Table 3.

Major barriers to care (n = 56 responses).

Major BarriersProportion Indicating Factor Was a Major Barrier to Care, %
Availability of allied health providers to support transition48.2
Patient not prepared for differences between pediatric and adult healthcare systems48.2
Availability of primary care to support transition41.1
Parents having difficulty transferring responsibility to the youth39.3
Patient/family expectations unrealistic of adult health system37.5
Communication, coordination, guidelines, and protocols between pediatric and adult systems32.1
Availability of practice resources/tools23.2
Lack of knowledge of community supports21.4
Lack of training in transition care19.6
Patient knowledge/preparation about their disease and/or skills to self-advocate at physician visits19.6
Adult rheumatologist’s skills/knowledge17.9
Inadequate communication of diagnosis, history, and/or treatment outcomes16.1
Strong bonds existing with pediatric team16.1
Lack of knowledge about disease course14.3
Adult rheumatologist availability12.5