Ambulatory Pediatrics
Volume 4, Issue 4 , Pages 323-331 , July 2004

Parents' Reports of Barriers to Care for Children With Special Health Care Needs: Development and Validation of the Barriers to Care Questionnaire

  • Michael Seid, PhD

      Affiliations

    • Corresponding Author InformationAddress correspondence to Michael Seid, PhD, RAND Corporation, 1700 Main St, Santa Monica, CA 90407
    • ,
  • Elisa J. Sobo, PhD

      Affiliations

    • the Center for Child Health Outcomes, Children's Hospital (Dr Sobo and Ms Gelhard), San Diego, Calif;
    • ,
  • Leticia R. Gelhard, MS

      Affiliations

    • the Center for Child Health Outcomes, Children's Hospital (Dr Sobo and Ms Gelhard), San Diego, Calif;
    • ,
  • James W. Varni, PhD

      Affiliations

    • Department of Landscape Architecture and Urban Planning, College of Architecture; Department of Pediatrics, College of Medicine (Dr Varni), Texas A&M University, College Station, Tex

Received 19 December 2003 ,Accepted 17 March 2004.

REFERENCES 

  1. Reid RJ , Hurtado MP , Starfield B . Managed care, primary care, and quality for children . Curr Opin Pediatr . 1996;8:164–170
  2. Starfield B . Public health and primary care: a framework for proposed linkages . Am J Public Health . 1996;86:1365–1369
  3. Casanova C , Starfield B . Hospitalizations of children and access to primary care: a cross-national comparison . Int J Health Serv . 1995;25:283–294
  4. American Academy of Pediatrics. Committee on Children With Disabilities. . Care coordination: integrating health and related systems of care for children with special health care needs . Pediatrics . 1999;104:978–981
  5. McGlynn EA , Halfon N . Overview of issues in improving quality of care for children . Health Serv Res . 1998;33:977–1000
  6. McGlynn EA , Asch SM , Adams J , et al.   The quality of health care delivered to adults in the United States . N Engl J Med . 2003;348:2635–2645
  7. Institute of Medicine Committee on Quality Health Care in America. . Crossing the Quality Chasm: A New Health System for the 21st Century . Washington, DC: National Academy Press; 2001;
  8. Schuster MA , McGlynn EA , Brook RH . How good is the quality of health care in the United States? . Milbank Q . 1998;76:509; 517-563
  9. Ronsaville DS , Hakim RB . Well child care in the United States: racial differences in compliance with guidelines . Am J Public Health . 2000;90:1436–1443
  10. Welch-Maldonado R , Morales LS , Spritzer K , et al.   Racial and ethnic differences in parents' assessments of pediatric care in Medicaid managed care . Health Serv Res . 2001;36:575–594
  11. Kuhlthau K , Nyman R , Ferris T , et al.   Correlates of use of specialty care . Pediatrics . 2004;113:e249–e255
  12. Fiscella K , Franks P , Doescher MP , Saver BG . Disparities in health care by race, ethnicity, and language among the insured: findings from a national sample . Med Care . 2002;40:52–59
  13. US Department of Health and Human Services. Healthy People 2010 (Conference Edition, in Two Volumes) Washington, DC, January 2000
  14. Seid M , Sobo EJ , Zivkovic M , et al.   Conceptual models of quality of care and health-related quality of life for vulnerable children . In: Sobo EJ , Kurtin PS editor. Child Health Services Research: Applications, Innovation and Insights . San Francisco, Calif: Jossey-Bass; 2003;
  15. Aday L . At Risk in America: The Health and Health Care Needs of Vulnerable Populations in the United States . San Francisco, Calif: Jossey-Bass; 1993;
  16. Aday LA . Health status of vulnerable populations . Annu Rev Public Health . 1994;15:487–509
  17. Aday LA , Andersen R . A framework for the study of access to medical care . Health Serv Res . 1974;9:208–220
  18. Betancourt JR , Green AR , Carrillo JE . Ananeh-Firempong O 2nd Defining cultural competence: a practical framework for addressing racial/ethnic disparities in health and health care . Public Health Rep . 2003;118:293–302
  19. Ngo-Metzger Q , Massagli MP , Clarridge BR , et al.   Linguistic and cultural barriers to care . J Gen Intern Med . 2003;18:44–52
