Professor Katriina Whitaker

Professor of Psychology and Lead for Cancer Care
BSc, MSc, PhD, CPsychol
+44 (0)1483 684622
9-5pm, except Fridays


My qualifications

PhD in Psychology (CR-UK Studentship)
University College London
MSc in Research Methods (Distinction)
University College London
BSc in Experimental Psychology (1st Class)
University of Bristol


Research interests

Research projects

Research collaborations

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).



Postgraduate research supervision



Laura Boswell, Jenny Harris, Athena Ip, Jessica Russell, Georgia B. Black, Katriina L. Whitaker (2023)Assessing awareness of blood cancer symptoms and barriers to symptomatic presentation: measure development and results from a population survey in the UK, In: BMC Cancer23(1)633 BMC

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.

Georgia B Black, Julie-Ann Moreland, Naomi J Fulop, Georgios Lyratzopoulos, Brian D Nicholson, Katriina L Whitaker (2024)Personal and organisational health literacy in the non-specific symptom pathway for cancer: An ethnographic study, In: Health expectations : an international journal of public participation in health care and health policy27(3)e14062

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. 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. 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. 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, 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.

Athena Ip, Georgia Black, Cecilia Vindrola-Padros, Claire Taylor, Sophie Otter, Madeleine Hewish, Afsana Bhuiya, Julie Callin, Angela Wong, Michael Machesney, Naomi J. Fulop, Cath Taylor, Katriina L. Whitaker (2022)Socioeconomic differences in help seeking for colorectal cancer symptoms during COVID-19: a UK-wide qualitative interview study of patient experiences in primary care, In: British Journal of General Practice72(720)pp. e472-e482 Royal College of General Practitioners

Background COVID-19 has led to rapid changes in healthcare delivery, raising concern that these changes may exacerbate existing inequalities in patient outcomes. Aim To understand how patients’ help-seeking experiences in primary care for colorectal cancer symptoms during COVID-19 were affected by their socioeconomic status (SES). Design and setting Qualitative semi-structured interviews with males and females across the UK, recruited using purposive sampling by SES. Method Interviews were carried out with 39 participants (20 higher SES; 19 lower SES) who contacted primary care about possible symptoms of colorectal cancer during COVID-19. Data were analysed using framework analysis followed by comparative thematic analysis to explore differences between groups. Results Three themes were identified with differences between SES groups: 1) how people decided to seek medical help through appraisal of symptoms; 2) how people navigated services; and 3) impact of COVID-19 on how patients interacted with healthcare professionals. The lower SES group expressed uncertainty appraising symptoms and navigating services (in terms of new processes resulting from COVID-19 and worries about infection). There was also potential for increased disparity in diagnosis and management, with other methods of getting in touch (for example, email or 111) taken up more readily by higher SES patients. Conclusion The findings suggest that COVID-19 exacerbated disparities between higher and lower SES participants. This study raises awareness around challenges in help seeking in the context of the pandemic, which are likely to persist (post-COVID-19) as healthcare systems settle on new models of care (for example, digital). Recommendations are provided to reduce inequalities of care.

Katriina L. Whitaker, Demi Krystallidou, Emily D. Williams, Georgia Black, Cecilia Vindrola-Padros, Sabine Braun, Paramjit Gill (2021)Editorials Addressing language as a barrier to healthcare access and quality, In: British Journal of General Practice72(714)pp. 4-5 Royal College of General Practitioners

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.

Natalie Gil, Anna Cox, Katriina L Whitaker, Robert Kerrison (2022)Inequity in HPV vaccination, primary HPV screening, and sexual health education for people with learning disabilities, autism, and severe mental illness: A discussion, In: RqR Enfermería Comunitaria10(4)pp. 3-7
Athena Ip, Georgia Black, Cecilia Vindrola, Claire Taylor, Sophie Otter, Madeleine Hewish, Afsana Bhuiya, Julie Callin, Angela Wong, Michael Machesney, Naomi J Fulop, Cath Taylor, Katriina L Whitaker (2022)Author response, In: British journal of general practice72(721)pp. 372-373
Daniel Jones, Richard D Neal, Sean R G Duffy, Suzanne E Scott, Katriina L Whitaker, Kate Brain (2020)Impact of the COVID-19 pandemic on the symptomatic diagnosis of cancer: the view from primary care, In: The Lancet Oncology Elsevier

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.

