Evaluating Differences in the Disease Experiences of Minority Adults With Cystic Fibrosis

Abstract

Extensive research has demonstrated disparities in health outcomes and survival between non-Hispanic Caucasian (NHC) and non-Caucasian or Hispanic (minority) persons with cystic fibrosis (CF) in the United States (US). However, very little research has been done to explore the disease experiences of racial and ethnic minority persons with CF. Adult subjects with CF were approached for study participation and to characterize their experiential disease perceptions. Survey data were analyzed using Chi-Square tests and Mann-Whitney U-test for basic categorical and continuous variables, and Kruskal-Wallis one-way ANOVA using ranks for Likert scales. Minority persons reported significantly lower scores (more negative experience) when comparing themselves to others with CF (15.18 ± 2.89 vs 18.40 ± 3.18, P < .01), particularly in the areas of representation in research, experience, and support. We were able to identify the unique experiences of minority persons with CF, including perceived lower disease understanding and poorer representation compared to most others with CF. Further large studies are needed to develop and assess interventions that may be useful for serving these diverse populations.

The Lived Experience of African American Persons with Cystic Fibrosis

“…Consistent with the literature, our findings show that while minority populations with CF most often expressed satisfaction in care received by their CF care teams, some felt they had to convince clinicians to test them for CF due to their race or ethnicity (Hutchins et al, 2022). Additionally, many of those who identified as members of a minority group reported perceiving their experience with CF as being poorer than their Caucasian counterparts, feeling they did not have a voice and were underrepresented in research studies (Hutchins et al, 2022). These feelings could be further compounded by a perceived lack of representation in CF clinicians described by participants not only in the current study, but also during focus groups conducted by the Cystic Fibrosis Foundation (2022).…”

“…Mental health has been shown to have a greater impact than physical health on most aspects of health-related quality of life in those with CF (Cronly et al, 2019). It is unsurprising to note that minority populations with CF have been shown to experience higher percentages of both anxiety and depression when compared to Caucasian populations (Hutchins et al, 2022).…”

Cystic Fibrosis: A Descriptive Analysis of Deaths in a Two-Decade Period in Brazil According to Age, Race, and Sex

“…The relevance of this group becomes even more evident when we consider the value associated with the use of precision and personalized medicine in Brazil [20]. Moreover, it is important to optimize the diagnosis of CF in Brazil and to provide full access to therapy to all patients to avoid the disparities in relation to race and other issues because it is well known that race can compromise the diagnosis and the treatment even when using new modulator strategies [40,[48][49][50][51].…”

Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences

“…Selection of participants was guided by the literature (17,22). We considered possible sources of variation in patient and family experience related to differences in clinical characteristics and outcomes, adaptation to CF and illness burden, and disparities associated with race/ethnicity, gender, timely diagnosis, and access to newly-available disease-modifying therapies, as well as underrepresentation in research (17,22–25). Our sampling elements included: (1) patient age, (2) patient disease and treatment characteristics (specifically, use of CFTR modulators such as elexacaftor/tezacaftor/ivacaftor, advanced CF lung disease status, receipt of organ transplantation); (3) participant sex, and (4) race/ethnicity.…”

“…Selection of participants was guided by the literature (17,22). We considered possible sources of variation in patient and family experience related to differences in clinical characteristics and outcomes, adaptation to CF and illness burden, and disparities associated with race/ethnicity, gender, timely diagnosis, and access to newly-available disease-modifying therapies, as well as underrepresentation in research (17,(22)(23)(24)(25). Our sampling elements included:…”