Centre for Health Services Studies

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profile image for Professor Lindsay Forbes MBBS, BSc, MSc (Public Health), MD MRCP(UK), FFPH

Professor Lindsay Forbes MBBS, BSc, MSc (Public Health), MD MRCP(UK), FFPH

Professor of Public Health and NIHR Research Design Service SE Adviser

 

 

I am a public health scientist with interests in understanding patterns of ill health and health systems to address the needs of the population. I am public health specialty lead for Kent Surrey and Sussex NIHR Clinical Research Network and an adviser for the NIHR Research Design Service South East. I am on the General Medical Council specialist register in public health medicine. Most recently my work has been in two main areas: design and evaluation of primary care services, and systems to build evidence of what works to improve the health of the public. I started off my academic public health career in epidemiology, although over the years I have developed a much broader set of research skills, including complex intervention design and evaluation.

I joined CHSS in January 2016 from King’s College London and Queen Mary, University of London, where I was one of the Principal Investigators of the Department of Health Policy Research Unit on cancer awareness, screening and early diagnosis. Over an eight year period I researched pathways to care in cancer and led the evaluation of a unique health professional-delivered intervention to promote early presentation of breast cancer. I advised the Department of Health on the Be Clear on Cancer Know4Sure and breast cancer awareness campaigns. During 2011-13 I played a major role in a national project to develop an innovative evidence-based approach to information about cancer screening, aiming to offer informed choice. Before 2008, I was consultant in public health medicine in Wandsworth PCT, where I was clinical effectiveness lead and provided public health advice on acute commissioning, alongside a role in St George’s, University of London investigating the epidemiology of chronic disease in relation to air quality.
I trained in academic public health medicine 1995-2002 in London, where I was lucky to have a joint NHS-university post in South London health authorities and King’s College London. Before that I spent several years in acute hospital medicine after qualifying in 1988. 

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Articles
Forbes, L. (2023) 'Novel intervention to promote COVID-19 protective behaviours among Black and South Asian communities in the UK: protocol for a mixed-method pilot evaluation', BMJ Open. BMJ.

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Introduction Culturally appropriate interventions to promote COVID-19 health protective measures among Black and South Asian communities in the UK are needed. We aim to carry out a preliminary evaluation of an intervention to reduce risk of COVID-19 comprising a short film and electronic leaflet. Methods and analysis This mixed methods study comprises (1) a focus group to understand how people from the relevant communities interpret and understand the intervention's messages, (2) a before-and-after questionnaire study examining the extent to which the intervention changes intentions and confidence to carry out COVID-19 protective behaviours and (3) a further qualitative study exploring the views of Black and South Asian people of the intervention and the experiences of health professionals offering the intervention. Participants will be recruited through general practices. Data collection will be carried out in the community. Ethics and dissemination The study received Health Research Authority approval in June 2021 (Research Ethics Committee Reference 21/LO/0452). All participants provided informed consent. As well as publishing the findings in peer-reviewed journals, we will disseminate the findings through the UK Health Security Agency, NHS England and the Office for Health Improvement and Disparities and ensure culturally appropriate messaging for participants and other members of the target groups.
Bramwell, D., Peckham, S., Hotham, S., Checkland, K. and Forbes, L. (2022) 'Evaluation of the introduction of QOF quality improvement modules in English general practice: Early findings from a rapid, qualitative exploration of implementation', BMJ Open Quality. doi: 10.1136/bmjoq-2022-001960.

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Background A 2018 review of the English primary care pay-for- performance scheme, the Quality and Outcomes Framework, suggested that it should evolve to better support holistic, patient-centred care and leadership for quality improvement (QI). From 2019, as part of the vision of change, financially incentivised QI cycles (initially in prescribing safety and end-of- life care), were introduced into the scheme. Objectives To conduct a rapid evaluation of general practice staff attitudes, experiences and plans in relation to the implementation of the first two QI modules. This study was commissioned by NHS England and will inform development of the QI programme. Methods Semistructured telephone interviews were conducted with 25 practice managers from a range of practices across England. Interviews were audio recorded with consent and transcribed verbatim. Anonymised data were reflexively thematically analysed using the framework method of analysis to identify common themes across the interviews. Results Participants reported broadly favourable views of incentivised QI, suggesting the prescribing safety module was easier to implement than the end-of- life module. Additional staff time needed and challenges of reviewing activities with other practices were reported as concerns. Some highlighted that local flexibility and influence on subject matter may improve the effectiveness of QI. Several questioned the choices of topic, recognising greater need and potential for improving quality of care in other clinical areas. Conclusion Practices supported the idea of financial incentivisation of QI, however, it will be important to ensure that focus on QI cycles in specific clinical areas does not have unintended effects. A key issue will be keeping up momentum with the introduction of new modules each year which are time consuming to carry
Hashem, F., Jaswal, S. K., Marchand, C., Forbes, L. J., Srinivasan, N., Bates, A. and Peckham, S. (2021) 'Incorporating the interaction between health and work into the undergraduate medical curriculum – a qualitative evaluation of a teaching pilot in English medical schools', Education for Primary Care. doi: 10.1080/14739879.2021.1914182.

