Katriina Whitaker is Lead for Cancer Care in the School of Health Sciences at the University of Surrey. Katriina was awarded a prestigious Cancer Research UK fellowship to explore cancer symptom appraisal in everyday life. Her ongoing programme of work focuses on early diagnosis and cancer, with a particular interest in healthcare-seeking and health inequalities.
Katriina is a Chartered Psychologist and was made a Fellow of the British Psychological Society in 2017. Katriina is an expert review panel member for Cancer Research UK's Early Diagnosis & Detection Trials, Behavioural Health System and Health Economics research panel and Tenovus Cancer Care Psychosocial Advisory Committee. She also sits on the Editorial Boards for the European Journal of Cancer Care and acts as a Review Editor for Frontiers in Psychology.
25 FEB 2021
Nearly half of people with potential cancer symptoms in first wave of pandemic did not contact GP, study finds
20 NOV 2020
Covid-19 may have changed the way people have been diagnosed with cancer and how they receive care – new study to investigate
- Early diagnosis and cancer
- Cancer knowledge, attitudes and beliefs
- Health psychology
- Health inequalities
- Impact of COVID-19 on early diagnosis and cancer care
Co-investigator/Workstream 2 Lead. Blood Cancer UK. February 2021-January 2023. PI (UCL Georgia Black). With co-investigators Dr Jenny Harris, Dr Sandra Van Os, Dr Afsana Bhuiya
Principal Investigator. Health Foundation. October 2020-October 2021. With co-investigators Professor Cath Taylor, Professor Naomi Fulop, Dr Georgia Black, Dr Cecilia Vindrola.
Co-investigator. UKRI. June 2020-December 2021. With Professor Kate Brain (PI) andDr Jo Waller, Professor Graham Moore, Dr Victoria Whitelock
Katie Robb (University of Glasgow)
Jo Waller (King's College London)
Georgia Black (University College London)
Peter Vedsted (Aarhus University, Denmark)
Yoryos Lyratzopoulos (University College London)
Una Macleod (Hull York Medical School)
Fiona Walter (University of Cambridge)
Peter Murchie (University of Aberdeen)
Kate Brain (University of Cardiff)
Naomi Fulop (University College London)
Cecilia Vindrola (University College London)
Hardeep Singh (Baylor College of Medicine)
Indicators of esteem
March 2021-current. Expert panel member, Cancer Research UK's Early Detection & Diagnosis Research Committee
January 2018-January 2020: Chair of the National Cancer Research Institute (NCRI) Primary Care Early Diagnosis sub-group.
February 2017- current. Fellow of the British Psychological Society (BPS)
May 2016-May 2019. Member of the Psycho-Oncology Journal Affiliate Editorial Board
February 2016-current. Member of the National Cancer Research Institute (NCRI) Primary Care Clinical Study Group (CSG).
April 2015-Janaury 2020: Expert Panel Member, Early Diagnosis Panel of Population Research Committee, Cancer Research UK.
April 2015-current: Committee member of IPOS Communications and Publications Committee.
March 2015-current: Editorial Board Member, European Journal of Cancer Care.
November 2014-current: Honorary Senior Research Fellow, Epidemiology and Public Health, University College London.
November 2013-current: Scholar, Editorial Board, British Journal of Health Psychology
Jan 2012-current: Chartered member (CPsychol) of British Psychological Society (BPS).
- Understanding primary care nurses’ contribution to cancer early diagnosis (Hanna Skrobanski; supervised by Katriina Whitaker and Emma Ream)
- The role of illness-related rumination in psychological and physical health outcomes in those living with cancer (Sarah Beck; supervised by Mark Cropley, Simon Evans and Katriina Whitaker)
- Understanding socioeconomic differences in breast cancer outcomes (TBC; supervised by Katriina Whitaker, Emma Ream and Afrodita Marcu)
MSc and BSc student supervision
Research Design and Methodology
von Wagner, C., Good, A., Whitaker, K.L., Wardle, J. (2011). Psychosocial determinants of socioeconomic inequalities in cancer screening participation: A conceptual framework. Epidemiologic Reviews, 33, 135-147.
