Personal and organisational health literacy in the non-specific symptom pathway for cancer: An ethnographic study.

INTRODUCTION: People being investigated for cancer face a wealth of complex information. Non-specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. METHODS: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. RESULTS: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. CONCLUSION: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help-seeking post-discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. PATIENT OR PUBLIC CONTRIBUTION: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.-A. M.) was involved in data analysis and writing the manuscript.

Assessing awareness of blood cancer symptoms and barriers to symptomatic presentation: measure development and results from a population survey in the UK.

BACKGROUND: Low levels of cancer awareness may contribute to delays in seeking medical help and subsequent delays in diagnosis. For blood cancer this may be a particularly prominent problem due to the high prevalence of undifferentiated symptoms such as bodily pain, weakness, nausea and weight loss, resulting in low symptom awareness. The delay is exacerbated by the dismissal of similar symptoms which are often interpreted as mild disease, resulting in multiple consultations prior to diagnosis. This study describes the development of a Cancer Awareness Measure for Blood Cancer (Blood CAM) and presents results from a population-representative survey using the measure. METHODS: A rapid systematic review identified constructs relevant to blood cancer. Items were taken from previous awareness measures and other literature and reviewed by expert groups including health care professionals and patients. Cognitive interviews were conducted with ten members of the public to check comprehension and clarity. A total sample of 434 participants completed the survey at Time 1 and n = 302 at Time 2 (two weeks later). RESULTS: Internal reliability was high across the different constructs included in the questionnaire (> 0.70) and test-retest reliability was moderate to good (0.49-0.79). The most commonly recognised blood cancer symptoms were unexplained weight loss (68.9%) and unexplained bleeding (64.9%) and the least commonly recognised symptoms were night sweats (31.3%) breathlessness and rash/itchy skin (both 44%). In terms of symptom experience, fatigue was the most commonly reported symptom (26.7%) followed by night sweats (25.4%). Exploratory factor analysis of barriers to presenting at primary care revealed three distinct categories of barriers; emotional, external/practical and service/healthcare professional related. Service and emotional barriers were most common. CONCLUSIONS: We developed a valid and reliable tool to assess blood cancer awareness and showed variable awareness of blood cancer symptoms which can help target public health campaigns. We also incorporated additional measures (e.g. confidence to re-consult, ability to understand symptoms) that could be used to tailor public messaging for blood cancer and for other harder to suspect and diagnose cancers.

The relationship between patient enablement and help-seeking in the context of blood cancer symptoms.

OBJECTIVE: Approaches to improve earlier diagnosis of cancer often focus on symptom awareness as a key driver of help-seeking behaviour and other psychological influences are less well understood. This is the first study to explore the role of patient enablement on help-seeking for people experiencing potential blood cancer symptoms. METHODS: A cross-sectional, nationally representative survey was completed by 434 respondents (>18 years). Questions asked about symptom experiences, medical help-seeking and re-consultation. Existing patient enablement items were included in the newly developed Blood Cancer Awareness Measure. We collected data on patient socio-demographic characteristics. RESULTS: Of those responding to the survey 224/434 (51.6%) reported experiencing at least one potential blood cancer symptom. Half of those experiencing symptoms (112/224) had sought medical help. Results from logistic regression analysis showed that higher scores on patient enablement were associated with being less likely to seek help (Odds Ratio [OR] 0.89, Confidence Interval [CI] 0.81-0.98) after controlling for socio-demographics. Separate analyses showed that higher enablement was associated with being more comfortable to re-consult if symptoms didn't go away or got worse (OR 1.31, CI 1.16-1.48); after a test result suggested there was nothing to worry about, but symptoms persisted (OR 1.23, CI 1.12-1.34) or to request further tests, scans or investigations (OR 1.31, CI 1.19-1.44). CONCLUSIONS: Contrary to our hypotheses, patient enablement was associated with lower likelihood of help-seeking for potential blood cancer symptoms. Yet enablement appears to play an important role in likelihood of re-consulting when symptoms persist, get worse or need further investigation.

