Of the 1224 patients eligible for participation in this study, 1143 (93%) were successfully contacted and 818 (72%) agreed to participate. There were no differences between the 818 participants and the 406 non-participants in terms of gender (males: 55% vs. 59%, p=0.16), type of transplant (autologous 49%, allogeneic 41%, matched unrelated donor 10% vs. 47%, 45%, 8%, p=0.35, respectively), primary diagnosis (chronic myeloid leukemia 26.5%, acute myeloid leukemia 22.5%, Hodgkin and non- Hodgkin lymphoma 32.9%, acute lymphocytic leukemia 6.0%, other 12.2% vs. 24.6%, 20.0%, 32.8%, 8.4%, 14.3%, respectively, p=0.37), and risk of relapse at HCT (61.6% vs. 63.6%, p=0.51). However, participants were older at HCT compared to non-participants (39 vs. 36 years, p<0.001). The age difference was predominantly observed in non-Hispanic whites (40 vs. 37 years, p<0.001). For Hispanic survivors, age at HCT was similar for participants and non-participants (35 vs. 36, p=0.72).
Self-reported race/ethnicity resulted in identification of 681 non-Hispanic whites and 137 Hispanics in this cohort (16.7%). Among the 137 Hispanics, 96 reported a reasonable understanding of written and spoken English, while 41 were monolingual Spanish-speaking.
The demographic characteristics of the entire cohort, by race/ethnicity and by language are described in . Over one half of the cohort was male and the median age at HCT was 38 years. Median length of follow-up was 6.6 years (range, 2 to 24.4 years), and 56% of the cohort had been followed for over 5 years. The Hispanic HCT survivors were significantly younger than non-Hispanic whites at time of HCT (p=0.02) and at study participation (p=0.003). In addition, Hispanic survivors were significantly more likely to be uninsured (22.4% vs. 4.6%, p<0.001); to report a lower educational background (some high school or lower education: 37.5% vs. 6%, p<0.001); and to report household incomes below $20,000 (45.6% vs. 8.8%, p<0.001). The time from HCT to study participation was significantly longer for Hispanics when compared with non-Hispanic whites (mean follow-up time 8.7 vs. 7.6 years, p=0.01). Among the Hispanic survivors, the mono-lingual Spanish-speaking survivors were older at the time of HCT and at study participation, and had lower education as well as household income, when compared to their English-speaking counterparts.
Demographic characteristics of Hispanic and non-Hispanic white survivors of HCT.
describes the clinical characteristics for the entire cohort, by the two race/ethnicities of survivors (Hispanics vs. non-Hispanic whites) and by the preferred spoken language. A significantly larger proportion of Hispanic survivors had undergone allogeneic HCT (62% vs. 36%, p<0.001) and received cyclosporine A (57% vs. 35%, p<0.001) as either prophylaxis or treatment for GvHD. Among the Hispanic survivors, English and Spanish-speaking Hispanic survivors were comparable in terms of primary diagnosis, risk of relapse at HCT, and use of TBI-based conditioning regimen. However, the monolingual Spanish-speaking Hispanic survivors were more likely to have been exposed to cyclosporine A for GvHD prophylaxis/ treatment. A larger proportion of Hispanic survivors expressed lack of concern for future health compared to non-Hispanic white survivors (11% vs. 4.5%, p=0.002).
Clinical characteristics of Hispanic and non-Hispanic White HCT survivors.
Patterns of Healthcare Utilization
The overall healthcare utilization by ethnicity and spoken language, and stratified by type of transplantation is shown in . Hispanic survivors were significantly less likely to report general contact with the healthcare system (93% vs. 98%, p=0.001) in the two years preceding the study, when compared with the non-Hispanic whites. Both groups reported comparable prevalence of GPE (66% vs. 71%, p=0.23). However, Hispanic survivors were significantly more likely to report a visit to the Cancer/HCT center than non-Hispanic whites (88% vs. 81%, p=0.03). Among Hispanic survivors, the monolingual Spanish-speaking Hispanics were significantly less likely to report GPE (49% vs. 73%, p=0.006) compared to English-speaking Hispanics.
Healthcare utilization by Hispanic and non-Hispanic white survivors of HCT
When stratified by type of transplant, a similar pattern was observed in both groups. For the entire cohort, Hispanic survivors were more likely to report cancer/HCT center visits as compared to non-Hispanic whites. The differences by ethnicity were not statistically significant among survivors of autologous HCT. For allogeneic HCT survivors, Hispanics were less likely to report general contact (p=0.001) and more likely to report Cancer Center/HCT-related visits (p=0.07) when compared to non-Hispanic whites. Furthermore, the monolingual Spanish-speaking Hispanics were less likely to report GPE compared to English-speaking Hispanics in both transplant groups, but the difference was significant in survivors of allogeneic HCT only (47% vs. 73%, p=0.01).
Healthcare utilization, as measured by self-reported general medical contact, GPE and visits to Cancer/HCT center, as a function of time after HCT is shown in .