Whitaker, K.L., Scott, S., Winstanley, K., Macleod, U., Wardle, J. (2014). Attributions of cancer ‘alarm’ symptoms in a community sample. PLOS One, 9 (12):e114028, DOI: 10.1371/journal.pone.0114028
Whitaker, K.L., Macleod, U., Winstanley, K., Scott, S., Wardle, J. (2015). Help-seeking for cancer ‘alarm’ symptoms: a qualitative interview study. British Journal of General Practice, 65(631); e96-e105.
Whitaker, K.L., Scott, S., Wardle, J. (2015) Applying symptom appraisal models to understand socio-demographic differences in responses to possible cancer symptoms: A research agenda. British Journal of Cancer, 112, Suppl 1: S27-S34, doi: 10.1038/bjc.2015.39.
Whitaker, K.L., Friedemann Smith, C., Winstanley K., Wardle, J. (2016). What prompts help-seeking for cancer ‘alarm’ symptoms? A primary care based survey. British Journal of Cancer, 114, 334-339, doi: 10.1038/bjc.2015.445
Davies, H., Marcu, A., Vedsted, P., Whitaker, K.L (2018). Is lower symptom recognition associated with socioeconomic inequalities in help-seeking for potential breast cancer symptoms? Psycho-Oncology, 27 (2), 626-632.
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
International migration has increased rapidly over the past 20 years, with an estimated 281 million people living outside their country of birth. Similarly, migration to the UK has continued to rise over this period; current annual migration is estimated to be over 700,000 per year (net migration of over 300,000). With migration comes linguistic diversity, and in healthcare, this often translates into linguistic discordance between patients and healthcare professionals. This can result in communication difficulties that lead to lower quality of care and poor outcomes. COVID-19 has heightened inequalities in relation to language: communication barriers, defined as barriers in understanding or accessing key information on healthcare and challenges in reporting on health conditions, are known to have compounded risks for migrants in the context of COVID-19. Digitalisation of healthcare has further amplified inequalities in primary care for migrant groups.
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.
Objectives People who are referred for colonoscopy, following an abnormal colorectal cancer (CRC) screening result, are at increased risk of CRC. Despite this, many individuals decline the procedure. The aim of this study was to investigate why. Methods As little is currently known about non-attendance at follow-up colonoscopy, and follow-up of abnormal screening results is a nurse-led process, we decided to conduct key informant interviews with Specialist Screening Practitioners ([SSPs] nurses working in the English Bowel Cancer Screening Program). Interviews were conducted online. Transcripts were assessed using inductive and deductive coding techniques. Results 21 SSPs participated in an interview. Five main types of barriers and facilitators to colonoscopy were described, namely: Sociocultural, Practical, Psychological, Health-related and COVID-related. Key psychological and sociocultural factors included: ‘Fear of pain and discomfort associated with the procedure’ and ‘Lack of support from family and friends’. Key practical, health-related and COVID-related factors included: ‘Family and work commitments’, ‘Existing health conditions as competing priorities’ and ‘Fear of getting COVID-19 at the hospital'. Conclusions A range of barriers and facilitators to follow-up colonoscopy exist. Future studies conducted with patients are needed to further explore barriers to colonoscopy. Practice implications Strategies to reduce non-attendance should adopt a multifaceted approach.
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.
Background: Most cancers are diagnosed following contact with primary care. Patients diagnosed with cancer often see their doctor multiple times with potentially relevant symptoms before being referred to see a specialist, suggesting missed opportunities during doctor-patient conversations. Objective: To understand doctor-patient communication around the significance of persistent or new presenting problems and its potential impact on timely cancer diagnosis. Research design: Qualitative thematic analysis based on video recordings of doctor-patient consultations in primary care and follow-up interviews with patients and doctors. Subjects: 80 video observations, 20 patient interviews and 7 doctor interviews across 7 general practices in England. Results: We found that timeliness of diagnosis may be adversely affected if doctors and patients do not come to an agreement about the presenting problem’s significance. ‘Disagreements’ may involve misaligned cognitive factors such as differences in medical knowledge between doctor and patient, or misaligned emotional factors such as patients’ unexpressed fear of diagnostic procedures. Interviews suggested that conversations where the difference in views is either not recognised or stays unresolved may lead to unhelpful patient behaviour after the consultation (e.g. non-attendance at specialist appointments), creating potential for diagnostic delay and patient harm. Conclusions: Our findings highlight how doctor-patient consultations can impact timely diagnosis when patients present with persistent or new problems. Misalignments were common and could go unnoticed, leaving gaps for potential to cause patient harm. These findings have implications for timely diagnosis of cancer and other serious disease because they highlight the complexity and fluidity of the consultation, and the subsequent impact on the diagnostic process.