Barriers to colonoscopy in UK colorectal cancer screening programmes: Qualitative interviews with ethnic minority groups.

OBJECTIVE: People from ethnic minority backgrounds are less likely to attend colonoscopy, following faecal immunochemical test screening, and are more likely to be diagnosed with colorectal cancer at an advanced stage as a result. The aim of this research was to explore the barriers and facilitators to attending colonoscopy, perceived by ethnic minority groups living in the United Kingdom. METHODS: Semi-structured online and telephone interviews were conducted with thirty men and women of Black-African (n = 5), Black-Caribbean (n = 5), South Asian (n = 10) and White British (n = 10) descent. Participants were eligible for screening, but had not necessarily been invited for colonoscopy. All interviews were conducted in the participant's first language and were assessed using Framework-analysis, in line with a conceptual framework developed from previous interviews with healthcare professionals. RESULTS: Five thematic groups of barriers and facilitators were developed: 'Locus of control', 'Cultural attitudes and beliefs', 'Individual beliefs, knowledge and personal experiences with colonoscopy and cancer', 'Reliance on family and friends' and 'Health concerns'. Differences were observed, between ethnic groups, for: 'Locus of control', 'Cultural attitudes and beliefs' and 'Reliance on family and friends'. Black and South Asian participants frequently described the decision to attend colonoscopy as lying with 'God' (Muslims, specifically), 'the doctor', or 'family' (Locus of control). Black and South Asian participants also reported relying on friends and family for 'language, transport and emotional support' (Reliance on family and friends). Black-African participants, specifically, described cancer as 'socially taboo' (Cultural attitudes and beliefs). CONCLUSIONS: The results highlight several targets for culturally-tailored interventions to make colonoscopy more equitable.

Healthcare Professional and Patient Perceptions of Changes in Colorectal Cancer Care Delivery During the COVID-19 Pandemic and Impact on Health Inequalities.

BACKGROUND: The COVID-19 pandemic changed the way in which people were diagnosed and treated for cancer. We explored healthcare professional and patient perceptions of the main changes to colorectal cancer delivery during the COVID-19 pandemic and how they impacted on socioeconomic inequalities in care. METHODS: In 2020, using a qualitative approach, we interviewed patients (n = 15) who accessed primary care with colorectal cancer symptoms and were referred for further investigations. In 2021, we interviewed a wide range of healthcare professionals (n = 30) across the cancer care pathway and gathered national and local documents/guidelines regarding changes in colorectal cancer care. RESULTS: Changes with the potential to exacerbate inequalities in care, included: the move to remote consultations; changes in symptomatic triage, new COVID testing procedures/ways to access healthcare, changes in visitor policies and treatment (e.g., shorter course radiotherapy). Changes that improved patient access/convenience or the diagnostic process have the potential to reduce inequalities in care. DISCUSSION: Changes in healthcare delivery during the COVID-19 pandemic have the ongoing potential to exacerbate existing health inequalities due to changes in how patients are triaged, changes to diagnostic and disease management processes, reduced social support available to patients and potential over-reliance on digital first approaches. We provide several recommendations to help mitigate these harms, whilst harnessing the gains.

What are the similarities and differences in lung cancer symptom appraisal and help-seeking according to smoking status? A qualitative study with lung cancer patients.

