Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis.
Katherine South, Maureen George, Hossein Sadeghi and 2 others
PMID 35367087WHAT IT FOUND
Young people with cystic fibrosis described transition preparation as uneven.
Early gradual handover of self-care and shared planning helped. Abrupt provider-led transfer, especially for Black participants, felt unprepared.
Key findings
01Participants who had moved to adult care reported taking on more self-management tasks than participants still in pediatric care.
02Seven participants recalled being enrolled in CF R.I.S.E., and most of them had little interaction with it.
03Abrupt transfers were described as unilateral, and non-Hispanic/Latina/o Black participants more often said a provider initiated sudden transfer.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Small sample from one medical center, so the findings are not generalizable to all cystic fibrosis programs. Only adolescents and young adults were interviewed, not parents or healthcare providers. Interviews were in English only, although the sample included Hispanic or Latina/o participants. Female participants accounted for 25% of the sample, although cystic fibrosis affects males and females approximately equally. Participants who had transferred longer ago may have relied on memory, which can introduce recall bias. Participants may have reported more self-management responsibility than they actually had because of social desirability bias. Participants receiving regular care or with strong transition experiences may have been more likely to take part. The study did not measure clinical outcomes, so it cannot show whether transition preparation improves health or continuity of care.
The easy way to misread this
Do not read these themes as proof that early transition preparation improves health or reduces gaps in care. The study asked young people to describe their experiences, and it did not measure clinical outcomes or test the transition program.