Georgia B Black, Laura Boswell, Jenny Harris, Katriina L Whitaker (2023)What causes delays in diagnosing blood cancers? A rapid review of the evidence, In: Primary health care research & development24e26

We undertook a rapid review of literature relating to the diagnosis of blood cancers, to find out what factors contribute to delays in diagnosis, including symptom recognition, appraisal and help-seeking behaviours. We used rapid review methodology following Tricco to synthesise current literature from two electronic databases. We searched for studies about symptom appraisal help-seeking for all blood cancers published between 2001 and 2021, written in English. Fifteen studies were included in the review, of which 10 were published in the United Kingdom. We found a number of factors associated with delays in blood cancer diagnosis. These included patient factors such as gender, age and ethnicity, as well as health system factors such as poor communication and seeing a locum clinician in primary care. A narrative synthesis of the evidence produced four types of symptom interpretation by patients: (1) symptoms compatible with normal state of health, (2) event-linked problems, (3) mild or chronic illness and (4) non-specific unwell state. These four interpretations were linked to different help-seeking behaviours. After seeking help, patients often experienced delays due to healthcare professionals' (HCPs') non-serious interpretation of symptoms, misleading blood tests, discontinuity of care and other barriers in the diagnostic pathway. Blood cancers are difficult to diagnose due to non-specific heterogeneous symptoms, and this is reflected in how those symptoms are interpreted by patients and managed by HCPs. It is important to understand how different interpretations affect delays in help-seeking, and what HCPs can do to support timely follow-up for patients.

D Amelung, KL Whitaker, D Lennard, M Ogden, J Sheringham, Y Zhou, FM Walter, H Singh, C Vincent, G Black (2019)Influence of doctor-patient conversations on behaviours of patients presenting to primary care with new or persistent symptoms: A video observation study, In: BMJ Quality & Safety BMJ Publishing Group

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.

AFRODITA MIHAELA MARCU, Marke Lorraine, JO ARMES, KATRIINA WHITAKER, EMMA REAM (2022)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, In: European Journal of Cancer Caree13652

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.

ATHENA IP, Georgia Black, Cecilia Vindrola-Padros, Claire Taylor, Sophie Otter, Madeleine Hewish, Afsana Bhuiya, Julie Callin, Angela Wong, Michael Machesney, James Green, Raymond Oliphant, Naomi J. Fulop, CATH TAYLOR, KATRIINA WHITAKER (2022)Healthcare Professional and Patient Perceptions of Changes in Colorectal Cancer Care Delivery During the COVID-19 Pandemic and Impact on Health Inequalities, In: Cancer control29 Sage

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.

Sarah Beck, Katriina Whitaker, Mark Cropley (2023)Is rumination associated with psychological distress after a cancer diagnosis? A systematic review, In: Journal of psychosocial oncologyahead-of-print(ahead-of-print)pp. 1-26 Routledge

Objective: The aim of this work was to review evidence on the association between psychological rumination and distress in those diagnosed with cancer. Methods: Six databases were searched for studies exploring rumination alongside overall assessments of psychological distress, depression, anxiety, or stress. Results: Sixteen studies were identified. Rumination was associated with distress cross-sectionally and longitudinally. However, once baseline depression was controlled for, the association was no longer seen. The emotional valence of ruminative thoughts and the style in which they were processed, rather than their topic, was associated with distress. Brooding and intrusive rumination were associated with increased distress, deliberate rumination had no association, and reflection/instrumentality had mixed findings. Conclusions: This review highlights that it is not necessarily the topic of content, but the style and valence of rumination that is important when considering its association with distress. The style of rumination should be the target of clinical intervention, including brooding and intrusion.

Katriina Whitaker, Laura Boswell, Jessica Russell, Georgia Black, Jenny Harris (2023)The relationship between patient enablement and help-seeking in the context of blood cancer symptoms, In: Psycho-oncology32(8)pp. 1223-1230 Wiley

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 (OR 0.89, 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, 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.