  20. Aday LA , Lee ES , Spears B , et al.   Health insurance and utilization of medical care for children with special health care needs . Med Care . 1993;31:1013–1026
  21. Newacheck PW , Hughes DC , Stoddard JJ . Children's access to primary care: differences by race, income, and insurance status . Pediatrics . 1996;97:26–32
  22. Goodman DC , Barff RA , Fisher ES . Geographic barriers to child health services in rural northern New England: 1980 to 1989 . J Rural Health . 1992;8:106–113
  23. Fiscella K , Franks P , Clancy CM . Skepticism toward medical care and health care utilization . Med Care . 1998;36:180–189
  24. Mansour ME , Lanphear BP , DeWitt TG . Barriers to asthma care in urban children: parent perspectives . Pediatrics . 2000;106:512–519
  25. Sobo E , Seid M . Cultural issues in health services delivery: What kind of “competence” is needed, and from whom? . Ann Behav Sci Med Educ . 2003;9:97–100
  26. Rivadeneyra R , Elderkin-Thompson V , Silver RC , Waitzkin H . Patient centeredness in medical encounters requiring an interpreter . Am J Med . 2000;108:470–474
  27. Saha S , Komaromy M , Koepsell TD , Bindman AB . Patient-physician racial concordance and the perceived quality and use of health care . Arch Intern Med . 1999;159:997–1004
  28. Leickly FE , Wade SL , Crain E , et al.   Self-reported adherence, management behavior, and barriers to care after an emergency department visit by inner city children with asthma . Pediatrics . 1998;101:e8
  29. Schulman KA , Rubenstein LE , Chesley FD , Eisenberg JM . The roles of race and socioeconomic factors in health services research . Health Serv Res . 1995;30:179–195
  30. Committee on Pediatric Research. . Race/ethnicity, gender, socioeconomic status-research exploring their effects on child health: a subject review . Pediatrics . 2000;105:1349–1351
  31. Seid M , Stevens G , Varni J . Parents' perceptions of pediatric primary care quality: Effects of race/ethnicity, language, and access . Health Serv Res . 2003;38:1009–1031
  32. Szilagyi PG , Schaffer S , Shone L , et al.   Reducing geographic, racial, and ethnic disparities in childhood immunization rates by using reminder/recall interventions in urban primary care practices . Pediatrics . 2002;110:e58
  33. Varni JW , Burwinkle TM , Seid M , Skarr D . The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity . Ambul Pediatr . 2003;3:329–341
  34. Mansour ME , Kotagal U , Rose B , et al.   Health-related quality of life in urban elementary schoolchildren . Pediatrics . 2003;111:1372–1381
  35. Stoddard JJ , St Peter RF , Newacheck PW . Health insurance status and ambulatory care for children . N Engl J Med . 1994;330:1421–1425
  36. Newacheck PW , Stoddard JJ , Hughes DC , Pearl M . Health insurance and access to primary care for children . N Engl J Med . 1998;338:513–519
  37. Szilagyi PG , Zwanziger J , Rodewald LE , et al.   Evaluation of a state health insurance program for low-income children: implications for state child health insurance programs . Pediatrics . 2000;105:363–371
  38. Kempe A , Beaty B , Englund BP , et al.   Quality of care and use of the medical home in a state-funded capitated primary care plan for low-income children . Pediatrics . 2000;105:1020–1028
  39. Kasper JD . The importance of type of usual source of care for children's physician access and expenditures . Med Care . 1987;25:386–398
  40. Short PF , Lefkowitz DC . Encouraging preventive services for low-income children. The effect of expanding Medicaid . Med Care . 1992;30:766–780
  41. Ford CA , Bearman PS , Moody J . Foregone health care among adolescents . JAMA . 1999;282:2227–2234
  42. Eiser C , Morse R . Quality-of-life measures in chronic diseases of childhood . Health Technol Assess . 2001;5:1–157
  43. Eiser C , Morse R . A review of measures of quality of life for children with chronic illness . Arch Dis Child . 2001;84:205–211
  44. Varni JW , Seid M , Kurtin PS . PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations . Med Care . 2001;39:800–812
  45. Starfield B , Cassady C , Nanda J , et al.   Consumer experiences and provider perceptions of the quality of primary care: implications for managed care . J Fam Pract . 1998;46:216–226
