Objective
Around half of women do not take adjuvant endocrine therapy (AET) as prescribed. Research suggests that adherence rates vary across ethnic groups. This study compared AET adherences rates in White British women and women from minority ethnic groups in the United Kingdom.
Methods
This is an observational study with 2001 breast cancer survivors recruited from outpatient clinics. Eligible women were diagnosed with primary breast cancer and prescribed AET within the last 3 years. Adherence was measured using the Medication Adherence Rating Scale. Eligible women were asked to complete a questionnaire pack that collected sociodemographic data such as age, relationship status and ethnicity. Independent samples t tests and χ2 tests were used to compare White British women and women from minority ethnic groups on self‐reported adherence to AET.
Results
Of White British women, 27.8% were classed as non‐adherent, compared to 44.4% of women from minority ethnic groups. A logistic regression controlling for relevant demographics indicated that women from minority ethnic groups had a significantly higher risk of non‐adherence than women who were White British (odds ratio = 1.50, p = 0.03)
Conclusion
Rates of non‐adherence to AET are higher in women from minority ethnic groups, which may contribute towards racial disparities in breast cancer outcomes. Research with larger and more diverse samples is needed to explore this further and to investigate the psychosocial factors driving differences in adherence.
Background
Fatigue, pain and faecal incontinence are common in people with IBD. However, little is known about co-existence of these multiple symptoms, how they inter-relate and whether people want help for these symptoms. In qualitative interviews, patients have reported that these symptoms are often ignored in clinical consultations, where the focus is on inflammation, but that they are very bothered by these symptoms, even when disease is apparently in remission. The aim of this study was to determine the presence and relationship between fatigue, pain and incontinence in people with inflammatory bowel disease, and desire for intervention for these symptoms.
Methods
A purpose-designed survey (online or postal), incorporating validated tools and demographic details, was sent to unselected UK clinic and UK IBD-BioResource adult patients. When the covid-19 pandemic halted clinic recruitment, additional self-selected UK recruits were solicited via social media. Using the validated PROMIS tools, the following definitions were used for presence of symptoms: fatigue: PROMIS fatigue T-score of 60 or more; pain: PROMIS pain intensity T-score of 60 or more; PROMIS bowel incontinence: raw score of 50 or more. Participants also reported disease activity using the relevant PRO-2 score, IBD-Control, anxiety (GAD-7), depression (PHQ-9) and quality of life (EQ-5D-5L) which will all be reported elsewhere.
Results
A total of 8486 useable responses were received (7716 online, 770 postal). 4176 reported Crohn’s disease, 4255 had ulcerative colitis or other form of IBD. There were 3281 men and 4883 women. Median age was 51 years (range 18 - 92). 2550 (30%) reported fatigue, 1766 (21%) pain and 4565 (54%) faecal incontinence according to the above definitions; 925 (10.9%) reported having all three symptoms. Demographics by symptom are shown in Table 1. Table 2 reports those participants indicating the presence of each symptom and each combination of symptoms. Table 3 shows a summary of self-defined severity and impact of symptoms (scoring scale 0-10 for both severity and impact of each symptom). Participants scored severity and impact a mean between 3.3 and 4.8, with a wide variation. 56% of all respondents (not just those with symptoms) “definitely” wanted help for fatigue; 42% wanted help for pain; 53% wanted help for incontinence. 29% reported “definitely” wanting help for all three symptoms (Table 4).
Conclusion
This study confirms that fatigue, pain and urgency are common in IBD and for the first time reports the co-existence and unmet need for help with these symptoms.
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