Sandra van Os, Aron Syversen, Katriina L. Whitaker, Samantha L. Quaife, Sam M. Janes, Mbasan Jallow, Georgia Black (2021)Lung cancer symptom appraisal, help-seeking and diagnosis – rapid systematic review of differences between patients with and without a smoking history, In: Psycho-Oncology Wiley

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.

Robert S. Kerrison, Elizabeth Travis, Christina Dobson, Katriina L. Whitaker, Colin Rees, Stephen Duffy , Christian von Wagner (2021)Barriers and facilitators to colonoscopy following fecal immunochemical test screening for colorectal cancer: A key informant interview study, In: Patient Education and Counseling Elsevier

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.

Maria Del Mar Estupiñan Fernandez De Mesa, Afrodita Mihaela Marcu, Emma Ream, Katriina Whitaker (2023)Relationship between intersectionality and cancer inequalities: A scoping review protocol, In: BMJ open13e066637 British Medical Journal Publishing Group

IntroductionPersistent inequalities in cancer care and cancer outcomes exist within and between countries. However, the evidence pertaining to the root causes driving cancer inequalities is mixed. This may be explained by the inadequate attention paid to experiences of patients with cancer living at the intersection of multiple social categories (eg, social class, ethnicity). This is supported by the intersectionality framework. This framework offers an alternative lens through which to analyse and understand how these interlocking systems of oppression uniquely shape the experiences of patients with cancer and drive inequalities. In this protocol, we outline a scoping review that will systematically map what is known about the relationship between intersectionality and inequalities in care experience and cancer outcomes of patients with cancer; and to determine how the intersectionality framework has been applied in studies across the cancer care pathway and across countries.Methods and analysisThis study will be guided by Arksey and O’Malley’s, and Levac et al’s frameworks for scoping reviews. We will identify and map the evidence on cancer inequalities and intersectionality from 1989 to present date. Electronic databases (EMBASE, PsychINFO, CINAHL, Medline, Web of Science, ProQuest) and a systematic search strategy using a combination of keywords and Boolean operators AND/OR will be used to identify relevant studies. Screening of eligible papers and data extraction will be conducted by two independent reviewers, and disagreements resolved by discussion with the research team. We will use an iterative process to data charting using a piloted form. Findings will be collated into a narrative report.Ethics and disseminationEthical approval is not required since data used are from publicly available secondary sources. Findings will be disseminated through peer-reviewed journals, conferences and stakeholder meetings. Further, findings will inform the next phases of a multistage research project aimed at understanding inequalities among patients with breast cancer.

G B Black, Sandra van Os, K L Whitaker, G Hawkins, S L Quaife (2022)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, In: Psycho-oncology (Chichester, England) Wiley

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.

Aradhna Kaushal, Jo Waller, Christian von Wagner, Sonja Kummer, Katriina Whitaker, Aishwarya Puri, Georgios Lyratzopoulos, Christina Renzi (2020)The role of chronic conditions in influencing symptom attribution and anticipated help-seeking for potential lung cancer symptoms: a vignette-based study, In: British Journal of General Practice Royal College of General Practicioners

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.

Dahir Sheik-Mohamud , Emily McBride , KATRIINA WHITAKER, Colin Rees, Stephen Duffy , Christian von Wagner , Robert Stephen Kerrison (2021)Patient barriers and facilitators of colonoscopy use: A rapid systematic review and thematic synthesis of the qualitative literature, In: Preventive Medicine106413

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

Rebecca Wilson, Harriet D Quinn-Scoggins, Yvonne Moriarty, Jacqueline Hughes, Mark Goddard, Rebecca Cannings-John, Victoria Whitelock, Katriina L. Whitaker, Detelina Grozeva, Julia Townson, Kirstie Osborne, Stephanie Smits, Michael Robling, Julie Hepburn, Graham Moore, Ardiana Gjini, Kate Brain, Jo Waller (2021)Intentions to participate in cervical and colorectal cancer screening during the COVID-19 pandemic: A mixed-methods study, In: Preventive Medicine153106826 Elsevier

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.

Sarah M. Smith, Katriina L. Whitaker, Amanda H. Cardy, Alison M. Elliott, Phil C. Hannaford, Peter Murchie (2019)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, In: Family Practice Oxford University Press (OUP)

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.

