Julia, thanks for your post! I’d be interested in seeing more about the FOCUS study. I just finished reading the Ashing-Giwa et al. article: Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates that Sarah recommended and as it focused on African-American breast cancer survivors understandings of survivorship care plans (SCP) it would be valuable to see in what ways the data overlaps and where there are gaps.
In brief, the study used a community-based participatory framework to structure three facilitated consensus meetings with African-American (AA) breast cancer survivors and advocates. They identified content domains of SCPs that are culturally responsive this population. Participants raised the idea of including patient-centered information within the purpose and implementation of an SCP. Concerns were raised that higher mortality in AA populations could be due to greater comorbidities and inadequate surveillance and follow-up care.
It is interesting to hear that AA patients were more likely than others to report receiving follow up care instructions as, at least in the case of the Ashing-Giwa research, standard SCP templates lacked adequate content in several areas including: health history, comorbidity, health promotion, and functioning, which they felt exacerbated health risks for poor disease outcomes. Since SCPs are intended to educate patients and engage them with their medical care team, it seems logical and imperative to develop plans in ways that heighten survivor engagement by making plans more culturally responsive.
I'm looking forward to hearing more!