Implementation of a Pilot Study in Adolescent Health Care Transition Program for Chronic Granulomatous Disease: A Single Institution Experience.
Patricia Driscoll, Beatriz E Marciano, Alison Han and 3 others
PMID 39665712WHAT IT FOUND
A nurse-led transition education program was acceptable to young people with chronic granulomatous disease, but knowledge scores did not clearly improve.
It identified topics, formats, and gaps, not evidence the program works.
Key findings
01Of 25 patients invited, 13 agreed to participate and 8 completed the transition readiness assessment.
02Mean pretest score was 82% and mean post-test score was 91%, but the difference was not significant because few participants responded.
03In feedback from 4 participants and 2 parents, group sessions were described as very helpful, and topics including medications, mental wellbeing, transition, communication, genetics, and scheduling were rated most helpful.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Very few participants completed the process: 25 were invited, 13 agreed, 8 completed the readiness assessment, and 6 completed educational topics. The study was conducted at one institution and participants were self-selected, so it may not represent patients who declined, were acutely ill, or had different circumstances. The pandemic reduced onsite visits and may have affected participation and completion. The pretest and post-test difference was not significant because few participants responded. Satisfaction results came from only 4 participants and 2 parents. The paper reports implementation and satisfaction, not tested effectiveness on health, adherence, or transition outcomes.
The easy way to misread this
Do not read the 91% post-test score as proof the program works. The mean difference from 82% was not significant, few participants responded, and this was a single-institution pilot.