Katriina Whitaker (2019)Earlier diagnosis: the importance of cancer symptoms, In: LANCET ONCOLOGY21(1)pp. 6-8 ELSEVIER SCIENCE INC
Rosalind Adam, Alison J. Thornton, Katriina L. Whitaker, Peter Murchie, Philip C. Hannaford, Susan Hall, Sarah Smith, Alison M. Elliott (2022)How does social context influence appraisal and help-seeking for potential cancer symptoms in adults aged 50 and over? A qualitative interview study, In: European Journal of Cancer Caree13640 Wiley

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.

Robert S. Kerrison, Natalie Gil, Elizabeth Travis, Robyn Jones, Katriina L. Whitaker, Colin Rees, Stephen Duffy, Christian von Wagner (2023)Barriers to colonoscopy in UK colorectal cancer screening programmes: Qualitative interviews with ethnic minority groups, In: Psycho-Oncology Wiley

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.

Philip C. Hannaford, Alison J. Thornton, Peter Murchie, Katriina Whitaker, Rosalind Adam, Alison M. Elliott (2020)Patterns of symptoms possibly indicative of cancer and associated help-seeking behaviour in a large sample of United Kingdom residents-The USEFUL study, In: PLOS One Public Library of Science

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.

Georgia B. Black, Sandra van Os, Cristina Renzi, Fiona Walter, Willie Hamilton, KATRIINA WHITAKER (2022)How does safety netting for lung cancer symptoms help patients to reconsult appropriately? A qualitative study, In: BMC primary care23179 BMC
Harriet D Quinn-Scoggins, Rebecca Cannings-John, Yvonne Moriarty, Victoria Whitelock, Katriina L. Whitaker, Detelina Grozeva, Jacqueline Hughes, Julia Townson, Kirstie Osborne, Mark Goddard, Grace M. McCutchan, Jo Waller, Michael Robling, Julie Hepburn, Graham Moore, Ardiana Gjini, Kate Brain (2021)Cancer symptom experience and help-seeking behaviour during the COVID-19 pandemic in the UK: A cross-sectional population survey, In: BMJ open11e053095

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.

Philip Anyanwu, Yvonne Moriarty, Grace McCutchan, Detelina Grozeva, Mark Goddard, Victoria Whitelock, Rebecca Cannings-John, Harriet Quinn-Scoggins, Jacqueline Hughes, Ardiana Gjini, Julie Hepburn, Kirstie Osborne, Michael Robling, Julia Townson, Jo Waller, Katriina L. Whitaker, Jamie Brown, Kate Brain, Graham Moore (2022)Health behaviour change among UK adults during the pandemic: findings from the COVID-19 cancer attitudes and behaviours study, In: BMC public health22 BMC

Abstract 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.

Georgia Black, Samuel M. Janes, Matthew Callister, Sandra van Os, Katriina Whitaker, Samantha L. Quaife (2023)The role of smoking status in making risk-informed diagnostic decisions for potential lung cancer: a qualitative study of healthcare professionals and patients, In: Medical Decision Making SAGE Publications

Background Lung cancer clinical guidelines and risk tools often rely on smoking history as a significant risk factor. However, never-smokers make up 14% of the lung cancer population and this proportion is rising. Consequently, they are often perceived as low-risk and may experience diagnostic delays. This study aimed to explore how clinicians make risk-informed diagnostic decisions for never-smokers. Methods Qualitative interviews were conducted with ten lung cancer diagnosticians, supported by data from interviews with twenty never-smoker lung cancer patients. The data was analysed using framework analysis based on the Model of Pathways to Treatment framework and data-driven interpretations. Results Participants described three main strategies for making risk-informed decisions incorporating smoking status: guidelines, heuristics and potential harms. Clinicians supplemented guidelines with their own heuristics for never-smokers, such as using higher thresholds for chest x-ray. Decisions were easier for patients with high risk symptoms such as haemoptysis. Clinicians worried about over-investigating never-smoker patients, particularly in terms of physical and psychological harms from invasive procedures or radiation. To minimise unnecessary anxiety about lung cancer risk, clinicians made efforts to downplay this. Conversely, some patients found that this caused process harms such as delays and miscommunications. Conclusion Improved guidance and methods of risk differentiation for never-smokers are needed to avoid diagnostic delays, over-reassurance, and clinical pessimism. This requires an improved evidence base and initiatives to increase awareness among clinicians of the incidence of lung cancer in never-smokers. As the proportion of never-smoker patients increases, this issue will become more urgent.

