Parents' reports of barriers to care for children with special health care needs: development and validation of the barriers to care questionnaire.

OBJECTIVE To describe the development and validation of the Barriers to Care Questionnaire (BCQ). METHODS The 39-item BCQ was developed through review of the literature, focus groups, and cognitive interviews of Spanish- and English-speaking parents of children with chronic health conditions. Barriers to care are conceptualized as a multidimensional construct consisting of pragmatics, health knowledge and beliefs, expectations about care, skills, and marginalization. The BCQ was field tested in 3 samples of children with special health care needs (CSHCN). RESULTS Response rate for the field test was 77.2%. There were minimal missing data (0.08%), no floor effects, and minimal ceiling effects (3.8%, total scale). Internal consistency reliability (alpha) for the BCQ total scale was.95 and subscale alpha ranged from.75 to.91. The BCQ total scale and subscales correlated in the expected direction with validated measures of primary care characteristics and health-related quality of life. BCQ scores were higher (fewer barriers) for children with a primary care physician and for those who reported no problems getting care or foregone care. CONCLUSION The BCQ is a feasible, reliable, and valid instrument for measuring barriers to care for CSHCN. Its use may inform efforts to support consumer choice, enhance provider accountability, and spur quality improvement.

[1]  Rebecca M. Nyman,et al.  Correlates of use of specialty care. , 2004, Pediatrics.

[2]  J. Varni,et al.  The PedsQLTM 4.0 Generic Core Scales: Sensitivity, Responsiveness, and Impact on Clinical Decision-Making , 2002, Journal of Behavioral Medicine.

[3]  X. Badia,et al.  ‘Equivalence’ and the translation and adaptation of health-related quality of life questionnaires , 1997, Quality of Life Research.

[4]  N. Schwarz,et al.  Thinking About Answers: The Application of Cognitive Processes to Survey Methodology , 1995, Quality of Life Research.

[5]  P. Ganz,et al.  Translation and validation of a quality of life instrument for hispanic American cancer patients: methodological considerations , 1995, Quality of Life Research.

[6]  Michael Seid,et al.  The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. , 2003, Ambulatory pediatrics : the official journal of the Ambulatory Pediatric Association.

[7]  J. Varni,et al.  Parents' perceptions of pediatric primary care quality: effects of race/ethnicity, language, and access. , 2003, Health services research.

[8]  A. Green,et al.  Defining Cultural Competence: A Practical Framework for Addressing Racial/Ethnic Disparities in Health and Health Care , 2003, Public health reports.

[9]  E. McGlynn,et al.  The quality of health care delivered to adults in the United States. , 2003, The New England journal of medicine.

[10]  R. Hornung,et al.  Health-related quality of life in urban elementary schoolchildren. , 2003, Pediatrics.

[11]  E. Sobo,et al.  Child health services research : applications, innovations, and insights , 2003 .

[12]  S. Humiston,et al.  Reducing geographic, racial, and ethnic disparities in childhood immunization rates by using reminder/recall interventions in urban primary care practices. , 2002, Pediatrics.

[13]  L. Claudio,et al.  The health of Latino children: urgent priorities, unanswered questions, and a research agenda. , 2002, JAMA.

[14]  J. Varni,et al.  The PedsQL™ in pediatric cancer , 2002, Cancer.

[15]  Dimitri A Christakis,et al.  Continuity of care is associated with high-quality careby parental report. , 2002, Pediatrics.

[16]  J. Varni,et al.  The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. , 2002, Arthritis and rheumatism.

[17]  Kevin Fiscella,et al.  Disparities in Health Care by Race, Ethnicity, and Language Among the Insured: Findings From a National Sample , 2002, Medical care.

[18]  Alastair Baker,et al.  Crossing the Quality Chasm: A New Health System for the 21st Century , 2001, BMJ : British Medical Journal.

[19]  J. Varni,et al.  Parents' Perceptions of Primary Care: measuring parents' experiences of pediatric primary care quality. , 2001, Pediatrics.

[20]  Michael Seid,et al.  PedsQL™ 4.0: Reliability and Validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in Healthy and Patient Populations , 2001, Medical care.

