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The Item Set for Children with Chronic Conditions is an extensive set of items that assess the experiences of this population with health plans and health care services. It allows sponsors to compare the experiences of children with special health care needs with those of similar children in other health plans and/or the general population of children in the same plan.

This set of supplemental items was designed to be used with the Child Medicaid version of the Health Plan Survey, but may be used with the Child Commercial version as well. It consists of two types of questions:

• A set of supplemental questions regarding the health care experiences of children with chronic conditions. 
• A five-item screener that classifies children with chronic conditions during the analysis stage after the survey has been administered.

Browse the Item Set for Children with Chronic Conditions.

Definition of Children with Chronic Conditions

The CAHPS methodology uses the Maternal and Child Health Bureau's definition of children with special health care needs, which is based on consequences rather than specific conditions or diseases: “Children with special health care needs are those who have a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that generally required by children.”¹

Research indicates that children with chronic conditions account for nearly 19 percent of all children under 18², although some sponsors of the CAHPS Health Plan Survey may serve a relatively higher proportion of children with chronic conditions than is found in the general population. The purpose of the screener items is to identify these children in the surveyed population. Read more about the screener items in the Item Set for Children with Chronic Conditions.

Quality Measures from the Item Set for Children with Chronic Conditions

The Item Set for Children with Chronic Conditions produces the following measures for this population:

• Access to Prescription Medicines.
• Access to Specialized Services.
• Family-Centered Care:
  • Having a Personal Doctor or Nurse who Knows the Child.
  • Shared Decisionmaking.
  • Getting Needed Information.
• Coordination of Care and Services.

Review the measures from the Item Set for Children with Chronic Conditions.

Using Results from the Item Set for Children with Chronic Conditions

Users of this item set can consider two options:

• Report and review the standard CAHPS composite and rating measures for two separate groups:
  • The general population of children.
  • The children with chronic conditions.
  This will allow you to identify the ways in which the experiences and perceptions of these two groups differ as well as the ways in which they are consistent.
• Report and review the measures for children with chronic conditions (listed above), which capture the domains of care that are especially important for this segment of the population.

Development of the Item Set for Children with Chronic Condition

This item set for children was developed through the Child and Adolescent Health Measurement Initiative (CAHMI), with substantial input from the CAHPS Consortium and the Agency for Healthcare Research and Quality (AHRQ). CAHMI's Living with Illness Task Force advised the organization's research staff during the development, testing, and refinement of the children's chronic conditions set. .

In 2002, this optional set of items was integrated into the 3.0 version of the CAHPS Health Plan Survey's child questionnaires. In 2007, the item set was integrated into the Child Medicaid Questionnaire and updated to make it consistent with the 4.0 version of the survey. More recently, the instructions for item placement were revised for the 5.0 and 5.1 versions of the Health Plan Survey.

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^1. McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B. A new definition of children with special health care needs. Pediatrics. 1998 Jul;102(1 Pt 1):137-40.

^2. Child and Adolescent Health Measurement Initiative. 2018-2019 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Retrieved 11/19/20 from .