Healthcare Utilization reported by non-Hispanic whites
The prevalence of general medical contact remained high and did not change significantly over time (99% at 2–5 years, 98% at 6–10 years, 97% at 11+ years after HCT, p for trend= 0.26). There was a significant increase in the prevalence of GPE from 67% at 2–5 years, to 73% at 6–10 years and 76% at 11+years after HCT (p for trend=0.05). On the other hand, Cancer/HCT center visits declined significantly from 94% at 2–5 years to 79% at 6–10 years and 54% at 11+ years after HCT (p for trend <0.001).
Healthcare Utilization reported by Hispanics
Over 90% of Hispanic survivors continued to report general medical contact up to 11+ years from transplantation and this did not change significantly over time (96% at 2– 5 years, 92% at 6–10 years, 92% at 11+ years after HCT, p for trend=0.40). The prevalence of GPE also did not change significantly over time (66% at 2–5 years, 69% at 6–10 years, vs. 61% at 11+ years after HCT, p for trend=0.68). However, the Cancer/HCT center visits declined over time from 96% at 2–5 years to 86% at 6–10 years and 81% at 11+ years after HCT (p for trend=0.03).
Comparison of Healthcare Utilization between non-Hispanic whites and Hispanics
The prevalence of general medical contact remained high over time and did not differ between Hispanic and non-Hispanic survivors (p for follow-up time and race interaction =0.95). Although there was a significant increase in the prevalence of self-reported GPE over time in non-Hispanic whites, and no significant change was observed in Hispanic survivors, the difference was not statistically significant (p for interaction = 0.23). In both groups, Cancer/HCT center visits declined over time. However this decline in Cancer/HCT center visits did not differ significantly between the two groups over time (p for interaction=0.23).
Risk factors for Lack of Healthcare Utilization
The results of multivariate analysis for risk factors associated with lack of healthcare utilization for the entire cohort are shown in .
Risk factors for absence of healthcare utilization in entire cohort of Hispanic & non-Hispanic survivors of HCT
General Medical Contact
Uninsured individuals were significantly less likely to have general medical contact than those who had medical insurance (OR=3.82, 95% CI: 1.33, 11.02). Compared to males, female HCT survivors were more likely to report general medical contact (OR (lack of reporting) = 0.23, 95% CI, 0.07–0.78).
Individuals who were mono-lingual Spanish-speaking (OR = 2.56, 95% CI: 1.35, 4.87), and those reporting fair/poor current health (OR = 1.96, 95% CI: 1.38, 2.80) were significantly more likely to report lack of GPE. Individuals who were older at the time of study participation were less likely to report lack of GPE (p for trend =0.007).
Cancer/ HCT Center Visit
Hispanic race (OR (for lack of reporting a visit) = 0.42, 95% CI: 0.22, 0.80), age >45 years at HCT (OR (lack of reporting a visit) = 0.54, 95% CI: 0.31, 0.92), exposure to cyclosporine A (OR (lack of reporting a visit) = 0.44, 95% CI: 0.28, 0.71) were significantly associated with reporting a Cancer/ HCT center visit. Increasing follow-up time (OR = 8.29, 95% CI: 4.64, 14.81) and lack of concern for future health (OR = 3.97, 95% CI: 1.95, 8.09) were associated with lack of Cancer/ HCT center visit. When stratified by type of transplant, in both autologous and allogeneic HCT groups, Hispanic race was associated with reporting a Cancer/HCT center visit (OR (lack of reporting a visit) =0.41, 95% CI: 0.14, 1.19; OR=0.41, 95% CI:.0.18, 0.92). The association is similar in magnitude but only statistically significant in allogeneic HCT group.
Multivariate analyses of risk factors for lack of healthcare utilization among non-Hispanic whites and Hispanics are shown in .
Risk factors for absence of healthcare utilization in non-Hispanic white and Hispanic survivors of HCT
Non- Hispanic Whites
Fair or poor current health (OR = 2.10, 95% CI: .41, 3.12) was significantly associated with lack of GPE. Older age at study participation was significantly associated with reporting of GPE (p for trend=0.007).
Cancer/ HCT Center Visit
Lack of concern for future health (OR=5.09, 95% CI: 2.22, 11.67) and longer follow-up (OR = 6.34 at 11+ years, 95% CI: 3.46, 11.6) were significantly associated with lack of HCT/Cancer center visit. Exposure to cyclosporine A (OR (lack of Cancer/HCT visit) = 0.54, 95% CI: 0.33, 0.89), was significantly associated with reporting Cancer / HCT Center visit.
General Medical Contact
Lack of concern for future health was significantly associated with reporting lack of general medical contact (OR = 4.71, 95% CI: 1.04, 21.28).
Individuals with high school or college education were more likely to report a GPE (OR (lack of GPE) = 0.34, 95% CI: 0.16, 0.71).
Cancer/ HCT Center Visit
Increasing time of follow-up was the o nly independent risk factor significantly associated with the lack of Cancer/HCT center visit for Hispanic survivors (OR = 5.79 at 11+ years, 95% CI: 1.13, 29.8).