Kelly Winstanley

Help seeking for cancer ‘alarm’ symptoms: a qualitative interview study of primary care patients in the UK

Background Delay in help seeking for cancer ‘alarm’ symptoms has been identified as a contributor to delayed diagnosis. Aim To understand people’s help-seeking decision making for cancer alarm symptoms, without imposing a cancer context. Design and setting Community-based, qualitative interview study in the UK, using purposive sampling by sex, socioeconomic status, and prior help seeking, with framework analysis of transcripts. Method Interviewees (n = 48) were recruited from a community-based sample (n = 1724) of adults aged ≥50 years who completed a health survey that included a list of symptoms. Cancer was not mentioned. Participants reporting any of 10 cancer alarm symptoms (n = 915) and who had consented to contact (n = 482) formed the potential pool from which people were invited to an interview focusing on their symptom experiences. Results Reasons for help seeking included symptom persistence, social influence, awareness/fear of a link with cancer, and ‘just instinct’. Perceiving the symptom as trivial or ‘normal’ was a deterrent, as was stoicism, adopting self-management strategies, and fear of investigations. Negative attitudes to help seeking were common. Participants did not want to be seen as making a fuss, did not want to waste the doctor’s time, and were sometimes not confident that the GP could help. Conclusion Decision making about cancer alarm symptoms was complex. Recognition of cancer risk almost always motivated help seeking (more so than the fear of cancer being a deterrent), assisted by recent public-awareness campaigns. As well as symptom persistence motivating help seeking, it could also have the reverse effect. Negative attitudes to help seeking were significant deterrents.

A survey study of women's responses to information about overdiagnosis in breast cancer screening in Britain.

Background:There is concern about public understanding of overdiagnosis in breast cancer screening, and uncertainty about the likely impact on screening participation.Methods:In a population-based survey of 2272 women, we assessed understanding of overdiagnosis and screening intentions before and after exposure to an explanation of overdiagnosis, and one of the three information formats providing an estimate of the rate of overdiagnosis based on the findings of the UK Independent Review.Results:Subjective and objective comprehension of overdiagnosis was moderate across information formats (64% and 57%, respectively). Following overdiagnosis information, 7% of women showed a decrease in screening intention, with a stronger effect among women below screening age (<47 years), and receiving the estimate of the rate of overdiagnosis in a simple ratio format (one life saved to three overdiagnoses).Conclusions:Brief written information on overdiagnosis was incompletely understood, but reduced breast screening intentions in a proportion of women, regardless of comprehension. Subjective comprehension was lower among women who had not yet reached screening age but the deterrent effect was higher.

Socioeconomic inequalities in attitudes to cancer: an international cancer benchmarking study

Socioeconomic status (SES) differences in attitudes towards cancer have been implicated in the differential screening uptake and the timeliness of symptomatic presentation. However, the predominant emphasis of this work has been on cancer fatalism, and many studies focus on specific community subgroups. This study aimed to assess SES differences in positive and negative attitudes towards cancer in UK adults. A population-based sample of UK adults (n=6965, age≥50 years) completed the Awareness and Beliefs about Cancer scale, including six belief items: three positively framed (e.g. ‘Cancer can often be cured’) and three negatively framed (e.g. ‘A cancer diagnosis is a death sentence’). SES was indexed by education. Analyses controlled for sex, ethnicity, marital status, age, self-rated health, and cancer experience. There were few education-level differences for the positive statements, and overall agreement was high (all>90%). In contrast, there were strong differences for negative statements (all Ps<0.001). Among respondents with lower education levels, 57% agreed that ‘treatment is worse than cancer’, 27% that cancer is ‘a death sentence’ and 16% ‘would not want to know if I have cancer’. Among those with university education, the respective proportions were 34, 17 and 6%. Differences were not explained by cancer experience or health status. In conclusion, positive statements about cancer outcomes attract near-universal agreement. However, this optimistic perspective coexists alongside widespread fears about survival and treatment, especially among less-educated groups. Health education campaigns targeting socioeconomically disadvantaged groups might benefit from a focus on reducing negative attitudes, which is not necessarily achieved by promoting positive attitudes.

Socioeconomic inequalities in attitudes towards cancer: An international cancer benchmarking partnership study

Socioeconomic status (SES) differences in attitudes towards cancer have been implicated in the differential screening uptake and the timeliness of symptomatic presentation. However, the predominant emphasis of this work has been on cancer fatalism, and many studies focus on specific community subgroups. This study aimed to assess SES differences in positive and negative attitudes towards cancer in UK adults. A population-based sample of UK adults (n=6965, age≥50 years) completed the Awareness and Beliefs about Cancer scale, including six belief items: three positively framed (e.g. ‘Cancer can often be cured’) and three negatively framed (e.g. ‘A cancer diagnosis is a death sentence’). SES was indexed by education. Analyses controlled for sex, ethnicity, marital status, age, self-rated health, and cancer experience. There were few education-level differences for the positive statements, and overall agreement was high (all>90%). In contrast, there were strong differences for negative statements (all Ps<0.001). Among respondents with lower education levels, 57% agreed that ‘treatment is worse than cancer’, 27% that cancer is ‘a death sentence’ and 16% ‘would not want to know if I have cancer’. Among those with university education, the respective proportions were 34, 17 and 6%. Differences were not explained by cancer experience or health status. In conclusion, positive statements about cancer outcomes attract near-universal agreement. However, this optimistic perspective coexists alongside widespread fears about survival and treatment, especially among less-educated groups. Health education campaigns targeting socioeconomically disadvantaged groups might benefit from a focus on reducing negative attitudes, which is not necessarily achieved by promoting positive attitudes.

