TABLE 1.

Estimated Proportion of Children Who Met the Core Outcomes: United States, 2001

CriteriaValid Cases (CSHCN)*Valid Cases (All Children)Cases With Missing Data (“Don't Know” or “Refused”)% Meeting Criteria
Core outcome 1: families of CSHCN will partner in decision making and will be satisfied with the services received
 1.1 Doctors usually or always made the family feel like a partner14 76624684.3
 1.2 Family was very satisfied with services received15 4908660.1
 Proportion meeting core outcome 115 25432257.5
Core outcome 2: CSHCN will receive coordinated ongoing comprehensive care within a medical home
 2.1 The child had a usual source of care38 62823890.5
  2.1a The child had a usual source for sick care38 74412290.6
  2.1b The child had a usual source for preventive care38 73712998.8
 2.2 The child had a personal doctor or nurse38 71115589.0
 2.3 The child had no problems obtaining referrals when needed20 04215478.1
 2.4 Effective care coordination was received when needed435635039.8
  2.4a The child had professional care coordination when needed452717981.9
  2.4b Doctors communicated well with each other (excellent/very good)371023754.4
  2.4c Doctors communicated well with other programs (excellent/very good)319626037.1
 2.5 The child received family-centered care36 018144466.8
  2.5a Doctors usually or always spent enough time36 79966383.6
  2.5b Doctors usually or always listened carefully36 87259088.1
  2.5c Doctors usually or always were sensitive to values and customs36 425103786.9
  2.5d Doctors usually or always provided needed information36 73472881.0
  2.5e Doctors usually or always made family feel like a partner36 83762585.9
 Proportion meeting core outcome 236 710215652.6
Core outcome 3: families of CSHCN will have adequate public and/or private insurance to pay for the services that they need
 3.1 Child had public or private insurance at time of interview38 866094.8
 3.2 Child had no gaps in coverage during year before the interview38 7818588.4
 3.3 Insurance usually or always met child's needs36 61831185.5
 3.4 Costs not covered by insurance were usually or always reasonable35 794113571.6
 3.5 Insurance usually or always permitted child to see needed providers36 70622387.8
 Proportion meeting core outcome 337 388147859.6
Core outcome 4: children will be screened early and continuously for special health care needs
 4.1 Child had at least 1 preventive medical visit in past year13 47210771.0
 4.2 Child had at least 1 dental visit in past year12 65911369.4
 Proportion meeting core outcome 413 38519451.6
Core outcome 5: community-based service systems will be organized so that families can use them easily
 5.1 Services were usually or always organized for easy use15 31026674.3
 Proportion meeting core outcome 515 31026674.3
Core outcome 6: youths with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence§
 6.1 Child has received guidance and support in transition to adulthood541422815.3
  6.1a Doctors have talked about changing needs as child becomes adult553310950.0
  6.1b Child has plan for addressing changing needs283919159.3
  6.1c Doctors discussed shift to adult provider287115941.8
 6.2 Child has received vocational or career training55548825.5
 Proportion meeting core outcome 653512915.8
  • * Data Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Survey of Children with Special Health Care Needs, 2001.

  • Data Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2001.

  • Estimates are based on data from National Survey of CSHCN interviews conducted after July 5, 2001.

  • § Criteria are restricted to CSHCN 13 years of age and older.