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:
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.
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
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). 32 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.
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.