Adult patients with cystic fibrosis (CF) who are non-Caucasian or Hispanic experience the disease differently than those who are non-Hispanic Caucasian individuals, according to a new study published in the Journal of Patient Experience.
The results showed a self-reported perception of less understanding of the disorder, a more negative experience compared with others with the condition, and an array of complex emotions surrounding these unique experiences, including anxiety and depression. Scant research has been conducted to explore the disease experiences among racial/ethnic minorities with CF.
Inclusion criteria for the current analysis were an age of at least18 years, a prior diagnosis of CF, and treatment at a local academic adult CF care center. All participants completed an online survey to evaluate self-perception of their disorder; experiences with healthcare, family, culture, and community support; and self-comparison with other patient populations with CF. A total of 82 minority adults with CF completed the survey.
Patients were included in the minority cohort if they identified as Hispanic and/or American Indian, Alaska Native, Asian, Black or African American, Native Hawaiian or Pacific Islander, “mixed,” or “other” race.
With more effective treatments for CF being developed, the median survival among individuals with the disease has risen steadily to 50.0 years by 2020. A possible explanation for the perceived lower understanding of CF in minority adults is their underrepresentation in CF research and campaigns. This situation may lead to some disconnect from the community and distance from ongoing CF research, creating feelings of decreased understanding of their disease and of new treatments.
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In the current analysis, the minority participants with CF reported significantly lower scores (ie, more negative experiences) on the Likert scale when comparing themselves with those from other populations (15.18±2.89 vs 18.40±3.18, respectively; P <.01). Lower scores were, in fact, indicative of their experience being “perceived as worse than [that] of most others with CF.”
In the areas of representation in research (1.91±1.38 vs 3.09±1.27, respectively; P <.01), and support from family and the community (3.18±1.08 vs 4.03±1.12, respectively; P <.05), significant differences were observed as well.
“Future research studies will be needed to evaluate these questions on a larger scale and to develop and assess interventions that may be useful for serving these populations,” the investigators said. Qualitative comments from minority participants with CF suggest that “there is more to the story than was captured by quantitative data alone.”
Hutchins K, Barr E, Bellcross C, Ali N, Hunt WR. Evaluating differences in the disease experiences of minority adults with cystic fibrosis. J Patient Exp. Published online July 14, 2022. doi:10.1177/23743735221112629