Natalie Maria Gil, Anna Clare Cox, Katriina Whitaker, Robert Stephen Kerrison (2023)Cancer risk-factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners. A scoping review., In: Journal of intellectual disability research Wiley

Background: The physical health of people with intellectual disabilities has been identified as an area of ongoing concern and priority. Research has increasingly focused on cancer, with studies indicating people with intellectual disabilities are at an increased risk of cancer and of mortality, compared with the general population. This review aims to systematically identify and synthesize the published academic literature exploring cancer risk-factor and symptom awareness among people with intellectual disabilities, carers, and healthcare professionals. Methods: In line with Arksey and O’Malley’s (2005) framework for scoping reviews, five incremental stages were followed: (1) identify research question, (2) identifying relevant studies, (3) study selection, (4) extracting and charting of data, (5) collating, summarizing, and reporting results. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews, PRISMA-Scr. Results: The search strategy identified 352 records, 16 records met all eligibility criteria and were included for review. The studies address a range of areas including knowledge and awareness of cancer risk-factors and symptoms, and interventions to promote awareness of cancer. Conclusions: Cancer risk-factor and symptom awareness is low among adults with intellectual disabilities, paid and unpaid carers, and HCPs. Theoretically underpinned, co-designed tools and interventions to improve awareness are lacking. There is uncertainty surrounding how to best support people with intellectual disabilities in raising cancer awareness, even within the professional healthcare environment. There is a predominance of research on breast cancer awareness. Future studies focusing on other cancers is needed to build a complete picture of awareness among adults with intellectual disabilities, paid and unpaid carers, and HCPs.

Gil Natalie, Anna Cox, Katriina L. Whitaker (2022)Inequity in HPV vaccination, primary HPV screening, and sexual health education for people with learning disabilities, autism, and severe mental illness: A discussion., In: Quantitative and Qualitative Community Nursing Research10(4)
Afrodita Marcu, Cecile Muller, Emma Ream, Katriina L Whitaker (2019)Online information-seeking about potential breast cancer symptoms Capturing online behaviour with an Internet browsing tracking tool, In: Journal of Medical Internet Research Journal of Medical Internet Research

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

Katriina L. Whitaker, Demi Krystallidou, Emily D. Williams, Georgia Black, Cecilia Vindrola-Padros, Paramjit Gill, Sabine Braun (2022)Understanding Uptake and Experience of Interpreting Services in Primary Care in a South Asian Population in the UK, In: JAMA Network Open5(11)e2244092 American Medical Association