[21]  M. Elliott,et al.  Racial and ethnic differences in parents' assessments of pediatric care in Medicaid managed care. , 2001, Health services research.

[22]  T. Koepsell,et al.  Association of lower continuity of care with greater risk of emergency department use and hospitalization in children. , 2001, Pediatrics.

[23]  C. Eiser,et al.  A review of measures of quality of life for children with chronic illness , 2001, Archives of disease in childhood.

[24]  C. Eiser,et al.  Quality-of-life measures in chronic diseases of childhood. , 2001, Health technology assessment.

[25]  K. Fiscella,et al.  Racial and ethnic disparities in perceptions of physician style and trust. , 2000, Archives of family medicine.

[26]  Ronsaville Ds,et al.  Well child care in the United States : Racial differences in compliance with guidelines , 2000 .

[27]  B. Lanphear,et al.  Barriers to asthma care in urban children: parent perspectives. , 2000, Pediatrics.

[28]  J F Steiner,et al.  Quality of care and use of the medical home in a state-funded capitated primary care plan for low-income children. , 2000, Pediatrics.

[29]  H. Waitzkin,et al.  Patient centeredness in medical encounters requiring an interpreter. , 2000, The American journal of medicine.

[30]  J. Zwanziger,et al.  Evaluation of a state health insurance program for low-income children: implications for state child health insurance programs. , 2000, Pediatrics.

[31]  E. McGlynn,et al.  Quality of Care for Children and Adolescents , 2000 .

[32]  F. Rivara,et al.  Race/ethnicity, gender, socioeconomic status-research exploring their effects on child health: a subject review. , 2000, Pediatrics.

[33]  P. Bearman,et al.  Foregone health care among adolescents. , 1999, JAMA.

[34]  S. Sofaer.  Qualitative methods: what are they and why use them? , 1999, Health services research.

[35]  P. Cleary,et al.  Quality of care at a children's hospital: the parent's perspective. , 1999, Archives of pediatrics & adolescent medicine.

[36]  A. Sandler,et al.  Care Coordination: Integrating Health and Related Systems of Care for Children With Special Health Care Needs , 1999, Pediatrics.

[37]  P. Newacheck,et al.  Enrollment in the State Child Health Insurance Program: a conceptual framework for evaluation and continuous quality improvement. , 1999, The Milbank quarterly.

[38]  T. Koepsell,et al.  Patient-physician racial concordance and the perceived quality and use of health care. , 1999, Archives of internal medicine.

[39]  F. J. Fowler,et al.  The use of cognitive testing to develop and evaluate CAHPS 1.0 core survey items. Consumer Assessment of Health Plans Study. , 1999, Medical care.

[40]  J. Varni,et al.  The PedsQL: measurement model for the pediatric quality of life inventory. , 1999, Medical care.

[41]  E. McGlynn,et al.  How good is the quality of health care in the United States? , 1998, The Milbank quarterly.

[42]  E. McGlynn,et al.  Overview of issues in improving quality of care for children. , 1998, Health services research.

[43]  J E Ware,et al.  The Primary Care Assessment Survey: tests of data quality and measurement performance. , 1998, Medical care.

[44]  R. Blum,et al.  Families' recommendations for improving services for children with chronic conditions. , 1998, Archives of pediatrics & adolescent medicine.

[45]  S. Wade,et al.  Self-reported adherence, management behavior, and barriers to care after an emergency department visit by inner city children with asthma. , 1998, Pediatrics.

[46]  K. Weiss,et al.  Reported difficulties in access to quality care for children with asthma in the inner city. , 1998, Archives of pediatrics & adolescent medicine.

[47]  C. Forrest,et al.  Consumer experiences and provider perceptions of the quality of primary care: implications for managed care. , 1998, The Journal of family practice.

[48]  J J Stoddard,et al.  Health insurance and access to primary care for children. , 1998, The New England journal of medicine.

[49]  L. Snow.  Walkin' Over Medicine , 1998 .

[50]  C. Clancy,et al.  Skepticism toward medical care and health care utilization. , 1998, Medical care.

[51]  S. Cunningham,et al.  Parental perceptions of access to care and quality of care for inner-city children with asthma. , 1998, The Journal of asthma : official journal of the Association for the Care of Asthma.