OBJECTIVE: Lung cancer in never-smokers represents a growing proportion of patients. The relationship between smoking status, symptom appraisal and help-seeking behaviour is complex. Little is known about cancer symptom-related health behaviours according to smoking status. The aim of the study was to explore lung cancer patients' experiences of a lung cancer diagnosis, identifying differences by smoking history. METHOD: This was a qualitative study involving telephone interviews with 40 lung cancer patients (20 never smokers, 11 former smokers and 9 current smokers). We used framework analysis to analyse the data using the Common Sense Model of Illness Self-Regulation as a theoretical framework, developed after initial analysis. RESULTS: All patients were likely to delay seeking help for symptoms in primary care regardless of smoking history, but for different reasons. Smoking history was instrumental to how individuals perceived and responded to early symptoms of lung cancer. Differences in interpretation and coping responses to new symptoms seemed to be caused by the higher presence of comorbidities due to smoking, and perceptions of the current state of health. Individuals with a smoking history reported acting with urgency in seeking help and follow up, whereas patients who experienced low levels of concern were more easily reassured by clinicians, resulting in delays. CONCLUSIONS: Never and former smokers perceive, interpret, and respond to symptoms of lung cancer differently to smokers. However, few people attribute their lung symptoms to cancer initially, even with a smoking history. Interventions that drive increased urgency and vigilance in never smokers may be effective.

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.

Adapting a breast cancer early presentation intervention for Black women: A focus group study with women of Black African and Black Caribbean descent in the United Kingdom.

OBJECTIVE: Black women in the United Kingdom are more likely than White women to be diagnosed with advanced breast cancer and have lower survival rates. We consulted women of Black Caribbean and Black African descent in the United Kingdom on how the Promoting Early Presentation (PEP) booklet and intervention could be adapted for Black women to promote early presentation with breast cancer symptoms. METHODS: Focus groups with 22 women of Black African and Black Caribbean descent, of whom five had been treated for breast cancer. The participants were recruited from a large UK breast cancer charity and community settings. Data were analysed using Framework Analysis. RESULTS: Four themes summarised the participants' views on how the booklet and intervention could be adapted: Justify the focus on Black women, Black people do not talk about cancer, Make interventions inclusive and engaging, and Engage Black communities to deliver interventions. CONCLUSION: Breast cancer behaviour change interventions need to be more inclusive, illustrate how breast cancer symptoms manifest on black skin, and emphasise that breast cancer is curable to increase awareness and reduce cancer fear. Researchers should involve Black communities in the design and delivery of interventions to address appropriately cultural barriers to early presentation.

How does social context influence appraisal and help-seeking for potential cancer symptoms in adults aged 50 and over? A qualitative interview study.

OBJECTIVE: To investigate how social context and social network activation influence appraisal and help-seeking for symptoms potentially indicative of cancer. METHODS: Semi-structured telephone interview study. Community dwelling adults who had experienced at least one symptom potentially indicative of cancer within the last month were sampled from a national symptom survey. RESULTS: Thirty-four interviews were conducted. Participants looked to peers and wider society to judge whether symptoms might be normal for their age. Involvement of others in symptom appraisal promoted an active management strategy, such as contacting a healthcare professional or trying a medication. There were practical, emotional, attitudinal, normative and moral barriers to involving others. Cancer narratives from significant others, public health campaigns and the media influenced symptom appraisal. Participants held mental representations of types of people who get cancer, for example, smokers and unfit people. This had two consequences. First, participants did not identify themselves as a candidate for cancer; impeding help-seeking. Second, social judgements about lifestyle introduced stigma. CONCLUSION: Involving friends/family in symptom appraisal facilitates help-seeking but barriers exist to involving others. Campaigns to promote earlier cancer diagnosis should incorporate age-appropriate narratives, address misconceptions about 'types' of people who get cancer and tackle stigma about lifestyle factors.

Health behaviour change among UK adults during the pandemic: findings from the COVID-19 cancer attitudes and behaviours study.

