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 (a) 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.