Negative cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking: an international cancer benchmarking partnership (ICBP) study

Four items from the ABC assessed the anticipated patient interval for symptoms that could be signs of cancer. In the present study, lung cancer and colorectal cancer were the two target cancers and the anticipated patient intervals for these two cancers were assessed by asking the respondents how long they would wait before seeking help after experiencing a persistent cough and rectal bleeding, respectively. No standardised and internationally accepted guidelines are available about when to seek help for these symptoms. As presented in Table 1, anticipated patient intervals of more than one month for persistent cough and of more than one week for rectal bleeding were categorised as “long”. These cut-offs were chosen for two reasons. First they ensured that we had enough subjects in our “long” and “short” patient interval categories. Second, cut-offs appeared reasonable as everyone experiences a cough now and then and the duration of the symptom plays an important role when determining whether the cough needs medical attention. On the contrary, rectal bleeding happening more than once should always cause concern.

The ABC included 11 possible cancer symptoms and respondents were asked to determine whether they thought that each symptom could be a warning sign of cancer. The warning signs most closely related to the two target cancers were persistent cough or hoarseness and unexplained bleeding. Response options and coding are shown in Table 1.

Six statements examined respondents’ beliefs about cancer. The wording, response options and coding are shown in Table 1. The number of NCBs endorsed was summed for each respondent. As the proportion of respondents declaring five or six NCBs was limited (0.5%), the survey data from these respondents were grouped with the survey data from respondents declaring four NCBs to ensure sufficient statistical power.

Data were collected on sex, age (categorised as 50 to 59 years, 60 to 69 years, 70 to 79 years and 80 years or older), marital status (categorised as married/cohabiting vs. single/divorced/separated/widowed), highest level of education (categorised as no university degree vs. university degree), experience of cancer themselves and/or in family/friend (categorised as yes/no), country and smoking status (categorised as never/former vs. current). Smokers have been shown to declare more NCBs than non-smokers [13].

The associations between non-recognition of persistent cough or hoarseness and unexplained bleeding as cancer symptoms, number of NCBs about cancer and long anticipated patient intervals for persistent cough and rectal bleeding, respectively, were examined in two separate logistic regression analyses. Odds ratios (ORs) were calculated as measures of association. In the adjusted analyses, both non-recognition of symptom and number of NCBs were included as independent variables and sex, age, marital status, highest level of education, smoking status, experience of cancer and country were included as co-variables. As a sensitivity analysis, the logistic regression analyses were repeated with the answer “don’t know” to the questions about whether persistent cough or hoarseness and unexplained bleeding could be signs of cancer coded as “non-recognition” instead of missing. To test for a moderating effect of NCBs on the association between non-recognition of the symptoms and length of anticipated patient intervals, two interaction terms were computed: non-recognition of persistent cough or hoarseness as a cancer symptom multiplied with the number of NCBs and non-recognition of unexplained bleeding as a cancer symptom multiplied with the number of NCBs. These two interaction terms were included in two separate logistic regression analyses which also included independent and demographic variables. The likelihood-ratio (LR) test was used to determine whether the models with and without the interaction terms were statistically significantly different. In case of a statistically significant interaction, predictive margins would be used to visualise the effect and to assist interpretation (https://​www.​cscu.​cornell.​edu/​news/​statnews/​stnews84.​pdf). P-values of 5% or less were considered statistically significant. Data were analysed using STATA 13.1.

Not recognising persistent cough/hoarseness and unexplained bleeding as possible signs of cancer and number of NCBs were independently associated with an increased likelihood of longer anticipated patient intervals for persistent cough and rectal bleeding, respectively. There was a dose-response relationship between number of NCBs and longer anticipated patient intervals for persistent cough and rectal bleeding. Hence, a high level of NCBs may act as a barrier to help-seeking when experiencing a symptom that could be a sign of cancer. Furthermore, we found that number of NCBs was an effect moderator as when respondents reported four or more NCBs, the risk of a long anticipated patient interval for rectal bleeding would be the same whether the respondent had recognised unexplained bleeding as a cancer symptom or not. Number of NCBs could only be documented as an effect moderator in the model of bleeding and not in the model of cough. Respondents estimated that they would wait longer before seeking help for a persisting cough than for rectal bleeding and in line with this finding, respondents in another survey seldom recognised cough or hoarseness as a cancer symptom [14]. If respondents do not see persistent cough as a “red flag” symptom in the same way they see rectal bleeding, it seems plausible that the role of NCBs may be different in the two models. The moderating potential of NCBs may only come into play when the symptom is experienced as serious and the symptom recognition thereby causes anxiety [15].

We find it difficult to explain why the probability of a long anticipated patient interval for rectal bleeding decreased with increasing number of NCBs among those who did not recognise unexplained bleeding as a cancer symptom. The number of respondents who did not recognise unexplained bleeding as a cancer symptom was relatively small compared to those who did and therefore, when subdividing the group based on number of NCBs, the confidence intervals became rather wide as was evident in Fig. 2 and results from this analysis should be interpreted with caution.

Among the strengths of this study was the use of a population-representative sample and that we used an internationally validated questionnaire for assessing recognition of cancer symptoms and NCBs outcomes [12]. A potential weakness is that the anticipated help-seeking interval was hypothetical and might not mirror the response if a person experienced the symptom in reality. The majority of respondents (61%) reported that they would seek help immediately if they experienced rectal bleeding, but a review of 38 studies examining patient intervals in colorectal cancer showed that the actual median patient interval ranged from 7 days to 5 months [16]. This suggests that at least some of the participants in our study have underestimated how long they would actually wait before seeking help. Further, since the present data were cross-sectional, the causality of associations cannot be determined.

Several other studies have found that lack of knowledge of cancer symptoms is associated with longer anticipated patient intervals [5] and actual patient intervals [2‐4]. The influence of NCBs on length of the patient interval has been less frequently studied. Qualitative studies have found that negative expectations of the health care professional make patients with potentially malignant oral symptoms more likely to postpone help-seeking [17], that older women (≥ 65 years) were deterred from seeking help because of negative expectations to surgical and medical treatments [18] and that poor confidence in the healthcare system was a reason for not seeking help when experiencing cancer alarm symptoms [19]. Further, a review of 32 qualitative studies revealed that a fatalistic attitude to cancer was one of the main reasons for delaying help-seeking as well as interpreting symptoms as benign and self-limiting [20].

The Extended Parallel Process Model (EPPM) [21, 22] may be useful for explaining the moderating effect of NCBs on the increased likelihood of longer anticipated patient intervals for potential colorectal symptoms. Thus, recognition of a symptom as a possible sign of cancer may give rise to fear, which has been identified as a barrier to help-seeking as well as a factor which could promote prompt help-seeking for cancer symptoms [19, 23]. According to the EPPM, fear will induce protective danger control processes (e.g. fast help-seeking) only if the individual believes that s/he is able to deal with the threat [21, 24]. If NCBs about the disease and its treatment are salient and the individual believes that no action will be effective dealing with the disease, the fear will induce fear control processes such as denial and downplay of worrisome symptoms, meaning that help-seeking may be postponed.