Introduction Addressing language barriers in accessing health care may improve equitable access in line with current United Nations Sustainable Development Goals.1 English proficiency is associated with socioeconomic position, social segregation, and employment,2 and the intersectionality of ethnicity, immigration status, and lack of language proficiency results in cumulative disadvantage.3 Guidance for commissioners in the UK states that language and communication requirements should not prevent patients from receiving equitable care.4 Limited evidence is available on interpreting service uptake and patient experience that is crucial to ensure services reduce ethnic and socioeconomic health inequalities.5 We aimed to address this evidence gap. Methods This national, cross-sectional community-based pilot survey conducted from December 1, 2020, to January 5, 2021, adhered to the STROBE reporting guideline. Ethical approval was obtained from the University of Surrey. Survey interviews were conducted by telephone by multilingual researchers, and participants provided verbal informed consent. Eligibility criteria included self-reported limited or no English language proficiency, age older than 18 years, and self-reported Pakistani, Indian, or Bangladeshi ethnicity. Convenience and snowball sampling were undertaken to identify eligible participants across the UK, including London, Birmingham, Leicester, Manchester/Oldham, and Bradford. Measures included type(s) of interpreting service used and perceived barriers to their uptake. We evaluated differences between people who had and had not used interpreting services with χ2 and Fisher exact tests. Two-sided P < .05 indicated statistical significance. Analyses were performed using SPSS, version (IBM Corporation). Results Of 105 people in the sample, 35 (33.3%) each reported Indian, Bangladeshi, or Pakistani ethnicity, with ages ranging from 18 to 79 years. Fifty-four participants (51.4%) were women and 51 (48.6%) were men; 83 (79.0%) were married or cohabiting; and 17 (16.2%) had no formal education. Sixty-three participants (60.0%) reported using at least 1 type of formal interpreting service, including face-to-face (57 [54.3%]), telephone (18 [17.1%]), and video-mediated (5 [4.8%]). Forty-seven participants (44.8%) reported family or friends interpreting for them during consultations; of these, only 18 (38.3%) reported formal interpreting service uptake. Thirty-four participants (32.4%) reported having a physician or nurse who speaks their language; of these, 11 (32.4%) used a formal interpreting service. Thirty-seven participants (35.2%) reported being offered a choice of language support by primary care clinicians. Compared with participants who had never used formal interpreting services, those who had were more likely to have no formal education (16 of 63 [25.4%] vs 1 of 42 [2.4%]), report lower confidence in managing conditions (24 of 63 [38.1%] vs 7 of 42 [16.7%]), perceive a need for language support (51 of 63 [81.0%] vs 16 of 42 [38.1%]), and have been told about language support by primary care clinicians (35 of 63 [55.6%] vs 12 of 42 [28.6%]) (Table). The Figure summarizes interpreting service barriers. Discussion This cross-sectional survey study found that most respondents reported using at least 1 type of formal interpreting service, with face-to-face interpreting being most common, followed by telephone interpreting. Video-mediated interpreting use was rare. However, nearly half of the respondents relied on family or friends. Raising awareness of professional interpreting services, patient education, and addressing perceived barriers to accessing formal language support services have the potential to improve access among groups who lack English proficiency. Our study has some limitations. Data were collected during the COVID-19 pandemic, which may have affected responses, although we did not restrict responses to this timescale, and some likely related to prepandemic experiences. Although we found important indications about the likely influences on interpreting service uptake, larger-scale studies are required to account for the selection bias associated with snowball sampling.6 Use of formal interpreters is known to close gaps in quality of clinical care for patients with limited English proficiency. Our survey, which was developed to understand why uptake and experiences may vary, can be used at scale to obtain this vital information to improve equitable health service access.

Katriina Whitaker, S Cromme, K Winstanley, C Renzi, J Wardle (2015)Emotional responses to the experience of cancer 'alarm' symptoms, In: Psycho-Oncology24pp. 29-29 WILEY-BLACKWELL

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.

KL Whitaker, SE Scott, J Wardle (2015)Applying symptom appraisal models to understand sociodemographic differences in responses to possible cancer symptoms: a research agenda, In: BRITISH JOURNAL OF CANCER112pp. S27-S34 NATURE PUBLISHING GROUP
Afrodita Marcu, G Lyratzopoulos, G Black, P Vedsted, Katriina Whitaker (2016)Educational differences in likelihood of attributing breast symptoms to cancer: a vignette-based study, In: Psycho-Oncology25(10)pp. 1191-1197 Wiley

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.

Hanna Skrobanski, Emma Ream, Karen Poole, Katriina Whitaker (2019)Understanding primary care nurses’ contribution to cancer early diagnosis: A systematic review, In: European Journal of Oncology Nursing41pp. 149-164 Elsevier

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.

C Renzi, KL Whitaker, K Winstanley, S Cromme, J Wardle (2016)Unintended consequences of an 'all-clear' diagnosis for potential cancer symptoms: a nested qualitative interview study with primary care patients., In: Br J Gen Pract Royal College of General Practitioners

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.

Yvonne Cunningham, Sally Wyke, Kevin G. Blyth, Douglas Rigg, Sara Macdonald, Una Macleod, Stephen Harrow, Kathryn A. Robb, Katriina L. Whitaker (2019)Lung cancer symptom appraisal among people with Chronic Obstructive Pulmonary Disease: A qualitative interview study, In: PSYCHO-ONCOLOGY28(4)pp. 718-725 JOHN WILEY & SONS LTD

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.