What prompts help-seeking for cancer ‘alarm' symptoms? A primary care based survey

Background:Encouraging prompt help-seeking for cancer symptoms can help shorten the patient interval and improve timely diagnosis. We explored factors associated with help-seeking in a primary care sample reporting ‘alarm’ symptoms.Methods:A questionnaire was mailed to 9771 adults (⩾50 years of age and no cancer diagnosis) and 3766 (39%) returned it. Our sample included 1732 adults reporting at least one cancer ‘alarm’ symptom; with a total of 2726 symptoms. Respondents completed questions relating to help-seeking, demographic and symptom characteristics (e.g., type, knowledge, concern, interference and attribution).Results:Over a third of people who reported a cancer ‘alarm’ symptom in the past 3 months had not sought help from a doctor. An unexplained lump (odds ratio (OR) 2.46, 1.42–4.26) and persistent unexplained pain (OR 1.79, 1.19–2.69) were associated with increased likelihood of help-seeking. Symptom concern (OR 3.10, 2.19–4.39) and interference (OR 3.06, 2.15–4.36) were associated with an increased likelihood of seeking help independently of symptom type. People who were not working (OR 1.41, 1.09–1.83), were married/cohabiting rather than single (OR 1.38, 1.10–1.74) and were older (60–69 years) rather than younger (50–59 years; OR 1.33, 1.02–1.75) were more likely to have sought help.Conclusions:Our findings highlighted symptom type and symptom characteristics as key drivers of help-seeking. We also found that there may be specific demographic groups where encouraging help-seeking might be warranted.

Smokers are less likely than non-smokers to seek help for a lung cancer ‘alarm’ symptom

Background The majority (>85%) of lung cancer cases are linked with smoking, and prognosis is poor because it is often diagnosed at a late stage. One contributor to late-stage diagnosis could be patient delay in help-seeking. We investigated the help-seeking behaviour of smokers and non-smokers for a recent lung cancer alarm symptom. Methods A health survey was sent to 4913 men and women aged >50 years through through General Practice. It included questions on symptoms experienced in the past 3 months (from a checklist), help-seeking (Yes/No) for each symptom and demographic characteristics including smoking status. Univariable and multivariable binary logistic regression analyses were used to assess the association between smoking status and help-seeking for a cough or hoarseness. Results Among 2042 participants (42% response rate), 280 (14%) reported ‘cough or hoarseness’ in the past 3 months; of whom 22% were current smokers. Being a smoker was associated with reduced likelihood of help-seeking (OR 0.44; 95% CI 0.23 to 0.83), even after adjusting for demographic factors (OR 0.46; 95% CI 0.21 to 1.00). Conclusions Delay in help-seeking in smokers for a symptom that is potentially indicative of lung cancer is a cause for concern. Future research could usefully address the psychological mechanisms through which help-seeking in smokers is hindered.

Low cancer suspicion following experience of a cancer 'warning sign'

Aim Lower socioeconomic status (SES) is associated with a higher risk of late-stage cancer diagnosis. A number of explanations have been advanced for this, but one which has attracted recent attention is lower patient knowledge of cancer warning signs, leading to delay in help-seeking. However, although there is psychometric evidence of SES differences in knowledge of cancer symptoms, no studies have examined differences in ‘cancer suspicion’ among people who are actually experiencing a classic warning sign. Methods A ‘health survey’ was mailed to 9771 adults (⩾50 years, no cancer diagnosis) with a symptom list including 10 cancer ‘warning signs’. Respondents were asked if they had experienced any of the symptoms in the past 3 months, and if so, were asked ‘what do you think caused it?’ Any mention of cancer was scored as ‘cancer suspicion’. SES was indexed by education. Results Nearly half the respondents (1732/3756) had experienced a ‘warning sign’, but only 63/1732 (3.6%) mentioned cancer as a possible cause. Lower education was associated with lower likelihood of cancer suspicion: 2.6% of respondents with school-only education versus 7.3% with university education suspected cancer as a possible cause. In multivariable analysis, low education was the only demographic variable independently associated with lower cancer suspicion (odds ratio (OR) = 0.34, confidence interval (CI): 0.20–0.59). Conclusion Levels of cancer suspicion were low overall in this community sample, and even lower in people from less educated backgrounds. This may hinder early symptomatic presentation and contribute to inequalities in stage at diagnosis.

Unintended consequences of an 'all-clear' diagnosis for potential cancer symptoms: a nested qualitative interview study with primary care patients.

Background Nine out of 10 patients undergoing urgent cancer investigations receive an ‘all-clear’ diagnosis. Aim A qualitative approach was used to evaluate the impact of investigations that did not result in cancer diagnosis on subsequent symptom attribution and help seeking for recurrent or new possible cancer symptoms. Design and setting A survey of symptoms, help seeking, and past investigations was sent to 4913 individuals aged ≥50 years from four UK general practices. Of 2042 responders, 62 participants were recruited still reporting at least one cancer ‘alarm’ symptom in a 3-month follow-up survey for a nested in-depth interview study (ensuring variation in sociodemographic characteristics). Method Framework analysis was used to examine the in-depth semi-structured interviews and identify themes related to previous health investigations. Results Interviewees were on average 65 years old, and 90% reported investigations within the previous 2 years. Most often they reported gastrointestinal, urinary, and respiratory symptoms, and 42% had waited ≥3 months before help seeking. Reassurance from a previous non-cancer diagnosis explained delays in help seeking even if symptoms persisted or new symptoms developed months or years later. Others were worried about appearing hypochondriacal or that they would not be taken seriously if they returned to the doctor. Conclusion An all-clear diagnosis can influence help seeking for months or even years in case of new or recurrent alarm symptoms. Considering the increasing number of people undergoing investigations and receiving an all-clear, it is paramount to limit unintended consequences by providing appropriate information and support. Specific issues are identified that could be addressed.