Over-reassurance and undersupport after a 'false alarm': a systematic review of the impact on subsequent cancer symptom attribution and help seeking

This literature review examined research into the impact of a previous 'all-clear' or non-cancer diagnosis following symptomatic presentation ('false alarm') on symptom attribution and delays in help seeking for subsequent possible cancer symptoms

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

Delay in help seeking for cancer 'alarm' symptoms has been identified as a contributor to delayed diagnosis

Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study.

Objectives: To explore the influence of overdiagnosis information on women’s decisions about mammography. Design: A qualitative focus group study with purposive sampling and thematic analysis, in which overdiagnosis information was presented. Setting: Community and university settings in London. Participants: 40 women within the breast screening age range (50–71 years) including attenders and nonattenders were recruited using a recruitment agency as well as convenience sampling methods. Results: Women expressed surprise at the possible extent of overdiagnosis and recognised the information as important, although many struggled to interpret the numerical data. Overdiagnosis was viewed as less personally relevant than the possibility of ‘under diagnosis’ (false negatives), and often considered to be an issue for follow-up care decisions rather than screening participation. Women also expressed concern that information on overdiagnosis could deter others from attending screening, although they rarely saw it as a deterrent. After discussing overdiagnosis, few women felt that they would make different decisions about breast screening in the future. Conclusions: Women regard it as important to be informed about overdiagnosis to get a complete picture of the risks and benefits of mammography, but the results of this study indicate that understanding overdiagnosis may not always influence women’s attitudes towards participation in breast screening. The results also highlight the challenge of communicating the individual significance of information derived from population-level modelling

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

Do comorbidities influence help-seeking for cancer alarm symptoms? A population-based survey in England

Background: We examined associations between different chronic morbidities and help-seeking for possible cancer symptoms. / Methods: Postal survey of individuals aged>50 years in England. Participants could report prior morbidities in respect of 12 pre-defined conditions. Among patients experiencing possible cancer symptoms we examined associations between specific morbidities and self-reported help-seeking (i.e. contacted versus not contacted a GP) for each alarm symptom using regression analyses. / Results: Among 2042 respondents (42% response rate), 936 (46%) recently experienced one of 14 possible cancer symptoms considered in our analysis. Of them, 80% reported one or more morbidities, most frequently hypertension/hypercholesterolemia (40%), osteomuscular (36%) and heart diseases (21%). After adjustment for socio-demographic characteristics, patients with hypertension/hypercholesterolemia were more likely to report help-seeking for possible cancer symptoms, such as unexplained cough (OR=2.0; 95%CI 1.1-3.5), pain (OR=2.2; 95%CI 1.0-4.5) and abdominal bloating (OR=2.3; 95%CI 1.1-4.8). Urinary morbidity was associated with increased help-seeking for abdominal bloating (OR=5.4; 95%CI 1.2-23.7) or rectal bleeding (OR=5.8; 95%CI 1.4-23.8). In contrast, heart problems reduced help-seeking for change in bowel habits (OR=0.4; 95%CI 0.2-1.0). / Conclusions: Comorbidities are common and may facilitate help-seeking for possible cancer symptoms, but associations vary for specific symptom-comorbidity pairs. The findings can contribute to the design of future cancer symptom awareness campaigns

The impact of body vigilance on help-seeking for cancer 'alarm' symptoms: a community-based survey.

BACKGROUND: The act of detecting bodily changes is a pre-requisite for subsequent responses to symptoms, such as seeking medical help. This is the first study to explore associations between self-reported body vigilance and help-seeking in a community sample currently experiencing cancer 'alarm' symptoms. METHODS: Using a cross-sectional study design, a 'health survey' was mailed through primary care practices to 4913 UK adults (age ≥50 years, no cancer diagnosis), asking about symptom experiences and medical help-seeking over the previous three months. Body vigilance, cancer worry and current illness were assessed with a small number of self-report items derived from existing measures. RESULTS: The response rate was 42% (N = 2042). Almost half the respondents (936/2042; 46%) experienced at least one cancer alarm symptom. Results from logistic regression analysis revealed that paying more attention to bodily changes was significantly associated with help-seeking for cancer symptoms (OR = 1.44; 1.06-1.97), after controlling for socio-demographics, current illness and cancer worry. Being more sensitive to bodily changes was not significantly associated with help-seeking. CONCLUSIONS: Respondents who paid attention to their bodily changes were more likely to seek help for their symptoms. Although the use of a cross-sectional study design and the limited assessment of key variables preclude any firm conclusions, encouraging people to be body vigilant may contribute towards earlier cancer diagnosis. More needs to be understood about the impact this might have on cancer-related anxiety

The Role of Smoking Status in Making Risk-Informed Diagnostic Decisions in the Lung Cancer Pathway: A Qualitative Study of Health Care Professionals and Patients.

