.056 in the composite).


      Although prevalence rate ratio methodology revealed smaller and perhaps clinically insignificant disparities in US children's PFCC quality than previously portrayed, nonetheless, several statistically significant disparities remain. The most consistent disparities identify those most vulnerable to PFCC quality: publicly insured and impoverished children.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Academic Pediatrics
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Ben-Shlomo Y.
        • Kuh D.
        A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives.
        Int J Epidemiol. 2002; 31: 285-293
        • Gance-Cleveland B.
        Family-centered care. Decreasing health disparities.
        J Spec Pediatr Nurs JSPN. 2006; 11: 72-76
        • Committee on Hospital Care, Institute for Patient- and Family-Centered Care
        Patient- and family-centered care and the pediatrician's role.
        Pediatrics. 2012; 129: 394-404
        • Coker T.R.
        • Rodriguez M.A.
        • Flores G.
        Family-centered care for US children with special health care needs: who gets it and why?.
        Pediatrics. 2010; 125: 1159-1167
        • Litt J.S.
        • McCormick M.C.
        Care coordination, the family-centered medical home, and functional disability among children with special health care needs.
        Acad Pediatr. 2015; 15: 185-190
        • Montes G.
        • Halterman J.S.
        White-black disparities in family-centered care among children with autism in the United States: evidence from the NS-CSHCN 2005-2006.
        Acad Pediatr. 2011; 11: 297-304
        • Guerrero A.D.
        • Chen J.
        • Inkelas M.
        • et al.
        Racial and ethnic disparities in pediatric experiences of family-centered care.
        Med Care. 2010; 48: 388-393
        • Zickafoose J.S.
        • Davis M.M.
        Medical home disparities are not created equal: differences in the medical home for children from different vulnerable groups.
        J Health Care Poor Underserved. 2013; 24: 1331-1343
        • Zickafoose J.S.
        • Gebremariam A.
        • Clark S.J.
        • et al.
        Medical home disparities between children with public and private insurance.
        Acad Pediatr. 2011; 11: 305-310
      1. Agency for Healthcare Research and Quality. MEPS HC-147: 2011 Full Year Consolidated Data File. Available at: Accessed February 15, 2016.

      2. Agency for Healthcare Research and Quality. MEPS HC-155: 2012 Full Year Consolidated Data File. Available at: Accessed February 15, 2016.

      3. Agency for Healthcare Research and Quality. MEPS HC-163: 2013 Full Year Consolidated Data File. Available at: Accessed February 15, 2016.

        • Sternberg S.B.
        • Co J.P.
        • Homer C.J.
        Review of quality measures of the most integrated health care settings for children and the need for improved measures: recommendations for initial core measurement set for CHIPRA.
        Acad Pediatr. 2011; 11: S49-S58.e3
      4. Agency for Healthcare Research and Quality. Patient Experience Measures from the CAHPS Clinician & Group Survey. Available at: Accessed August 3, 2016.

      5. Andersen R. Rice T.H. Kominski G.F. Changing the U.S. Health Care System: Key Issues in Health Services Policy and Management. 3rd ed. Jossey-Bass, San Francisco2007
        • Babitsch B.
        • Gohl D.
        • von Lengerke T.
        Re-revisiting Andersen's Behavioral Model of Health Services Use: a systematic review of studies from 1998-2011.
        Psychosoc Med. 2012; 9 (Doc11)
        • StataCorp
        Stata Statistical Software: Release 14.
        StataCorp LP, College Station, TX2015
        • Lee J.
        Odds ratio or relative risk for cross-sectional data?.
        Int J Epidemiol. 1994; 23: 201-203
        • Zhang J.
        • Yu K.F.
        What's the relative risk?: A method of correcting the odds ratio in cohort studies of common outcomes.
        JAMA. 1998; 280: 1690-1691
        • Barros A.J.
        • Hirakata V.N.
        Alternatives for logistic regression in cross-sectional studies: an empirical comparison of models that directly estimate the prevalence ratio.
        BMC Med Res Methodol. 2003; 3: 21
        • McNutt L.A.
        • Wu C.
        • Xue X.
        • et al.
        Estimating the relative risk in cohort studies and clinical trials of common outcomes.
        Am J Epidemiol. 2003; 157: 940-943
        • Bethell C.D.
        • Kogan M.D.
        • Strickland B.B.
        • et al.
        A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations.
        Acad Pediatr. 2011; 11: S22-S33
        • Wanzer M.B.
        • Booth-Butterfield M.
        • Gruber K.
        Perceptions of health care providers' communication: relationships between patient-centered communication and satisfaction.
        Health Commun. 2004; 16: 363-383
        • Adams E.K.
        • Ketsche P.
        • Zhou M.
        • et al.
        Access and satisfaction among children in Georgia's Medicaid Program and SCHIP: 2000 to 2003.
        Health Care Financ Rev. 2008; 29: 43-57
      6. National Center for Health Statistics. Health, United States, 2011: With Special Feature on Socioeconomic Status and Health. Available at: Accessed December 15, 2013.

        • Devoe J.E.
        • Tillotson C.J.
        • Angier H.
        • et al.
        Recent health insurance trends for US families: children gain while parents lose.
        Matern Child Health J. 2014; 18: 1007-1016
        • Cohen S.B.
        The Medical Expenditure Panel Survey: an overview.
        Eff Clin Pract. 2002; 5: E1
        • Goldhagen J.
        • Remo R.
        • Bryant III, T.
        • et al.
        The health status of southern children: a neglected regional disparity.
        Pediatrics. 2005; 116: e746-e753
        • Braveman P.A.
        • Cubbin C.
        • Egerter S.
        • et al.
        Socioeconomic status in health research: one size does not fit all.
        JAMA. 2005; 294: 2879-2888
        • Petersen D.M.
        • Zickafoose J.
        • Hossain M.
        • et al.
        Physician perspectives on medical home recognition for practice transformation for children.
        Acad Pediatr. 2016; 16: 373-380
      7. Data Resource Center for Child and Adolescent Health. 2011/12 National Survey of Children's Health: Indicator 4.9b: For Those Receiving Care during the Past 12 Months, How Many Children Received Family-Centered Care? Available at: Accessed February 15, 2016.

        • DiAnna Kinder F.
        • Allen L.R.
        Parents' perception of satisfaction with care from pediatric nurse practitioners instrument.
        J Pediatr Health Care. 2014; 28: 128-135
        • Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee
        Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems.
        Pediatrics. 2014; 133: e1451-e1460
        • Paskett E.D.
        • Harrop J.P.
        • Wells K.J.
        Patient navigation: an update on the state of the science.
        CA Cancer J Clin. 2011; 61: 237-249
        • Raphael J.L.
        • Rueda A.
        • Lion K.C.
        • et al.
        The role of lay health workers in pediatric chronic disease: a systematic review.
        Acad Pediatr. 2013; 13: 408-420
        • Craig S.L.
        • Betancourt I.
        • Muskat B.
        Thinking big, supporting families and enabling coping: the value of social work in patient and family centered health care.
        Soc Work Health Care. 2015; 54: 422-443
        • Howell E.M.
        • Kenney G.M.
        The impact of the Medicaid/CHIP expansions on children: a synthesis of the evidence.
        Med Care Res Rev. 2012; 69: 372-396