BACKGROUND: COVID-19 related lockdowns may have affected engagement in health behaviours among the UK adult population. This prospective observational study assessed socio-demographic patterning in attempts to change and maintain a range of health behaviours and changes between two time points during the pandemic. METHODS: Adults aged 18 years and over (n = 4,978) were recruited using Dynata (an online market research platform) and the HealthWise Wales platform, supplemented through social media advertising. Online surveys were conducted in August/September 2020 when lockdown restrictions eased in the UK following the first major UK lockdown (survey phase 1) and in February/March 2021 during a further national lockdown (survey phase 2). Measures derived from the Cancer Awareness Measure included self-reported attempts to reduce alcohol consumption, increase fruit/vegetable consumption, increase physical activity, lose weight and reduce/stop smoking. Multivariable logistic regressions were used to assess individual health behaviour change attempts over time, adjusted for age, sex, ethnicity, employment and education. RESULTS: Around half of participants in survey phase 1 reported trying to increase physical activity (n = 2607, 52.4%), increase fruit/vegetables (n = 2445, 49.1%) and lose weight (n = 2413, 48.5%), with 19.0% (n = 948) trying to reduce alcohol consumption among people who drink. Among the 738 participants who smoked, 51.5% (n = 380) were trying to reduce and 27.4% (n = 202) to stop smoking completely. Most behaviour change attempts were more common among women, younger adults and minority ethnic group participants. Efforts to reduce smoking (aOR: 0.98, 95% CI: 0.82-1.17) and stop smoking (aOR: 0.98, 95% CI: 0.80-1.20) did not differ significantly in phase 2 compared to phase 1. Similarly, changes over time in attempts to improve other health behaviours were not statistically significant: physical activity (aOR: 1.07; 95% CI: 0.99-1.16); weight loss (aOR: 0.95; 95% CI: 0.90-1.00); fruit/vegetable intake (aOR: 0.98, 95% CI: 0.91-1.06) and alcohol use (aOR: 1.32, 95% CI: 0.92-1.91). CONCLUSION: A substantial proportion of participants reported attempts to change health behaviours in the initial survey phase. However, the lack of change observed over time indicated that overall motivation to engage in healthy behaviours was sustained among the UK adult population, from a period shortly after the first lockdown toward the end of the second prolonged lockdown.

Patient barriers and facilitators of colonoscopy use: A rapid systematic review and thematic synthesis of the qualitative literature.

Colonoscopy is the gold standard test in the diagnosis of colorectal cancer. Despite this, many people across the world decline the procedure when invited for screening, surveillance or diagnostic evaluation. The aim of this review was to characterise the barriers and facilitators of colonoscopy use described in the qualitative literature. We searched PubMed and PsychInfo for studies that explored barriers and facilitators of colonoscopy use. To determine the eligibility of studies, we first reviewed titles, then abstracts, and finally the full paper. We started with a narrow search, which we expanded successively, until the number of new publications eligible after abstract review was <1% of the total number of publications identified. Papers were eligible if they: 1) focussed on an adult population, 2) used a qualitative research design and, 3) described at least one patient-related theme regarding colonoscopy use. We then extracted qualitative data from eligible papers and analysed using thematic synthesis. Fifty-seven studies met the inclusion criteria. Most explored barriers and facilitators of screening colonoscopy (n=53, 93.0%) and were conducted in the USA (n=48, 84.2%). Key psychological and social factors included: 'fear of pain and discomfort', 'concerns about doing the bowel preparation', and whether the test was recommended by the patient's physician. Key practical factors included cost, and whether colonoscopy was covered by the patient's healthcare insurance. Studies mostly focussed on screening colonoscopy in the USA, where there is no universal healthcare coverage. To better understand the barriers and facilitators in other contexts, further research is needed.

Intentions to participate in cervical and colorectal cancer screening during the COVID-19 pandemic: A mixed-methods study.