BACKGROUND: Lung cancer clinical guidelines and risk tools often rely on smoking history as a significant risk factor. However, never-smokers make up 14% of the lung cancer population, and this proportion is rising. Consequently, they are often perceived as low-risk and may experience diagnostic delays. This study aimed to explore how clinicians make risk-informed diagnostic decisions for never-smokers. METHODS: Qualitative interviews were conducted with 10 lung cancer diagnosticians, supported by data from interviews with 20 never-smoker lung cancer patients. The data were analyzed using a framework analysis based on the Model of Pathways to Treatment framework and data-driven interpretations. RESULTS: Participants described 3 main strategies for making risk-informed decisions incorporating smoking status: guidelines, heuristics, and potential harms. Clinicians supplemented guidelines with their own heuristics for never-smokers, such as using higher thresholds for chest X-ray. Decisions were easier for patients with high-risk symptoms such as hemoptysis. Clinicians worried about overinvestigating never-smoker patients, particularly in terms of physical and psychological harms from invasive procedures or radiation. To minimize unnecessary anxiety about lung cancer risk, clinicians made efforts to downplay this. Conversely, some patients found that this caused process harms such as delays and miscommunications. CONCLUSION: Improved guidance and methods of risk differentiation for never-smokers are needed to avoid diagnostic delays, overreassurance, and clinical pessimism. This requires an improved evidence base and initiatives to increase awareness among clinicians of the incidence of lung cancer in never-smokers. As the proportion of never-smoker patients increases, this issue will become more urgent. HIGHLIGHTS: Smoking status is the most common risk factor used by clinicians to guide decision making, and guidelines often focus on this factor.Some clinicians also use their own heuristics for never-smokers, and this becomes particularly relevant for patients with lower risk symptoms.Clinicians are also concerned about the potential harms and risks associated with deploying resources on diagnostics for never-smokers.Some patients find it difficult to decide whether or not to go ahead with certain procedures due to efforts made by clinicians to downplay the risk of lung cancer.Overall, the study highlights the complex interplay between smoking history, clinical decision making, and patient anxiety in the context of lung cancer diagnosis and treatment

Lung cancer symptom appraisal, help-seeking and diagnosis - rapid systematic review of differences between patients with and without a smoking history

BACKGROUND: Lung cancer is the leading cause of cancer death in the world. A significant minority of lung cancer patients have never smoked (14% in the UK, and ranging from 10% to 25% worldwide). Current evidence suggests that never-smokers encounter delays during the diagnostic pathway, yet it is unclear how their experiences and reasons for delayed diagnoses differ from those of current and former smokers. This rapid review assessed literature about patient experiences in relation to symptom awareness and appraisal, help-seeking, and the lung cancer diagnostic pathway, comparing patients with and without a smoking history. METHODS: MEDLINE, PsychINFO and Google Scholar were searched for studies (2010-2020) that investigated experiences of the pathway to diagnosis for patients with and without a smoking history. Findings are presented using a narrative synthesis. RESULTS: Analysis of seven quantitative and three qualitative studies revealed that some delays during symptom appraisal and diagnosis are unique to never-smokers. Due to the strong link between smoking and lung cancer, and low awareness of non-smoking related lung cancer risk factors and symptoms, never-smokers do not perceive themselves to be at risk. Never-smokers are also likely to evaluate their experiences in comparison with other non-smoking related cancers, where prognosis is likely better, potentially leading to lower satisfaction with healthcare. CONCLUSION: Never-smokers appear to have different experiences in relation to symptom appraisal and diagnosis. However, evidence in relation to help-seeking, and what is driving diagnostic delays for never-smoker patients specifically is lacking

Do comorbidities influence help-seeking for cancer alarm symptoms? A population-based survey in England

Background: We examined associations between different chronic morbidities and help-seeking for possible cancer symptoms. Methods: Postal survey of individuals aged >50 years in England. Participants could report prior morbidities in respect of 12 pre-defined conditions. Among patients experiencing possible cancer symptoms we examined associations between specific morbidities and self-reported help-seeking (i.e. contacted versus not contacted a GP) for each alarm symptom using regression analyses. Results: Among 2042 respondents (42% response rate), 936 (46%) recently experienced 1 of 14 possible cancer symptoms considered in our analysis. Of them, 80% reported one or more morbidities, most frequently hypertension/hypercholesterolemia (40%), osteomuscular (36%) and heart diseases (21%). After adjustment for socio-demographic characteristics, patients with hypertension/hypercholesterolemia were more likely to report help-seeking for possible cancer symptoms, such as unexplained cough (OR = 2.0; 95% confidence interval (CI) 1.1-3.5), pain (OR = 2.2; 95% CI 1.0-4.5) and abdominal bloating (OR = 2.3; 95% CI 1.1-4.8). Urinary morbidity was associated with increased help-seeking for abdominal bloating (OR = 5.4; 95% CI 1.2-23.7) or rectal bleeding (OR = 5.8; 95% CI 1.4-23.8). In contrast, heart problems reduced help-seeking for change in bowel habits (OR = 0.4; 95% CI 0.2-1.0). Conclusions: Comorbidities are common and may facilitate help-seeking for possible cancer symptoms, but associations vary for specific symptom-comorbidity pairs. The findings can contribute to the design of future cancer symptom awareness campaigns.This work was part of the programme of the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis. The Policy Research Unit in Cancer Awareness, Screening, and Early Diagnosis receives funding for a research programme from the Department of Health Policy Research Programme. It is a collaboration between researchers from seven institutions (Queen Mary University of London, University College London, King’s College London, London School of Hygiene and Tropical Medicine, Hull York Medical School, Durham University and Peninsula Medical School). GL and TS were supported by Cancer Research UK Advanced Clinician Scientist Fellowship (C18081/A18180)