Center of Excellence for Pediatric Quality Measurement (CEPQM) | Development

The Center of Excellence for Pediatric Quality Measurement (CEPQM) at Boston Children’s Hospital developed the transitions to adult-focused care measure. The measure underwent a rigorous development process that included:

Literature Review

Research evaluating clinician, parent, and youth perspectives on health care transition (HCT) has been conducted in diverse patient populations, including cystic fibrosis, HIV, diabetes, gastrointestinal disease, etc. Some emergent themes included a lack of transition readiness assessments by providers, lack of transition preparation programs, and lack of focus on health systems factors which could facilitate HCT such as patient/family education and provider training. Data are extremely limited in regard to any validated, patient-centered instrument to assess youths’ transition readiness skills.

Focus Groups*

To explore concepts related to a new measure, 11 focus groups were conducted with young adults (aged 16-26) with chronic health conditions and parents of young adults with chronic conditions. Specifically, we examined young adult and parent experiences of transition from child-focused to adult-focused care. Topics included pre-transfer health care experiences for young adults, self-management skills/autonomy, and transition preparation and planning. The focus groups were conducted in both English and Spanish, and took place in three different US cities.

Cognitive Interviews*

We examined the clarity and usefulness of the draft items in the instrument with four rounds of cognitive interviews in both English and Spanish (plus an additional round of "mini" interviews after the final draft of the survey was completed). Thirty-two total interviews were conducted across three different US cities. Participants completed part or all of the survey and discussed the clarity and content of selected survey items with an interviewer. Feedback from the interviews was used to refine the survey between each round, making it more comprehensible and relevant for our population of interest.

Field Test*

The final survey instrument underwent field testing with teens from Boston Children’s Hospital and from two state Medicaid plans. The survey was mailed to subjects (16- and 17-year-olds with a chronic or complex chronic health condition), and the results were used to collect information and further refine the instrument.

Analysis of Field Test

We analyzed the data collected during field testing to refine the survey instrument, developed three composite measures, and finalized the Adolescent Assessment of Preparation for Transition (ADAPT) measure specifications. The final version of the 26-item instrument has been submitted to AHRQ/CMS. The final version of the ADAPT instrument has three composite measures.

* — Focus groups, cognitive interviews, and field tests were conducted in collaboration with CSR, the Center for Survey Research at UMass Boston. CSR is a full-scale academic survey research center with professional telephone and in-person interviewing staffs, computer assisted telephone facilities, and survey sampling capacity.