Decision role preferences for return of results from genome sequencing amongst young breast cancer patients.
Cindy B Matsen, Sarah Lyons, Melody S Goodman and 2 others
PMID 30098907WHAT IT FOUND
Most young breast cancer patients wanted an active or shared role in deciding which genome sequencing results to receive.
Preferences differed between clinical care and research. Ask each patient directly; demographics alone do not predict preference.
Key findings
01In medical care, 45% preferred a collaborative role and 45% an active role; in research, 57% preferred an active role and 33% a collaborative role.
02After accounting for other factors in medical care, very good or excellent health and longer time since diagnosis were associated with preferring an active rather than passive role, while having biological children was associated with less likely preferring an active role.
03After accounting for other factors in research, very good or excellent health, older age at diagnosis, longer time since diagnosis, and higher subjective numeracy were associated with an active role, and health, older age at diagnosis, and longer time since diagnosis were associated with a collaborative role compared with passive.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The survey asked about hypothetical decisions about future return of results, so preferences may not match what patients would choose when actually facing real results. Participants were mostly non-Hispanic white, married, highly educated, and high income, and African American women were underrepresented compared with the cohort, so results may not apply to more diverse patients. The decision role questions did not distinguish actionable from non-actionable results, so preferences may differ depending on whether a result can guide treatment. The study included women diagnosed with breast cancer at age 40 or younger, and it is not clear whether the findings apply to people who are healthy or have other conditions. This is a cross-sectional survey, so the factors associated with preference do not show that they caused the preference.
Declared interests
The authors reported no conflicts of interest. The article metadata lists NIH and U.S. government research support.
The easy way to misread this
Do not conclude that young breast cancer patients generally want to make decisions about genome sequencing results alone. Most preferred active or collaborative roles, but preferences differed by context and by factors, and the survey asked about hypothetical scenarios rather than real decisions.