Katriina Whitaker, Kelly Winstanley, Una Macleod, Suzanne E. Scott, Jane Wardle (2015)Low cancer suspicion following experience of a cancer ‘warning sign’, In: European Journal of Cancer51(16)pp. 2473-2479 Elsevier

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.

Katriina Whitaker, A Ghanouni, Y Zhou, G Lyratzopoulos, S Morris (2017)Patients' preferences for GP consultation for perceived cancer risk in primary care: a discrete choice experiment., In: British Journal of General Practice67(659)pp. e388-e395 Royal College of General Practitioners

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.

KL Whitaker, AE Simon, RJ Beeken, J Wardle (2012)Do the British public recognise differences in survival between three common cancers?, In: BRITISH JOURNAL OF CANCER106(12)pp. 1907-1909 NATURE PUBLISHING GROUP
Hilary Davies, Afrodita Marcu, P Vedsted, Katriina Whitaker (2017)Is lower symptom recognition associated with socioeconomic inequalities in help-seeking for potential breast cancer symptoms?, In: Psycho-Oncology27(2)pp. 626-632 Wiley

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).

J Waller, E Douglas, KL Whitaker, J Wardle (2013)Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study, In: BMJ OPEN3(4)ARTN epp. ?-? BMJ PUBLISHING GROUP
KL Whitaker, U Macleod, K Winstanley, SE Scott, J Wardle (2015)Help seeking for cancer 'alarm' symptoms: a qualitative interview study of primary care patients in the UK, In: BRITISH JOURNAL OF GENERAL PRACTICE65(631)pp. E96-E105 ROYAL COLL GENERAL PRACTITIONERS
Emily D. Williams, Katriina L. Whitaker, Marianne Piano, Laura A.V. Marlow (2019)Ethnic differences in barriers to symptomatic presentation in primary care: A survey of women in England, In: Psycho-Oncology Wiley

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.

Afrodita Marcu, G Black, P Vedsted, G Lyratzopoulos, Katriina Whitaker (2016)Educational differences in responses to breast cancer symptoms: A qualitative comparative study, In: British Journal of Health Psychology22(1)pp. 26-41 Wiley

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.

Sara Tookey, Cristina Renzi, Jo Waller, Christian von Wagner, Katriina Whitaker (2018)Using the Candidacy Framework to understand how doctor-patient interactions influence perceived eligibility to seek help for cancer alarm symptoms: a qualitative interview study, In: BMC Health Services Research18937 BMC

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.

Theodosia Salika, Georgios Lyratzopoulos, Katriina Whitaker, Jo Waller, Cristina Renzi (2017)Do comorbidities influence help-seeking for cancer alarm symptoms? A population-based survey in England, In: Journal of Public Healthpp. 1-10 Oxford University Press

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.

SK Cromme, K Whitaker, K Winstanley, C Renzi, C Friedemann Smith, J Wardle (2016)Worrying about wasting GP time as a barrier to help-seeking: a community-based, qualitative study, In: British Journal of General Practice66(648)pp. 474-482

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.

EL Low, KL Whitaker, AE Simon, M Sekhon, J Waller (2015)Women's interpretation of and responses to potential gynaecological cancer symptoms: a qualitative interview study, In: BMJ OPEN5(7)ARTN e0080 BMJ PUBLISHING GROUP
Marianne Piano, Georgia Black, Dorothee Amelung, Emily Power, Katriina L Whitaker (2019)Exploring public attitudes towards the new Faster Diagnosis Standard for cancer: a focus group study with the UK public, In: British Journal of General Practicebjgp19X702pp. 1-9 Royal College of General Practitioners

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.

J Waller, KL Whitaker, K Winstanley, E Power, J Wardle (2014)A survey study of women's responses to information about overdiagnosis in breast cancer screening in Britain, In: BRITISH JOURNAL OF CANCER111(9)pp. 1831-1835 NATURE PUBLISHING GROUP
K Winstanley, C Renzi, C Friedemann Smith, J Wardle, Katriina Whitaker (2016)The impact of body vigilance on help-seeking for cancer 'alarm' symptoms: a community-based survey., In: BMC Public Health161172 BioMed Central

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.