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Introduction: There is a growing recognition of the impact of work on health both positive and negative. It is important that all health care professionals are equipped to understand the effects of work and worklessness on health and help patients remain in work or manage a healthy return to work where appropriate. Despite explicit reference to health and work in the General Medical Council's Outcomes for Graduates, currently, there is not a theme that is integrated across the undergraduate medical curricula. Aim: This study evaluates medical tutors' and undergraduates' perspectives of a selection of health and work topics in a teaching pilot to consider the suitability and appropriateness for delivery, integration into the curriculum, tailoring of the resources, and appropriateness and expected attainment of learning objectives. Methods: Qualitative, semi structured interviews and focus groups were carried out with five medical tutors and 36 undergraduates. Interviews and focus groups were recorded, transcribed and thematically analysed. Results: The medical tutors and undergraduates identified suitability of appropriate subject specialties and years of teaching, whether learning objectives were important and if these had been achieved, and recommendations for future delivery. Discussion: Medical tutors were committed to delivering the health and work topics with the flexibility of tailoring the resources to existing subject specialties and with respect to the year of study. Learning objectives were perceived appropriate by tutors, despite ambivalence about their importance from some undergraduates. The resources were identified as having relevance to public health undergraduate teaching and teaching during general practice placements.
da Cunha Saddi, F., Forbes, L. J. and Peckham, S. (2021) 'Guest Editorial: Policy challenges and innovative analyses of payment for performance in health care', Journal of Health Organization and Management, pp. 245-248. doi: 10.1108/JHOM-05-2021-476.

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Forbes, L., Forbes, H., Sutton, M., Checkland, K. and Peckham, S. (2020) 'Changes in patient experience associated with growth and collaboration in general practice: observational study using data from the UK GP Patient Survey', British Journal of General Practice. Royal College of General Practitioners, pp. e906-e915. doi: 10.3399/bjgp20X713429.

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Background For the last few years, English general practices, which are traditionally small, have been encouraged to work together to serve larger populations of registered patients, by merging or collaborating with each other. Meanwhile, patient surveys suggest worsening continuity of care and access to care. Aim To explore whether increasing size of practice population and working collaboratively are linked to changes in continuity of care or access to care. Design and setting Observational study in English general practice using data on patient experience, practice size and collaborative working Methods The main outcome measures were General Practice Patient Survey practice-level proportions of patients reporting positive experiences of access and relationship continuity of care. We compared change in proportions 2013-2018 among practices that had grown and those that had stayed about the same size. We also compared patients' experiences by whether practices were working in close collaborations or not in 2018. Results. Practices that had grown in population size had a greater percentage fall in continuity of care, by 6.6% (95% confidence interval 4.3% to 8.9%) than practices that had stayed about the same size, after controlling for other factors. There was no similar difference in relation to access to care. Practices collaborating closely with others had marginally worse continuity of care than those not working in collaboration and no important differences in access. Conclusion Concerns that larger general practice size threatens continuity of care may be justified.
Forbes, L., Peckham, S. and George, A. (2020) 'Improving and protecting health in England needs more than the NHS', Lancet. Elsevier, p. 1636. doi: 10.1016/S0140-6736(20)32376-X.

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Forbes, L. J., Forbes, H., Sutton, M., Checkland, K. and Peckham, S. (2019) 'How Widespread Is Working at Scale in English General Practice? an Observational Study', British Journal of General Practice. Royal College of General Practitioners, pp. 682-688. doi: 10.3399/bjgp19X705533.