Background. Cancer awareness campaigns aim to increase awareness of the potential seriousness of signs and symptoms of cancer, and encourage their timely presentation to healthcare services. Enhanced understanding of the prevalence of symptoms possibly indicative of cancer in different population subgroups, and associated general practitioner (GP) help-seeking behaviour, will help to target cancer awareness campaigns more effectively. Aim. To determine: i) the prevalence of 21 symptoms possibly indicative of breast, colorectal, lung or upper gastrointestinal cancer in the United Kingdom (UK), including six ‘red flag’ symptoms; ii) whether the prevalence varies among population subgroups; iii) the proportion of symptoms self-reported as presented to GPs; iv) whether GP help-seeking behaviour varies within population subgroups. Methods. Self-completed questionnaire about experience of, and response to, 25 symptoms (including 21 possibly indicative of the four cancers of interest) in the previous month and year; sent to 50,000 adults aged 50 years or more and registered with 21 general practices in Staffordshire, England or across Scotland. Results. Completed questionnaires were received from 16,778 respondents (corrected response rate 34.2%). Almost half (45.8%) of respondents had experienced at least one symptom possibly indicative of cancer in the last month, and 58.5% in the last year. The prevalence of individual symptoms varied widely (e.g. in the last year between near zero% (vomiting up blood) and 15.0% (tired all the time). Red flag symptoms were uncommon. Female gender, inability to work because of illness, smoking, a history of a specified medical diagnosis, low social support and lower household income were consistently associated with experiencing at least one symptom possibly indicative of cancer in both the last month and year. The proportion of people who had contacted their GP about a symptom experienced in the last month varied between 8.1% (persistent cough) and 39.9% (unexplained weight loss); in the last year between 32.8% (hoarseness) and 85.4% (lump in breast). Nearly half of respondents experiencing at least one red flag symptom in the last year did not contact their GP about it. Females, those aged 80+ years, those unable to work because of illness, ex-smokers and those previously diagnosed with a specified condition were more likely to report a symptom possibly indicative of cancer to their GP; and those on high household income less likely. Conclusion. Symptoms possibly indicative of cancer are common among adults aged 50+ years in the UK, although they are not evenly distributed. Help-seeking responses to different symptoms also vary. Our results suggest important opportunities to provide more nuanced messaging and targeting of symptom-based cancer awareness campaigns.
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 (e.g. 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 30‐60 (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 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˂0.001, 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˂0.001, except Bangladeshi women) and 'using traditional remedies' (p˂0.001,except Caribbean women). Among ethnic minority women, adult migration to the UK, 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 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.
Background Worrying about wasting GP time is frequently cited as a barrier to help-seeking for cancer symptoms. Aim To explore the circumstances under which individuals feel that they are wasting GP time. Design and setting Community-based, qualitative interview studies that took place in London, the South East and the North West of England. Method Interviewees (n = 62) were recruited from a sample (n = 2042) of adults aged ≥50 years, who completed a ‘health survey’ that included a list of cancer ‘alarm’ symptoms. Individuals who reported symptoms at baseline that were still present at the 3-month follow-up (n = 271), and who had also consented to be contacted (n = 215), constituted the pool of people invited for interview. Analyses focused on accounts of worrying about wasting GP time. Results Participants were worried about wasting GP time when time constraints were visible, while dismissive interactions with their GP induced a worry of unnecessary help-seeking. Many felt that symptoms that were not persistent, worsening, or life-threatening did not warrant GP attention. Additionally, patients considered it time-wasting when they perceived attention from nurses or pharmacists to be sufficient, or when appointment structures (for example, ‘one issue per visit’) were not adhered to. Close relationships with GPs eased worries about time-wasting, while some patients saw GPs as fulfilling a service financed by taxpayers.
