Objective
Transition readiness assessment has focused attention on adolescent knowledge and skills, but data-driven benchmarks have not been established.
Methods
Patients with IBD, aged 25–55 years, attending an outpatient gastroenterology clinic, were recruited to complete a voluntary, confidential survey asking patients to recall medications and potential side effects, and to rate their degree of independence performing health maintenance tasks.
Results
The 141 respondents (48% response rate) had mean age of 36 years with median disease duration of 11 years. They were 60% female, 54% had Crohn’s disease, and 23% were diagnosed before age 18. Nearly all patients were fully independent answering doctor’s questions during the visit (93%) and scheduling office visits (92%). Excluding pharmacy pick up, full independence seen in only 57%, while 16% significantly delegated tasks. No differences by gender, disease type, medication class, age at disease onset, or disease duration were found across levels of self-management. Almost all (97%) respondents could recall medication name, while fewer were able to recall dose (63%) or frequency (65%). Side effect knowledge was poor; among 81 patients on a biologic or immunomodulator, only 17 (21%) cited cancer and 22 (27%) cited infection.
Conclusions
Adolescent IBD transition programs now have empiric data from this study about adult benchmarks for independence in self-management skills. Further research can establish which skills correlate with medication adherence and active collaboration with the medical team. This study also exposes important gaps in medication risk knowledge and may allow improved patient education for subgroups of adult IBD patients.