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Background Over the last five years, national policy has encouraged practices to serve populations of >30,000 people (called 'working at scale'), by collaborating with other practices. Aim To describe the number of English general practices working at scale, and their patient populations. Design and setting Observational study of general practice in England Methods We supplemented data published by the National Health Service on practices' self-reports of working in groups with data from reports by various organisations and websites of practice groups. We categorised practices by the extent to which they were working at scale, and examined age distribution of practice population, level of socioeconomic deprivation, rurality and prevalence of longstanding illness by these categories. Results About 55% English practices (serving 33 million patients) were working at scale, individually or collectively serving populations of >30,000 people. Organisations models representing close collaboration for the purposes of core general practice services were identifiable for ~5% of practices; these were: large practices; superpartnerships, and multisite organisations. About 50% of practices were working in looser forms of collaboration focusing on services beyond core general practice, e.g. primary care in the evenings and weekends. Data on organisations models and purpose of the collaboration were very limited for this group. Conclusions In early 2018, <5% of general practices were working closely at scale; about half of practices were working more loosely at scale. Data were, however, incomplete. Understanding what is happening at practice level is needed so that we can evaluate benefits and harms.
Spencer, S., Dickinson, J. and Forbes, L. (2018) 'Occurrence, Risk Factors, Prognosis and Prevention of Swimming-Induced Pulmonary Oedema: a Systematic Review', Sports Medicine - Open. Springer. doi: 10.1186/s40798-018-0158-8.

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Background: Swimming-induced pulmonary oedema (SIPE) can affect people with no underlying health problems,but may be life threatening and is poorly understood. The aim of this systematic review was to synthesise the evidence on SIPE incidence, prevalence, risk factors, short- and long-term outcomes, recurrence and effectiveness of interventions to prevent recurrences. Methods: We carried out a literature search using bibliographic databases and reference lists. Risk of bias was assessed by adapting existing quality assessment tools including those developed by the National Heart Lung and Blood Institute. Results: Nine studies met the inclusion criteria. Quantitative synthesis was not possible because of study heterogeneity. Five studies, which differed from each other in case definition, swimming environment, population characteristics and denominators, reported an incidence of 0.01% of UK triathlons raced over 5 years in unspecified swimming environments(one study, not fully reported, of men and women of unspecified age); 0.5% of river races swum over 3 days in Sweden(one study,of men and women up to the age of 70);and 1.8–26.7% of time trials in the sea around Israel (three studies of male teenage military trainees). One study reported that 1.4% of triathletes in the USA had experienced SIPE. One study found that hypertension, female sex, fish oil use, long course distance and another lower initial lung volumes and flows were risk factors for SIPE. A third study reported that higher mean pulmonary artery pressures and pulmonary artery wedge pressures, and lower tidal volumes were associated with SIPE. Three studies suggested that SIPE symptoms usually resolve within 24 h, although a restrictive deficit in lung function persisted for a week in one small study. We found no studies that reported deaths from SIPE. The single small study of longer-term outcomes reported no difference between affected and unaffected swimmers. Two studies suggested that around 30% of people report recurrences of SIPE. Two very small uncontrolled studies of the effect of sildenafil for recurrence prevention were inconclusive. Conclusions: SIPE may be an important public health problem affecting the growing number of recreational open water swimmers. Further research should clarify the frequency of SIPE among recreational open water swimmers, confirm reported risk factors and explore others, explore long-term consequences and test interventions to prevent recurrences
Pedersen, A. F., Forbes, L. J., Brain, K., Hvidberg, L., Wulff, C. N., Lagerlund, M., Hajdarevic, S., Quaife, S. L. and Vedsted, P. (2018) 'Negative cancer beliefs, recognition of cancer symptoms and anticipated times to help-seeking: an international cancer benchmarking partnership (ICBP) study', BMC Cancer. BioMed Central. doi: 10.1186/s12885-018-4287-8.

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Background: Understanding what influences people to seek help can inform interventions to promote earlier diagnosis of cancer, and ultimately better cancer survival. We aimed to examine relationships between negative cancer beliefs, recognition of cancer symptoms and how long people think they would take to go to the doctor with possible cancer symptoms (anticipated patient intervals). Methods: Telephone interviews of 20,814 individuals (50+) in the United Kingdom, Australia, Canada, Denmark, Norway and Sweden were carried out using the Awareness and Beliefs about Cancer Measure (ABC). ABC included items on cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking for cough and rectal bleeding. The anticipated time to help-seeking was dichotomised as over one month for persistent cough and over one week for rectal bleeding. Results: Not recognising persistent cough/hoarseness and unexplained bleeding as cancer symptoms increased the likelihood of a longer anticipated patient interval for persistent cough (OR=1.66; 95%CI=1.47-1.87) and rectal bleeding (OR=1.90; 95%CI=1.58-2.30), respectively. Endorsing four or more out of six negative beliefs about cancer increased the likelihood of longer anticipated patient intervals for persistent cough and rectal bleeding (OR=2.18; 95%CI=1.71-2.78 and OR=1.97; 95%CI=1.51-2.57). Many negative beliefs about cancer moderated the relationship between not recognising unexplained bleeding as a cancer symptom and longer anticipated patient interval for rectal bleeding (p=0.005). CONCLUSIONS: Intervention studies should address both negative beliefs about cancer and knowledge of symptoms to optimise the effect.
Kaushal, A., McCormick, K., Warburton, F., Burton, C., Ramirez, A. J. and Forbes, L. J. (2018) 'Promoting early presentation of breast cancer in older women during the seasonal influenza vaccination campaign', British Journal of Nursing. Mark Allen Healthcare, pp. 43-49. doi: 10.12968/bjon.2019.28.1.43.

