Patient‐reported causes of distress predict disparities in time to evaluation and time to treatment after breast cancer diagnosis

Abstract

Background We examined whether the National Comprehensive Cancer Network distress thermometer (DT), a patient‐reported outcome measure, could be used to identify levels and causes of distress associated with racial/ethnic disparities in time to care among patients with breast cancer. Methods We identified women aged ≥18 years with stage 0‐IV breast cancer who were diagnosed in a single health system between January 2014 and July 2016. The baseline visit was defined as the first postdiagnosis, pretreatment clinical evaluation. Zero‐inflated negative binomial (ZINB) regression (modeling non‐zero DT scores and DT scores = 0) and logistic regression (modeling DT score ≥ 4, threshold for social services referral) were used to examine associations between baseline score (0 = none to 10 = extreme) and types of stressors (emotional, familial, practical, physical, spiritual) after adjustment for race/ethnicity and other characteristics. Linear regression with log transformation was used to identify predictors of time to evaluation and time to treatment. Results A total of 1029 women were included (median baseline DT score = 4). Emotional, physical, and practical stressors were associated with distress in both the ZINB and logistic models (all P < .05). Black patients (n = 258) were more likely to report no distress than Whites (n = 675; ZINB zero model odds ratio, 2.72; 95% CI, 1.68‐4.40; P < .001) despite reporting a similar number of stressors (P = .07). Higher DT scores were associated with shorter time to evaluation and time to treatment while being Black and having physical or practical stressors were associated with delays in both (all P < .05). Conclusions Patient‐reported stressors predicted delays in time to care, but patient‐reported levels of distress did not, with Black patients having delayed time to care despite reporting low levels of distress. We describe anticipatory, culturally responsive strategies for using patient‐reported outcomes to address observed disparities.

Characterizing participants in the North Carolina Breast and Cervical Cancer Control Program: A retrospective review of 90,000 women

“…However, our findings demonstrate that expanding access to care is not a panacea, and mitigating insurance as a barrier is not enough to achieve equity. Previous work has identified numerous other potentially modifiable barriers to timely treatment, including a lack of support with childcare, household responsibilities, job‐related demands, and care coordination 26‐28 . Thus, the racial/ethnic minority women served by NC BCCCP may still disproportionately face other challenges that keep them from attaining equitable outcomes.…”

Characterization of Clinical Symptoms by Race Among Women With Early-Stage, Hormone Receptor–Positive Breast Cancer Before Starting Chemotherapy

“…Our finding that White women reported greater distress than Black women is consistent with previous epidemiologic surveys that Black women report lower levels of distress compared with White women during cancer treatment and in later survivorship. 51 , 52 , 53 Prior research identified several potential protective factors that may be associated with this difference (eg, resilience, social support, and religious beliefs). 51 , 54 Moreover, Black women may use different coping strategies (eg, suppressing emotions and wishful thinking) that may be associated with lower reporting of distress, whereas White women may be more comfortable expressing emotions.…”

“… 51 , 52 , 53 Prior research identified several potential protective factors that may be associated with this difference (eg, resilience, social support, and religious beliefs). 51 , 54 Moreover, Black women may use different coping strategies (eg, suppressing emotions and wishful thinking) that may be associated with lower reporting of distress, whereas White women may be more comfortable expressing emotions. 55 Accordingly, our decomposition results suggest that, if Black women had the same characteristics as White women, they would have reported even lower (ie, better) distress composite scores, widening the gap between the 2 groups.…”

Prioritizing Health Equity in Patient-reported Outcome Measurement to Improve Surgical Care

“…Although we do not suggest that PROs can solve the lack of access to medical care for various communities, they may help in identifying barriers or challenges to those who have not received care. 17 This becomes particularly powerful when PROMS are co-administered with social determinants of health questionnaires, allowing researchers and clinicians to better quantify the differential impact of surgery on the lives of patients with more or less social stressors. This not only facilitates quality improvement but allows surgeons and researchers to tailor interventions to improve equity in care and provide better patient counseling.…”