  46. Safran DG , Kosinski M , Tarlov AR , et al.   The Primary Care Assessment Survey: tests of data quality and measurement performance . Med Care . 1998;36:728–739
  47. Seid M , Varni J , Olson-Bermudez L , et al.   Parent's Perceptions of Primary Care measure (P3C): measuring parents' experiences of pediatric primary care quality . Pediatrics . 2001;108:264–270
  48. McGlynn E , Damberg C , Kerr E , Schuster M . Quality of Care for Children and Adolescents . Santa Monica: RAND; 2000;
  49. Homer CJ , Marino B , Cleary PD , et al.   Quality of care at a children's hospital: the parent's perspective . Arch Pediatr Adolesc Med . 1999;153:1123–1129
  50. Dinkevich EI , Cunningham SJ , Crain EF . Parental perceptions of access to care and quality of care for inner-city children with asthma . J Asthma . 1998;35:63–71
  51. Crain EF , Kercsmar C , Weiss KB , et al.   Reported difficulties in access to quality care for children with asthma in the inner city . Arch Pediatr Adolesc Med . 1998;152:333–339
  52. Garwick AW , Kohrman C , Wolman C , Blum RW . Families' recommendations for improving services for children with chronic conditions . Arch Pediatr Adolesc Med . 1998;152:440–448
  53. Doescher MP , Saver BG , Franks P , Fiscella K . Racial and ethnic disparities in perceptions of physician style and trust . Arch Fam Med . 2000;9:1156–1163
  54. Kreps GL . Communicating to promote justice in the modern health care system . J Health Commun . 1996;1:99–109
  55. Good BJ . Medicine, Rationality, and Experience: An Anthropological Perspective . Cambridge, UK: Cambridge University Press; 1994;
  56. Sudman S , Bradburn NM , Schwarz N . Thinking about Answers: The Application of Cognitive Processes to Survey Methodology . San Francisco, Calif: Jossey-Bass; 1996;
  57. Bender DE , Ewbank D . The focus group as a tool for health research: issues in design and analysis . Health Transit Rev . 1994;4:63–80
  58. Miles M , Huberman AM . Qualitative Data Analysis . 2nd ed.. Thousand Oaks, Cal: Sage; 1994;
  59. Sofaer S . Qualitative methods: what are they and why use them? . Health Serv Res . 1999;34:1101
  60. Sobo E, Seid M, Reyes L. Cultural competence amongst health care consumers: functional biomedical acculturation and the barriers to care questionnaire Paper presented at: 101st Annual Meeting of the American Anthropological Association, invited session; November 23, 2002; New Orleans, La
  61. Canales S , Ganz PA , Coscarelli CA . Translation and validation of a quality of life instrument for Hispanic American cancer patients: methodological considerations . Qual Life Res . 1995;4:3–11
  62. Herdman M , Fox-Rushby J , Badia X . Equivalence and the translation and adaptation of health-related quality of life questionnaires . Qual Life Res . 1997;6:237–247
  63. Ware JE , Keller SD , Grandek B , et al.   Evaluating translations of health status questionnaires: methods from the IQOLA Project . Int J Technol Assess Health Care . 1995;11:525–551
  64. Kincaid J , Fishburne R , Rogers R , Chissom B . Derivation of New Readability Formulas (Automated Reading Index, Fog Count, and Flesch Reading Ease Formula) for Navy Enlisted Personnel . Memphis, Tenn: Naval Air Station; 1975; Research Branch report 8–75
  65. De Maio TJ , Rothgeb JM . Cognitive interviewing techniques . In: Schwarz N , Sudman S editor. Answering Questions: Methodology for Determining Cognitive and Communicative Processes in Survey Research . San Francisco, Calif: Jossey-Bass; 1996;
  66. Harris-Kojetin LD , Fowler FJ , Brown JA , et al.   The use of cognitive testing to develop and evaluate CAHPS 1.0 core survey items. Consumer Assessment of Health Plans Study . Med Care . 1999;37:10–21
  67. Schwarz N , Sudman N . Answering Questions: Methodology for Determining Cognitive and Communicative Processes in Survey Research . San Francisco, Calif: Jossey-Bass; 1996;
  68. Dillman D . Mail and Internet Surveys: The Tailored Design Method . 2nd ed.. New York, NY: Wiley; 2000;