Worldwide, cancer screening faced significant disruption in 2020 due to the COVID-19 pandemic. If this has led to changes in public attitudes towards screening and reduced intention to participate, there is a risk of long-term adverse impact on cancer outcomes. In this study, we examined previous participation and future intentions to take part in cervical and colorectal cancer (CRC) screening following the first national lockdown in the UK. Overall, 7543 adults were recruited to a cross-sectional online survey in August-September 2020. Logistic regression analyses were used to identify correlates of strong screening intentions among 2319 participants eligible for cervical screening and 2502 eligible for home-based CRC screening. Qualitative interviews were conducted with a sub-sample of 30 participants. Verbatim transcripts were analysed thematically. Of those eligible, 74% of survey participants intended to attend cervical screening and 84% intended to complete home-based CRC screening when next invited. Thirty percent and 19% of the cervical and CRC samples respectively said they were less likely to attend a cancer screening appointment now than before the pandemic. Previous non-participation was the strongest predictor of low intentions for cervical (aOR 26.31, 95% CI: 17.61-39.30) and CRC (aOR 67.68, 95% CI: 33.91-135.06) screening. Interview participants expressed concerns about visiting healthcare settings but were keen to participate when screening programmes resumed. Intentions to participate in future screening were high and strongly associated with previous engagement in both programmes. As screening services recover, it will be important to monitor participation and to ensure people feel safe to attend.

Validation of self-reported help-seeking, and measurement of the patient interval, for cancer symptoms: an observational study to inform methodological challenges in symptomatic presentation research.

BACKGROUND: To improve earlier presentation with potential symptoms of cancer, accurate data are needed on how people respond to these symptoms. It is currently unclear how self-reported medical help-seeking for symptoms associated with cancer by people from the community correspond to what is recorded in their general practice records, or how well the patient interval (time from symptom onset to first presentation to a health-professional) can be estimated from patient records. METHOD: Data from two studies that reviewed general practice electronic records of residents in Scotland, (i) the 'Useful Study': respondents to a general population survey who reported experiencing symptoms potentially associated with one of four common cancers (breast, colorectal, lung and upper gastro-intestinal) and (ii) the 'Detect Cancer Early' programme: cancer patients with one of the same four cancers. Survey respondents' self-reported help-seeking (yes/no) was corroborated; Cohen's Kappa assessed level of agreement. Combined data on the patient interval were evaluated using descriptive analysis. RESULTS: 'Useful Study' respondents' self-report of help-seeking showed exact correspondence with general practice electronic records in 72% of cases (n = 136, kappa 0.453, moderate agreement). Between both studies, 1269 patient records from 35 general practices were reviewed. The patient interval could not be determined in 44% (n = 809) of symptoms presented by these individuals. CONCLUSIONS: Patient self-report of help-seeking for symptoms potentially associated with cancer offer a reasonably accurate method to research responses to these symptoms. Incomplete patient interval data suggest routine general practice records are unreliable for measuring this important part of the patient's symptom journey.

Ethnic differences in barriers to symptomatic presentation in primary care: A survey of women in England.

OBJECTIVE: The majority of cancers are diagnosed following a decision to access medical help for symptoms. People from ethnic minority backgrounds have longer patient intervals following identification of cancer symptoms. This study quantified ethnic differences in barriers to symptomatic presentation including culturally specific barriers. Correlates of barriers (eg, migration status, health literacy, and fatalism) were also explored. METHODS: A cross-sectional survey of 720 White British, Caribbean, African, Indian, Pakistani, and Bangladeshi women aged 30 to 60 (n = 120/group) was carried out in England. Barrier items were taken from the widely used cancer awareness measure; additional culturally specific barriers to symptomatic presentation were included following qualitative work (11 barriers in total). Migration status, health literacy, and fatalism were included as correlates to help-seeking barriers. RESULTS: Ethnic minority women reported a higher number of barriers (P < .001, 2.6-3.8 more than White British women). Emotional barriers were particularly prominent. Women from ethnic minority groups were more likely to report "praying about a symptom" (P < .001, except Bangladeshi women) and "using traditional remedies" (P < .001, except Caribbean women). Among ethnic minority women, adult migration to the United Kingdom, low health literacy, and high fatalistic beliefs increased likelihood of reporting barriers to symptomatic presentation. For example, women who migrated as adults were more likely to be embarrassed (OR = 1.83; CI, 1.06-3.15), worry what the GP might find (OR = 1.91; CI, 1.12-3.26), and be low on body vigilance (OR = 4.44; CI, 2.72-7.23). CONCLUSIONS: Campaigns addressing barriers to symptomatic presentation among ethnic minority women should be designed to reach low health literacy populations and include messages challenging fatalistic views. These would be valuable for reducing ethnic inequalities in cancer outcomes.