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 60-69 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 (e.g. comorbidities, healthcare system factors).
Objective. Advanced stage at diagnosis for breast cancer is associated with lower socio-economic status (SES). We explored what factors in the patient interval (time from noticing a bodily change to ﬁrst consultation with a health care professional) may contribute to this inequality.Design. Qualitative comparative study.Methods. Semi-structured interviews with a sample of women (≥47 years) from higher(n = 15) and lower (n = 15) educational backgrounds, who had experienced at least one potential breast cancer symptom. Half the participants ( n = 15) had sought medical help,half had not (n = 15). Without making breast cancer explicit, we elicited women’s sense-making around their symptoms and help-seeking decisions.Results. Containment of symptoms and conﬁdence in acting upon symptoms emerged as two broad themes that differentiated lower and higher educational groups. Women from lower educational backgrounds tended to attribute their breast symptoms to trivial factors and were reticent in using the word ‘cancer’. Despite ‘knowing’ that symptoms could be related to cancer, women with lower education invoked lack of medical knowledge – ‘I am not a doctor’ – to express uncertainty about interpreting symptoms and accessing help. Women with higher education were conﬁdent about interpreting symptoms, seeking information online, and seeking medical help.Conclusions. Our ﬁndings suggest that knowledge of breast cancer alone may not explain socio-economic differences in how women respond to breast cancer symptoms as women with lower education had ‘reasons’ not to react. Research is needed on how to overcome a wider spectrum of psycho-social factors to reduce future inequality.
Background The Faster Diagnosis Standard (FDS) is to be introduced in England in 2020. This standard is a new policy in which patients should have cancer ruled out or diagnosed within 28 days of referral. Aim To explore public attitudes towards the FDS within the context of their recent referral experiences. Design and setting Four 90-minute focus groups (two in Guildford, two in Bradford). Method Participants aged >50 years without a current cancer diagnosis (N = 29), who had completed certain diagnostic tests, for example, ultrasound, and received results within the last 6 months were recruited. Age, education, and sex were evenly distributed across groups through purposive sampling. Results The largest cause of concern was the waiting process for obtaining test results. Most had experienced swift referral, and it was difficult for participants to understand how the new standard could impact upon time progressing through the system. Responsibility for meeting the standard was also a concern: participants did not see their own behaviours as a form of involvement. The GP’s role was conceptualised by patients as communicating about their referral, establishing patients’ preferences for information, and continued involvement at each stage of the referral process. The standard legitimised chasing for test results, but 28 days was considered too long. Conclusion Patients should be asked what they would like to know about their referral. GPs should be more transparent about the referral process and the potential for a lack of clarity around next steps.
Purpose: Primary care nurses can contribute to cancer early diagnosis. The objective of this systematic review was to identify, appraise and synthesise evidence on primary care nurses’ contribution towards cancer early diagnosis in developed countries. Method: The following databases were searched in September 2017: MEDLINE, PsychINFO, CINAHL, SCOPUS, and EMBASE. Data were extracted on nurses’: knowledge of cancer; frequency of 'cancer early diagnosis-related discussions' with patients; and perceived factors influencing these discussions. Studies were appraised using the Mixed Methods Appraisal Tool. Results: Twenty-one studies were included from: United States, United Kingdom, Ireland, Spain, Turkey, Australia, Brazil and Middle East. Studies were mostly of low quality (one did not meet any appraisal criteria, 15 met one, four met two, and one met three). Nurses’ knowledge of cancer, and their frequency of ‘cancer early diagnosis-related discussions’, varied across countries. This may be due to measurement bias or nurses’ divergent roles across healthcare systems. Commonly perceived barriers to having screening discussions included: lack of time, insufficient knowledge and communication skills, and believing that patients react negatively to this topic being raised Conclusions: Findings suggest a need for nurses to be adequately informed about, and have the confidence and skills to discuss, the topic of cancer early diagnosis. Further high-quality research is required to understand international variation in primary care nurses’ contribution to this field, and to develop and evaluate optimal methods for preparing them for, and supporting them in, this.