  69. Institute of Medicine. . Primary Care: America's Health in a New Era . Washington, DC: National Academy Press; 1996;
  70. Varni JW , Seid M , Knight TS , et al.   The PedsQL 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making . J Behav Med . 2002;25:175–193
  71. Varni JW , Burwinkle TM , Katz ER , et al.   The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module . Cancer . 2002;94:2090–2106
  72. Varni JW , Seid M , Knight TS , et al.   The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module . Arthritis Rheum . 2002;46:714–725
  73. Varni JW , Seid M , Rode CA . The PedsQL: measurement model for the pediatric quality of life inventory . Med Care . 1999;37:126–139
  74. Agency for Healthcare Research and Quality. CAHPS(tm) 2.0 Questionnaires. . Agency for Healthcare Research and Quality . Available at: http://www.ahrq.gov/qual/cahps/cahpques.htm Accessed April 19, 2004
  75. McHorney CA , Ware JE , Lu JF , Sherbourne CD . The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups . Med Care . 1994;32:40–66
  76. Cronbach LJ . Coefficient alpha and the internal structure of tests . Psychometrika . 1951;16:297–334
  77. Nunnally JC , Bernstein IR . Psychometric Theory . 3rd ed.. New York, NY: McGraw-Hill; 1994;
  78. Cohen J . Statistical Power Analysis for the Behavioral Sciences . 2nd ed.. Hillsdale, NJ: Erlbaum; 1988;
  79. SPSS 11.5.1 for Windows [computer program]. Version . Chicago, Ill: SPSS, Inc.; 2002;
  80. Christakis DA , Wright JA , Zimmerman FJ , et al.   Continuity of care is associated with high-quality care by parental report . Pediatrics . 2002;109:e54
  81. Christakis DA , Mell L , Koepsell TD , et al.   Association of lower continuity of care with greater risk of emergency department use and hospitalization in children . Pediatrics . 2001;107:524–529
  82. Newacheck PW , Stoddard JJ , Hughes DC , Pearl M . Health insurance and access to primary care for children . N Engl J Med . 1998;338:513–519
  83. Hahn BA . Children's health: racial and ethnic differences in the use of prescription medications . Pediatrics . 1995;95:727–732
  84. Lozano P , Connell FA , Koepsell TD . Use of health services by African-American children with asthma on Medicaid . JAMA . 1995;274:469–473
  85. Finkelstein JA , Brown RW , Schneider LC , et al.   Quality of care for preschool children with asthma: the role of social factors and practice setting . Pediatrics . 1995;95:389–394
  86. Feinstein JS . The relationship between socioeconomic status and health: a review of the literature . Milbank Q . 1993;71:279–322
  87. Pappas G , Queen S , Hadden W , Fisher G . The increasing disparity in mortality between socioeconomic groups in the United States, 1960 and 1986 . N Engl J Med . 1993;329:103–109
  88. Pappas G , Hadden WC , Kozak LJ , Fisher GF . Potentially avoidable hospitalizations: inequalities in rates between US socioeconomic groups . Am J Public Health . 1997;87:811–816
  89. Gould JB , Davey B , LeRoy S . Socioeconomic differentials and neonatal mortality: racial comparison of California singletons . Pediatrics . 1989;83:181–186
  90. Halfon N , Inkelas M , Newacheck PW . Enrollment in the State Child Health Insurance Program: a conceptual framework for evaluation and continuous quality improvement . Milbank Q . 1999;77:181–204
  91. Uba L . Cultural barriers to health care for southeast Asian refugees . Public Health Rep . 1992;107:544–548
  92. Flores G , Fuentes-Afflick E , Barbot O , et al.   The health of latino children: urgent priorities, unanswered questions, and a research agenda . JAMA . 2002;288:82–90
  93. Singer M , Valentin F , Baer H , Jia Z . Why does Juan Garcia have a drinking problem? The perspective of critical medical anthropology . Med Anthropol . 1992;14:77–108
  94. Loustaunau M , Sobo EJ . The Cultural Context of Health, Illness and Medicine . Westport, Conn: Bergin & Garvey; 1997;
  95. Snow LF . Walkin' Over Medicine . Boulder, Col: Westview Press; 1993;

PII: S1530-1567(05)60319-X

doi: 10.1367/A03-198R.1

Ambulatory Pediatrics
Volume 4, Issue 4 , Pages 323-331 , July 2004

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