Lung cancer symptom appraisal among people with chronic obstructive pulmonary disease: A qualitative interview study.

OBJECTIVE: The incidence of lung cancer is four times higher in people with chronic obstructive pulmonary disease (COPD) compared with the general population. Promotion of a shorter time from symptom onset to presentation is one potential strategy for earlier lung cancer diagnosis, but distinguishing respiratory symptoms can be difficult. We investigated how the experience of COPD influences symptom appraisal and help seeking for potential lung cancer symptoms. METHODS: We conducted qualitative interviews with men (n = 17) and women (n = 23) aged 40 to 83 years with COPD. Topic guides drew on the integrated symptom-response framework and covered symptom experience, interpretation, action, recognition, help seeking, evaluation, and reevaluation. We used the framework method to analyse the data. RESULTS: Participants said that they attributed chest symptoms to their COPD; no other cause was considered. Participants said that family/friends noticed changes in their symptoms and encouraged help seeking. Others felt isolated by their COPD because they could not get out, were fatigued, or were embarrassed. Participants visited health professionals frequently, but increased risk of lung cancer was not discussed. CONCLUSIONS: Our study provides insight into different levels of influence on symptom appraisal and targets for intervention. Greater awareness of increased lung cancer risk and support to act on symptom changes is essential and could be achieved through a concerted information campaign. Health professionals working with people with COPD could also optimise appointments to support symptom appraisal of potential lung cancer symptoms.

Online Information-Seeking About Potential Breast Cancer Symptoms: Capturing Online Behavior With an Internet Browsing Tracking Tool.

BACKGROUND: People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process. OBJECTIVE: We explored women's symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participant online searches and visited websites, the Vizzata browser tracker. METHODS: An online survey was completed by 56 cancer-free women (mean age 60.34 [SD 7.73] years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (T1) and again after seeking information online (T2). The online tracking tool, embedded in the survey, was used to capture in real time participant search terms and accessed websites. RESULTS: The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (10/56, 18%), there was evidence of engagement in online information-seeking (eg, medical terminology and cancer attribution at T2) despite their searching activity not being recorded. A total of 25 participants considered cancer as a potential cause for the nipple rash at T1, yet only one of these used cancer as a search term. Most participants (40/46, 87%) used rash-related search terms, particularly nipple rash and rash on nipple. The majority (41/46, 89%) accessed websites containing breast cancer information, with the National Health Service webpage "Paget disease of the nipple" being the most visited one. At T2, after engaging in the internet search task, more participants attributed the nipple rash to breast cancer than at T1 (37/46, 66% vs 25/46, 45%), although a small number of participants (6/46) changed from making a cancer attribution at T1 to a noncancer one at T2. CONCLUSIONS: Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms.

Is lower symptom recognition associated with socioeconomic inequalities in help-seeking for potential breast cancer symptoms?

