The response rate from the BCNA Review and Survey group was 15% (283/1857). A further 26 women responded to the survey from other channels giving a total of 309 responses, of which 273 completed the survey (95.8% completion rate).
Table 1 describes the demographic characteristics of respondents. The majority of women were Caucasian (92.5%, n=285) with a mean age of 59.1 years (SD= 9.5, range 33-78, n=298). Characteristics were similar across BCNA members and non-BCNA respondents except that there was a higher proportion of women in the non-BCNA group who were self-employed (23% vs 10%) and in the BCNA group who were retired (33% vs 23%), although there were no differences between these groups on Pearson’s Chi-squared test, X2 (7, N = 308) = 6.9912, p=0.430. The majority of women (83%) had been diagnosed with Stage 0-III breast cancer. The mean time since diagnosis of breast cancer was 8.22 years (S.D= 5.14, range= 1-32 years).
Table 1 Demographic characteristics of survey respondents
Weight at diagnosis was reported by 90% of respondents (278 women) and current weight was reported by 95% of respondents (293 women). The proportion of women who were overweight or obese (BMI > 25) increased from 48% at the time of diagnosis, to 67% at the time of completing the survey. In particular, the proportion of women who were obese almost doubled, from 17% to 32%. Mean current and pre-cancer self-reported weight of survey respondents was 76.08 kg (SD= 15.49, range, 46-150 kg) and 71.24kg (SD 14.01, range 47-158) respectively. Mean self-reported current BMI was 28.02 (SD=5.88, n=285) and mean pre-cancer BMI was 26.37 (SD=5.92, n=271). One fifth (21.03%) of women went from being in the healthy weight range at diagnosis (BMI < 25), to an unhealthy weight range (BMI >25), and 60.52% of women reported an increase of BMI of greater than 1 kg/m2.
Most women (64%) reported having gained weight overall after diagnosis, with an average weight gain of 9.07 kg in this group. Of the women who reported gaining weight overall, 77.14% of women gained ≥5kg of weight. Weight gain was not correlated with time since diagnosis (n=173, r=.114, p=0.07). More than half (52.85%, n=148/280) of women rated their concern about weight as high (8-10).
Other medical conditions and symptoms
Table 2 describes the current medical conditions and symptoms that were being experienced by the respondents. The majority (62.19%, n=125/201) of women reported they were currently using hormonal therapy, of which 40% were using tamoxifen, and 44% were using an aromatase inhibitor.
Table 2 details the lifestyle habits of respondents. About 40% of women had tried some kind of diet in the previous 12 months, with the most popular diets being a “healthy balanced” diet (25/124), the 5:2 diet (26/124), vegetarian (17/124), Weight Watchers (17/124), the Dukan and Atkins diets (11 and 7/124 respectively), and meal replacements (5/124). In all, 23 different kinds of diets had been tried. The majority (58.6%) of women reported eating the recommended serves of fruit and vegetables, and 88.8% of women described their diet as excellent (n=24), very good (n=126) or good (n=118). The majority of women (83.6%) rated their health as good and above, although 38.4% of women reported that they were less active than they were at the time of cancer diagnosis and 41.6% did no exercise or low levels of physical activity. About a quarter of women had been told to restrict their diet. Of these women, 10/55 reported being told to stop eating dairy, whilst eliminating red meat (9%, n=5) and reducing volume/portion size (9%, n=5) was also commonly given advice, mostly by an oncologist or a nurse.
Table 2 Medical and lifestyle characteristics of survey respondents
The total number of respondents varied across the WEL-SF questions from 275 to 280. The majority of women rated themselves as moderately to very confident across all questions although they were slightly less likely to rate themselves as confident (0-4) for the questions on resisting eating when depressed and down (40.5%, n=113), and when in a social setting (36%, n=99) (see Figure 1).
Figure 1 Responses to individual WEL-SF questions
Advice about weight loss or weight gain
More than three quarters (79.79%, n=233/292) of women reported not receiving any advice about weight loss or weight gain prevention at the time of diagnosis. If advice was given, it was provided mostly by an oncologist (46%, n=26/56) or a BC nurse (12.5%, n=7/56).
Treatments for weight loss
Figure 2 details the number of responses for each of the treatments in terms of their perceived effectiveness for weight loss. Overall, there were few weight loss treatments that women felt were moderately to extremely effective (3-5) including exercise (n=131) and diet (n=108).
Figure 2 Perceived effectiveness of weight loss interventions
Barriers to weight loss
Figure 3 describes the perceived barriers to weight loss in this cohort of women (n=256).
Women who reported experiencing hot flushes were 2.53 times more likely to report fatigue as a barrier (95% CI 1.53 - 4.19, p=0.0001) while the relationship between peripheral neuropathy or lymphoedema and fatigue was not significant. The relationship between willpower and fatigue as cited barriers approached statistical significance (OR 1.58, 95% CI .96 - 2.60, p=0.0547).
Women who cited fatigue as a barrier were almost twice as likely to be doing low levels of physical activity or no physical activity than women who did not cite fatigue as a barrier (OR 1.86, 95% CI 1.12 3.08, p=0.0107). However, there was no association between experiencing hot flushes and doing low or no levels of physical activity.
Figure 3 Perceived barriers to weight loss
Facilitators of weight loss
Figure 4 describes the perceived facilitators of weight loss in this cohort of women (n=233). The most commonly described facilitators were a structured exercise program (46.4%, n=108), prescribed diet (36.5%, n=85), accountability to someone else (24.0%, n=56) and social support (17.6%, n=41). Only 4.3% (n=10) of women thought a breast cancer specific program would be helpful.
Figure 4 Perceived facilitators of weight loss
Among 273 respondents to the question on research priorities, the following were prioritised: physical activity (68.1%, n=186), weight maintenance (56.0%, n=153), diet (53.1%, n=145), and social support programs (39.6%, n=108). Few women wanted more research on surgical treatments (5.86%, n=16), psychological strategies (5.13%, n=14) or individualised programs (1.1%, n=3).