Breast cancer worry, uncertainty, and perceived risk following breast density notification in a longitudinal mammography screening cohort

Abstract

Background Dense breast notification (DBN) legislation aims to increase a woman’s awareness of her personal breast density and the implications of having dense breasts for breast cancer detection and risk. This information may adversely affect women’s breast cancer worry, perceptions of risk, and uncertainty about screening, which may persist over time or vary by sociodemographic factors. We examined short- and long-term psychological responses to DBN and awareness of breast density (BD). Methods In a predominantly Hispanic New York City screening cohort (63% Spanish-speaking), ages 40–60 years, we assessed breast cancer worry, perceived breast cancer risk, and uncertainties about breast cancer risk and screening choices, in short (1–3 months)- and long-term (9–18 months) surveys following the enrollment screening mammogram (between 2016 and 2018). We compared psychological responses by women’s dense breast status (as a proxy for DBN receipt) and BD awareness and examined multiplicative interaction by education, health literacy, nativity, and preferred interview language. Results In multivariable models using short-term surveys, BD awareness was associated with increased perceived risk (odds ratio (OR) 2.27, 95% confidence interval (CI) 0.99, 5.20 for high, OR 2.19, 95% CI 1.34, 3.58 for moderate, vs. low risk) in the overall sample, and with increased uncertainty about risk (OR 1.97 per 1-unit increase, 95% CI 1.15, 3.39) and uncertainty about screening choices (OR 1.73 per 1-unit increase, 95% CI 1.01, 2.9) in Spanish-speaking women. DBN was associated with decreased perceived risk among women with at least some college education (OR 0.32, 95% CI 0.11, 0.89, for high, OR 0.50, 95% CI 0.29, 0.89, for moderate vs. low risk), while those with a high school education or less experienced an increase (OR 3.01, 95% CI 1.05, 8.67 high vs. low risk). There were no associations observed between DBN or BD awareness and short-term breast cancer worry, nor with any psychological outcomes at long-term surveys. Conclusions Associations of BD awareness and notification with breast cancer-related psychological outcomes were limited to short-term increases in perceived breast cancer risk dependent on educational attainment, and increases in uncertainty around breast cancer risk and screening choices among Spanish-speaking women.

The impact of breast density notification on psychosocial outcomes in racial and ethnic minorities: A systematic review

“…Table 1 summarises the study characteristics. There were 28 quantitative studies (20 cross-sectional studies including two with a qualitative interview component [ 17 , [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] , [39] , [40] , [41] , [42] , [43] ], five cohort studies including one with a qualitative survey component [ [44] , [45] , [46] , [47] , [48] ], two randomised trials [ 49 , 50 ] and one quasi-experimental study [ 51 ], and four qualitative studies (three interviews [ [52] , [53] , [54] ] and one focus group [ 55 ]). Among quantitative studies, the sample size ranged from 77 to 631,478.…”

“… N = 2306 n = 1248 (54) N = 61 (qualitative part) 1058 (48) Non-Hispanic White 581 (24) Non-Hispanic Black 338 (15) Hispanic, 168 (9) Asian 160 (5) Other Both Mod Kressin et al, 2023 [ 17 ] US (national) Both Cross-sectional Telephone survey Main factor Survey in English and Spanish. N = 1322 n = 713 (54) 609 (46) Non-Hispanic White 317 (24) Non-Hispanic Black 202 (15) Hispanic 93 (7) Asian 101 (7) Other Personal Mod Kyanko et al, 2020 [ 30 ] US (national) Both Cross-sectional Internet survey Covariate Nil N = 1928 Diversity = 37% 1211 (63) White 248 (13) Black 295 (15) Hispanic 133 (7) Other 42 (2) Mixed Personal Mod Lee Argov et al, 2022 [ 48 ] US (NY) Post Cohort Online, telephone, or mailed surveys Covariate English and Spanish-speaking staff and surveys N = 607 n = 552 (91) 188 (31) Hispanic Mixed/Other 151 (25) Hispanic White 120 (20) Hispanic Black 75 (12) Non-Hispanic Black 56 (9) Non-Hispanic White 17 (3) Non-Hispanic Mixed/Other …”

“…All but one study [ 46 ] were conducted in the US. Among US studies, there were eight national studies [ 17 , [26] , [27] , [28] , [29] , [30] , 40 , 41 ], six from New York [ [42] , [43] , [44] , 47 , 48 , 54 ], six from Michigan [ [32] , [33] , [34] , [35] , 49 , 51 ], two from Massachusetts [ 52 , 53 ], two from Arizona [ 39 , 50 ] and one from California [ 45 ], Virginia [ 25 ], Washington [ 31 ], Florida [ 55 ], District of Columbia [ 38 ], Maryland [ 37 ] and Connecticut [ 36 ] respectively.…”

“…Four were conducted prior to the BD notification mandate [ 34 , 35 , 38 , 49 ], 18 post-mandate (including the Australian study, conducted in Western Australia which has a BD notification policy but not a mandate) [ 25 , [31] , [32] , [33] , 36 , 37 , 39 , [42] , [43] , [44] , [46] , [47] , [48] , 50 , [52] , [53] , [54] , [55] ], eight US-wide studies capturing women residing in both BD notification and non-BD notification mandated states [ 17 , [26] , [27] , [28] , [29] , [30] , 40 , 41 ], and two studying both pre- and post-legislation periods [ 45 , 51 ]. Four assessed general BD information [ 25 , 39 , 40 , 49 ], 16 assessed the woman's personal BD notification [ 17 , 28 , 30 , [32] , [33] , [34] , 36 , 41 , [45] , [46] , [47] , [51] , [52] , [53] , [54] , [55] ], three gave hypothetical BD notifications [ 37 , 42 , 43 ] and nine assessed both general and personal BD information [ 26 , 27 , 29 , 31 , 35 ...…”

“…In 12 studies, race and ethnicity (or a related factor) was a main study factor [ 17 , [32] , [33] , [34] , [35] , 39 , 47 , [49] , [50] , [51] , 53 , 54 ], including four which included only Hispanic, Latina or Spanish-speaking women [ 39 , 50 , 53 , 54 ], and in 20 studies race and ethnicity was a covariate [ [25] , [26] , [27] , [28] , [29] , [30] , [31] , [36] , [37] , [38] , [40] , [41] , [42] , [43] , [44] , [45] , [46] , 48 , 52 , 55 ]. It should be noted that 12 studies reported on Asian communities [ 17 , 25 , 26 , 28 , 29 , [36] , [37] , [38] , [45] , [46] , [47] , 55 ], however these studies were all conducted in the United States except for one study that was conducted in Australia [ 47 ].…”