[52]  G. F. Fisher,et al.  Potentially avoidable hospitalizations: inequalities in rates between US socioeconomic groups. , 1997, American journal of public health.

[53]  E. Sobo,et al.  The cultural context of health, illness, and medicine , 1997 .

[54]  K. Lohr,et al.  Review: Primary Care: America's Health in a New Era , 1997, Annals of Internal Medicine.

[55]  B. Starfield.  Public health and primary care: a framework for proposed linkages. , 1996, American journal of public health.

[56]  Seymour Sudman,et al.  Thinking about Answers: The Application of Cognitive Process to Survey Methodology , 1996 .

[57]  B. Starfield,et al.  Managed care, primary care, and quality for children. , 1996, Current opinion in pediatrics.

[58]  P. Newacheck,et al.  Children's access to primary care: differences by race, income, and insurance status. , 1996, Pediatrics.

[59]  Gary L. Kreps.  Communicating to promote justice in the modern health care system. , 1996, Journal of health communication.

[60]  Seymour Sudman,et al.  Answering Questions: Methodology for Determining Cognitive and Communicative Processes in Survey Research , 1995 .

[61]  T. Koepsell,et al.  Use of health services by African-American children with asthma on Medicaid. , 1995, JAMA.

[62]  J. Ware,et al.  Evaluating Translations of Health Status Questionnaires: Methods From the IQOLA Project , 1995, International Journal of Technology Assessment in Health Care.

[63]  B. Hahn.  Children's health: racial and ethnic differences in the use of prescription medications. , 1995, Pediatrics.

[64]  K. Schulman,et al.  The roles of race and socioeconomic factors in health services research. , 1995, Health services research.

[65]  B. Starfield,et al.  Hospitalizations of Children and Access to Primary Care: A Cross-National Comparison , 1995, International journal of health services : planning, administration, evaluation.

[66]  Randall Brown,et al.  Quality of care for preschool children with asthma: the role of social factors and practice setting. , 1995, Pediatrics.

[67]  R F St Peter,et al.  Health insurance status and ambulatory care for children. , 1994, The New England journal of medicine.

[68]  D. Bender,et al.  The focus group as a tool for health research: issues in design and analysis. , 1994, Health transition review : the cultural, social, and behavioural determinants of health.

[69]  C. Sherbourne,et al.  The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. , 1994 .

[70]  L. Aday,et al.  Health status of vulnerable populations. , 1994, Annual review of public health.

[71]  B. Good.  Medicine, rationality, and experience : an anthropological perspective , 1993 .

[72]  B. Bloom,et al.  Health Insurance and Utilization of Medical Care for Children with Special Health Care Needs , 1993, Medical care.

[73]  W. Hadden,et al.  The increasing disparity in mortality between socioeconomic groups in the United States, 1960 and 1986. , 1993, The New England journal of medicine.

[74]  J. Feinstein,et al.  The relationship between socioeconomic status and health: a review of the literature. , 1993, The Milbank quarterly.

[75]  Lu Ann Aday,et al.  At Risk in America: The Health and Health Care Needs of Vulnerable Populations in the United States , 1993 .

[76]  P. F. Short,et al.  Encouraging Preventive Services for Low-Income Children: The Effect of Expanding Medicaid , 1992, Medical care.

[77]  L. Uba.  Cultural barriers to health care for southeast Asian refugees. , 1992, Public health reports.

[78]  C. Sherbourne,et al.  The MOS 36-Item Short-Form Health Survey (SF-36) , 1992 .

[79]  F. Valentin,et al.  Why does Juan García have a drinking problem? The perspective of critical medical anthropology. , 1992, Medical anthropology.

[80]  E. Fisher,et al.  Geographic barriers to child health services in rural northern New England: 1980 to 1989. , 1992, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[81]  J. Gould,et al.  Socioeconomic differentials and neonatal mortality: racial comparison of California singletons. , 1989, Pediatrics.

[82]  J. Kasper.  The Importance of Type of Usual Source of Care for Children's Physician Access and Expenditures , 1987, Medical care.

[83]  R. Andersen,et al.  A framework for the study of access to medical care. , 1974, Health services research.

[84]  L. Cronbach.  Coefficient alpha and the internal structure of tests , 1951 .