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.
Background To improve earlier presentation with potential symptoms of cancer accurate data is 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, 1) 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) 2) 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 was 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 suggests routine general practice records are unreliable for measuring this important part of the patient’s symptom journey.
The entire landscape of cancer management in primary care, from case identification to the management of people living with and beyond cancer, is evolving rapidly in the face of the coronavirus disease 2019 (COVID-19) pandemic.1 In a climate of fear and mandated avoidance of all but essential clinical services, delays in patient, population, and health-care system responses to suspected cancer symptoms seem inevitable.
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 participants’ online searches and visited websites, the VIZZATATM browser tracker. Methods: An online survey was completed by 56 cancer-free women (Mage = 60.34 years, 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 (Time1) and again after seeking information online (Time2). The online tracking tool, embedded in the survey, was used to capture in real time participants’ 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 (n=10, 18%), there was evidence of engagement in online information-seeking, e.g. medical terminology and cancer attribution at Time2, despite their searching activity not being recorded. Twenty five participants considered cancer as a potential cause for the nipple rash at Time1, yet only one of these used ‘cancer’ as a search term. Most participants (n=40, 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 NHS webpage “Paget’s disease of the nipple” being the most visited one. At Time2, after engaging in the Internet search task, more participants attributed the nipple rash to breast cancer than at Time1, n=37 (66.1%) vs. n=25 (44.6%), although a small number of participants (n=6) changed from making a cancer attribution at Time1 to a non-cancer one at Time2. 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. ClinicalTrial: N/A
Background: Very little is known about the influence of chronic conditions on symptom attribution and help-seeking for potential cancer symptoms. Aim: We aimed to determine if symptom attribution and anticipated help-seeking for potential lung cancer symptoms is influenced by pre-existing respiratory conditions (often referred to as comorbidity) such as asthma or chronic obstructive pulmonary disease (COPD). Design and Setting: 2 143 adults (1081 with and 1062 without a respiratory condition) took part in an online vignette survey. Method: The vignette described potential lung cancer symptoms (persistent cough and breathlessness) after which questions were asked on symptom attribution and anticipated help-seeking. Results: Attribution of symptoms to cancer was similar in participants with and without respiratory conditions (22%). Participants with respiratory conditions, compared to those without, were more likely to attribute the new or changing cough and breathlessness to asthma or COPD (adjusted odds ratio=3.64, 95% CI=3.02,4.39). Overall, 56.5% of participants reported intention to seek help from a GP within 3 weeks if experiencing the potential lung cancer symptoms. Having a respiratory condition increased the odds of prompt help-seeking (OR=1.25, 95% CI=1.04,1.49). Regular healthcare appointments was associated with higher odds of anticipated help-seeking. Conclusions: Only 1 in 5 participants identified persistent cough and breathlessness as potential cancer symptoms, and half said they would promptly seek help from a GP, indicating scope for promoting help-seeking for new or changing symptoms. Chronic respiratory conditions did not appear to interfere with anticipated help-seeking, which might be explained by regular appointments to manage chronic conditions.
Objective The incidence of lung cancer is four‐times higher in people with Chronic Obstructive Pulmonary Disease (COPD) compared to 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 40‐83 with COPD. Topic guides drew on the Integrated Symptom‐Response Framework and covered symptom experience, interpretation, action, recognition, help‐seeking, evaluation and re‐evaluation. We used the Framework Method to analyse the data. Results Participants said 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.