KL Whitaker, SE Scott, K Winstanley, U Macleod, J Wardle (2014)Attributions of Cancer 'Alarm' Symptoms in a Community Sample, In: PLOS ONE9(12)ARTN epp. ?-? PUBLIC LIBRARY SCIENCE
Afrodita Marcu, Georgia Black, Katriina Whitaker (2018)Variations in trust in Dr Google when experiencing potential breast cancer symptoms: Exploring motivations to seek health information online, In: Health, Risk & Society20(7-8)pp. 325-341 Taylor & Francis

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

Liane Lewis, Afrodita Marcu, Katriina Whitaker, Roma Maguire (2018)Patient factors influencing symptom appraisal and subsequent adjustment to oesophageal cancer: A qualitative interview study, In: European Journal of Cancer Care27(1)e12745 Wiley

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.

Kate J. Lifford, Detelina Grozeva, Rebecca Cannings-John, Harriet Quinn-Scoggins, Yvonne Moriarty, Ardiana Gjini, Mark Goddard, Julie Hepburn, Jacqueline Hughes, Graham Moore, Kirstie Osborne, Michael Robling, Julia Townson, Jo Waller, Victoria Whitelock, Katriina L. Whitaker, Kate Brain (2023)Satisfaction with remote consultations in primary care during COVID-19: a population survey of UK adults, In: British Journal of General Practice Royal College of General Practitioners

Background: Mode of access to primary care changed during the COVID-19 pandemic; remote consultations became more widespread. With remote consultations likely continuing in UK primary care, it is important to understand people’s perceptions of remote consultations and identify potential resulting inequalities. Aim: To assess satisfaction with remote GP consultation in the UK during the COVID-19 pandemic and identify demographic variation in satisfaction levels. Design and Setting: Cross-sectional survey from the second phase of a large UK-based study. Method: 1426 adults who self-reported having sought help from their doctor in the past six months completed an online questionnaire (February-March 2021). Items included satisfaction with remote consultations and demographic variables. Associations were analysed using multivariable regression. Results: A novel six-item scale of satisfaction with remote GP consultations had good psychometric properties. Participants with higher levels of education had significantly greater satisfaction with remote consultations than participants with mid-level (B=-0.82, 95% CI -1.41, -0.23) or those with low or no qualifications (B=-1.65, 95% CI -2.29, -1.02). People living in Wales reported significantly higher satisfaction compared with those living in Scotland (B=-1.94, 95% CI -3.11, -0.78), though caution is warranted due to small group numbers. Conclusion: These findings can inform the use and adaptation of remote consultations in primary care. Adults with lower educational levels may need additional support to improve their experience and ensure equitable care via remote consultations.

Afrodita Marcu, Cecile Muller, Emma Ream, Katriina L Whitaker (2019)Online Information-Seeking About Potential Breast Cancer Symptoms: Capturing Online Behavior With an Internet Browsing Tracking Tool, In: Journal of medical Internet research21(2)pp. e12400-e12400

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. 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. 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. 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. 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.

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.

Julie Walabyeki, Joy Adamson, Hannah L Buckley, Helena Sinclair, Karl Atkin, Hilary Graham, Katriina Whitaker, Jane Wardle, Una Macleod (2017)Experience of, awareness of and help-seeking for potential cancer symptoms in smokers and non-smokers: a cross-sectional study, In: PLoS ONE Public Library of Science

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

KL Whitaker, K Winstanley, U Macleod, SE Scott, J Wardle (2015)Knowledge of cancer warning signs and reported help-seeking in a community sample, In: EUROPEAN JOURNAL OF CANCER CARE24pp. 9-9
KL Whitaker, SE Scott, K Winstanley, S Cromme, U Macleod, J Wardle (2014)The association between normalising attributions and help-seeking for cancer alarm symptoms in the community: a cross-sectional survey, In: LANCET384pp. 86-86
C Renzi, KL Whitaker, J Wardle (2015)Symptom attribution and help-seeking after an 'all clear' diagnosis: a systematic review of the literature, In: EUROPEAN JOURNAL OF CANCER CARE24pp. 3-3