OBJECTIVE: Socioeconomic inequalities in recognising signs and symptoms of cancer may result in inequalities in timely help-seeking and subsequent prognosis of breast cancer. We explored the mediating role of symptom attribution and concern on the relationship between level of education and help-seeking for potential breast cancer symptoms. METHODS: Women aged ≥47 years (n = 961) were purposively recruited (by education) to complete an online vignette-based survey that included nipple rash and axillary lump (in separate vignettes) as potential symptoms of breast cancer. Women completed questions relating to medical help-seeking (yes/no), cancer attribution, symptom concern, cancer avoidance, family history, and demographics. RESULTS: Women with low education and mid education attributed nipple rash less often to cancer (26% and 27% mentioned cancer) than women with a degree or higher (40%). However, women with a degree or higher (63%) or mid education (64%) were less likely to anticipate seeking help for the nipple rash than women with no formal qualifications (73%). This association was statistically significant in the 60- to 69-year-old age group. There was no significant association between education and help-seeking for axillary lump. Mediation analysis adjusting for potential confounders confirmed that the association between education and help-seeking for nipple rash was fully mediated by symptom concern. CONCLUSIONS: Socioeconomic inequalities in stage at diagnosis and survival of breast cancer may not always be explained by lower likelihood of suspecting cancer and subsequent impact on help-seeking. Reducing inequalities in stage at diagnosis will involve understanding a broader range of bio-psycho-social factors (eg, comorbidities and healthcare system factors).

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.

Using the candidacy framework to understand how doctor-patient interactions influence perceived eligibility to seek help for cancer alarm symptoms: a qualitative interview study.

BACKGROUND: 'Candidacy' is concerned with the way people consider their eligibility for accessing health services. We used the Candidacy Framework to explore how the doctor-patient relationship can influence perceived eligibility to visit their General Practitioner (GP) among people experiencing cancer alarm symptoms. METHODS: We carried out a secondary analysis of qualitative interviews with 29 women and 33 men, aged ≥50 years experiencing cancer alarm symptoms, recruited through primary care. Interviews focused on symptom experience, help-seeking and primary care use. Framework analysis was used to analyse transcripts with a focus on GP-patient interactions. RESULTS: Perceived (im)permeability of services acted as a barrier to help-seeking, due to limited availability of appointments, time-limited communication and difficulties asserting candidacy. There was also a focal role of communication in building a positive doctor-patient relationship, with some participants describing resisting offers of appointments as a result of previous negative GP adjudication. These factors not only influenced the current consultation but had longer-term consequences for future consultation. CONCLUSIONS: Candidacy provides a valuable theoretical framework to understand the interactional factors of the doctor-patient relationship which influence perceived eligibility to seek help for possible cancer alarm symptoms. We have highlighted areas for targeted interventions to improve patient-centred care and improve earlier diagnosis.

Educational differences in likelihood of attributing breast symptoms to cancer: a vignette-based study.

BACKGROUND: Stage at diagnosis of breast cancer varies by socio-economic status (SES), with lower SES associated with poorer survival. We investigated associations between SES (indexed by education), and the likelihood of attributing breast symptoms to breast cancer. METHOD: We conducted an online survey with 961 women (47-92 years) with variable educational levels. Two vignettes depicted familiar and unfamiliar breast changes (axillary lump and nipple rash). Without making breast cancer explicit, women were asked 'What do you think this […..] could be?' After the attribution question, women were asked to indicate their level of agreement with a cancer avoidance statement ('I would not want to know if I have breast cancer'). RESULTS: Women were more likely to mention cancer as a possible cause of an axillary lump (64%) compared with nipple rash (30%). In multivariable analysis, low and mid education were independently associated with being less likely to attribute a nipple rash to cancer (OR 0.51, 0.36-0.73 and OR 0.55, 0.40-0.77, respectively). For axillary lump, low education was associated with lower likelihood of mentioning cancer as a possible cause (OR 0.58, 0.41-0.83). Although cancer avoidance was also associated with lower education, the association between education and lower likelihood of making a cancer attribution was independent. CONCLUSION: Lower education was associated with lower likelihood of making cancer attributions for both symptoms, also after adjustment for cancer avoidance. Lower likelihood of considering cancer may delay symptomatic presentation and contribute to educational differences in stage at diagnosis. Copyright © 2016 John Wiley & Sons, Ltd.