How people trust the internet and seek health information online when experiencing and interpreting potential cancer symptoms is not well understood. We interviewed twenty-seven women who had recently experienced at least one potential breast cancer symptom, and explored their symptom experience, help-seeking strategies, and whether they consulted the internet in relation to their symptoms. We conducted a thematic analysis and constructed a typology of attitudes towards, and experiences of, consulting the internet about the symptoms: i) confident; ii) neutral; iii) hesitant; and iv) avoidant. ‘Hesitant’ and ‘avoidant’ participants rarely mentioned cancer explicitly, doubted being able to interpret the information found online, and expressed concerns over finding ‘scaremongering’ information or making incorrect self-diagnosis. The ‘avoiders’ and the ‘hesitant’ participants perceived online information-seeking as being inherently risky, partly because online health content is likely to be inaccurate or exaggerated, and partly because the process of lay interpretation is likely to be flawed by lack of medical expertise. The findings suggest that not all women experiencing potential breast cancer symptoms seek health information online spontaneously or trust the internet as a legitimate source of health information. The women who did engage in online information seeking, particularly those with lower education, felt unsure about how to appraise online health sources to interpret their symptoms
Purpose To mitigate the health risks that result from low health literacy and difficulty identifying patients with insufficient health literacy, health organizations recommend physicians apply health literacy universal precaution communication skills when communicating with all patients. Our aim was to assess how health literacy universal precautions are delivered in routine GP consultations, and explore whether there were differences in how GPs used universal precaution approaches according to areas of deprivation in England. Methods This was a mixed methods study using video and interview data. Ten physicians conducted 217 consultations in primary care settings with adults over 50 years old between July 2017 and March 2018 in England. Eighty consultations (N=80) met the inclusion criteria of new or persisting problems. Descriptive quantitative analysis of video-recorded consultations using an observation tool and qualitative thematic analysis of transcribed scripts. Meta-themes explored differences in physicians’ communication by areas of deprivation. Results Descriptive statistics showed physicians used a caring tone of voice and attitude (n=73, 91.3%) and displayed comfortable body language (n=69, 86.3%) but infrequently demonstrated profession-specific health literacy universal precaution communication skills, such as the teach-back technique (n=3, 3.8%). Inferences about physicians’ communication from qualitative analysis converged with the quantitative findings. Differences in physicians’ communication varied according to areas of deprivation. Conclusions Physicians need health literacy universal precautions communication skills to improve population health.
Objective: To qualitatively explore associations between emotional responses to experience of cancer 'alarm' symptoms and help-seeking in a community sample of adults. Method: Interviewees (n=62) were recruited from a community sample (n=2042) of adults aged ≥50 years, who had completed a health survey that included a list of cancer alarm symptoms. Participants who had reported an alarm symptom both at baseline and 3-month follow-up (n=271), and who had consented to contact (n=215), constituted the pool for invitations to interview. Results: Over a third of participants (37%) described an emotional response to their symptom experience. In all these cases, there was evidence of awareness of the risk of cancer. Emotional responses were usually either classified as mild ('worry') or severe ('fear'). Worry was often described in the context of a desire to seek medical help, either to rule out cancer or to minimise patient delay. In contrast, the 'fear' group described associations with death, the perceived incurability of cancer, and the consequence of a cancer diagnosis. Where the emotional reaction was fear, medical contact was seen as something to be avoided either because it had no value or because it was preferable not to be told a diagnosis. Conclusion: In this community sample, worry about the possibility of cancer was associated with help-seeking, either for reassurance or as part of a 'sensible' strategy to deal with the risk. In contrast, fear was associated with avoiding help-seeking or even thinking about cancer, which could lead to prolonged help-seeking intervals.
Abstract Background: Presenting to primary care with potential cancer symptoms is contingent on one’s ability to recognize potentially serious symptoms. We investigated differences between smokers and non-smokers in symptoms experienced, awareness and consulting of potential respiratory, head and neck cancer symptoms. Methods: Smokers and non-smokers aged over 50 from Yorkshire general practice lists were sent a postal questionnaire asking about symptoms, consulting and awareness of cancer symptoms. Data were analysed using STATA14. Results: Response rate after one reminder was 30.5% (1205/3954). Smoking status was associated with experience of cough (p
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.
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.
Objectives: To understand self-reported potential cancer symptom help-seeking behaviours and attitudes during the first 6 months (March–August 2020) of the UK COVID-19 pandemic. Design: UK population-based survey conducted during August and September 2020. Correlates of help-seeking behaviour were modelled using logistic regression in participants reporting potential cancer symptoms during the previous 6 months. Qualitative telephone interviews with a purposeful subsample of participants, analysed thematically. Setting: Online UK wide survey. Participants: 7543 adults recruited via Cancer Research UK online panel provider (Dynata) and HealthWise Wales (a national register of ‘research ready’ participants) supplemented with social media (Facebook and Twitter) recruitment. 30 participants were also interviewed. Main outcome measures: Survey measures included experiences of 15 potential cancer symptoms, help-seeking behaviour, barriers and prompts to help-seeking. Results: Of 3025 (40.1%) participants who experienced a potential cancer symptom, 44.8% (1355/3025) had not contacted their general practitioner (GP). Odds of help-seeking were higher among participants with disability (adjusted OR (aOR)=1.38, 95% CI 1.11 to 1.71) and who experienced more symptoms (aOR=1.68, 95% CI 1.56 to 1.82), and lower among those who perceived COVID-19 as the cause of symptom(s) (aOR=0.36, 95% CI 0.25 to 0.52). Barriers included worries about wasting the doctor’s time (1158/7543, 15.4%), putting strain on healthcare services (945, 12.6%) and not wanting to make a fuss (907, 12.0%). Interviewees reported reluctance to contact the GP due to concerns about COVID-19 and fear of attending hospitals, and described putting their health concerns on hold. Conclusions: Many people avoided healthcare services despite experiencing potential cancer symptoms during the COVID-19 pandemic. Alongside current help-seeking campaigns, well-timed and appropriate nationally coordinated campaigns should signal that services are open safely for those with unusual or persistent symptoms.
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 4,913 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=2,042). Almost half the respondents (936/2,042; 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.
Oesophageal cancer (EC) is characterized by vague symptoms and is often diagnosed at an advanced stage, leading to poor outcomes. Therefore, we aimed to investigate whether there might be any patient factors contributing to delay in EC diagnosis, and focused on the symptom appraisal and help-seeking strategies of people diagnosed with EC in the UK. Semi-structured interviews were conducted with 14 patients aged >18 years with localised EC at point of diagnosis. Purposive sampling was used to include patients from one to nine months post-diagnosis. Analysis of the interviews identified three main themes: Interpreting symptoms, Triggers to seeking help, and Making sense of an unfamiliar cancer. Findings suggested that participants normalised symptoms or used previous health experiences as a means to interpret their symptoms. The majority of participants were not alarmed by their symptoms, mainly because they had very little knowledge of EC specific symptoms. Lack of knowledge also influenced participants’ sense-making of their diagnosis. The findings highlight that the process of symptom appraisal in EC is likely to be inaccurate, which may hinder early presentation and thus diagnosis. Public health campaigns communicating EC specific symptoms, however, could shorten the appraisal period and lead to earlier diagnosis.
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.
Background: Contacting a doctor for advice when experiencing a potential cancer symptom is an important step in earlier diagnosis, but barriers to consultation are commonly reported. Aim: To investigate patients’ GP consultation preferences when presented with a potential cancer symptom, and to describe whether these preferences are mediated by variable levels of cancer risk. Design and setting: UK-wide online survey of adults over 50 years old, using quota sampling to reflect general population characteristics. Method: A discrete choice experiment examined preferences for primary care consultation for three cancer symptom scenarios (risk level not mentioned, risk designated as either “low” or “high”). Scenarios based on length of consultation, time to getting an appointment, convenience, choice of GP and GP listening skills were presented in a self-completed online questionnaire. Results: We obtained 9616 observations from 601 participants. Participants expressed preferences for doctors with better listening skills, for ability to see a GP of their choice and for shorter waiting times. These findings were the same across risk conditions and demographic groups. Participants were willing to wait an extra 3.5 weeks for an appointment with a doctor with good/very good listening skills (vs very poor listening skills) and an extra 1 week for an appointment with a GP of their choice (vs any GP). Conclusion: Patient decisions about help-seeking seem to be particularly influenced by the anticipated listening skills of doctors. Improving doctor’s communication skills may in the longer term encourage people to seek prompt medical help when they experience a cancer symptom.
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.