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Background: Older women are at high risk of presenting with late stage of breast cancer, which may be partly because of poor breast cancer awareness. Aims: The aim of this project was to implement and evaluate a new way of delivering the Promoting Early Presentation (PEP) Intervention during flu vaccination appointments in primary care. The PEP intervention is a 1-minute intervention, accompanied by a booklet and delivered by primary care health professionals to provide older women with the knowledge, confidence and skills to present promptly on discovering symptoms of breast cancer. Methods: Health professionals delivered the PEP Intervention to older women at six general practices in South London. We measured changes in breast cancer awareness after the intervention and interviewed practice staff about their experiences of the intervention. Findings: Knowledge of breast symptoms and breast checking was greater in women aged 70+ after the implementation than before. Health professionals' found the intervention acceptable and feasible to implement. Conclusion: This intervention is a novel way of increasing breast cancer awareness in older women, which could contribute to promoting earlier presentation and diagnosis of breast cancer in the UK.
Forbes, L. J., Marchand, C., Doran, T. and Peckham, S. (2017) 'The role of the Quality and Outcomes Framework in the care of long-term conditions: a systematic review', British Journal of General Practice. Royal College of General Practitioners, pp. e775-e784. doi: 10.3399/bjgp17X693077.

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Background: Improving care for people with long-term conditions is central to NHS policy. It has been suggested that the Quality and Outcomes Framework (QOF), a pay-for-performance scheme in primary care that rewards practices for delivering effective interventions in the management of longterm conditions, does not encourage high quality care for this group of patients. Aim: To examine the evidence that the QOF has improved quality of care of patients with long-term conditions. Design Systematic review Method We used electronic databases to search for peer-reviewed empirical quantitative research on the QOF published since the scheme's introduction in 2004. We searched for studies examining the effect of QOF on a broad range of processes and outcomes of care, including coordination and integration of care, holistic and personalised care, self-care, patient experience, physiological and biochemical outcomes, health service utilisation, and mortality. We carried out a narrative synthesis because the studies were heterogeneous. Results: The QOF was associated with a modest slowing of the increase in emergency admission rates, a modest slowing of the increase in consultation rates in severe mental illness, and modest improvements in certain aspects of the care of diabetes. The nature of the evidence means that we cannot be sure that any of these associations is causal. No clear effect on mortality has been demonstrated. We found no evidence to suggest that QOF influences, positively or negatively, integration or coordination of care, holistic or personalised care, self-care, or patients' experience, quality of life or satisfaction. Conclusion: The NHS should consider more broadly what constitutes high quality primary care for people with long-term conditions, and consider other ways of motivating primary care to deliver it.
Donnelly, C., Quaife, S., Forbes, L., Boylan, J., Tishelman, C. and Gavin, A. (2017) 'Do perceived barriers to clinical presentation affect anticipated time to presenting with cancer symptoms: An ICBP Study', European Journal of Public Health. Oxford University Press, pp. 808-813. doi: 10.1093/eurpub/ckx064.

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Background: Cancer survival in the UK and Denmark are lower when compared to similar countries with late diagnosis a possible cause. We aimed to study the relationship between barriers to attending a primary care physician (GP) and anticipated time to help seeking (ATHS) with four cancer symptoms in six countries. Method: A population-based survey measuring cancer awareness and beliefs conducted within the International Cancer Benchmarking Partnership in Australia, Canada, Denmark, Norway, Sweden and UK. Data were collected on perceived barriers to GP consultation (including embarrassment, worry about wasting the doctors time, fear about what the doctor might find and being too busy) and ATHS for persistent cough, abdominal swelling, rectal bleeding and breast changes. Relationships between perceived barriers and ATHS were investigated using multivariable analysis. Results: Among 19,079 respondents, higher perceived barrier scores were associated with longer ATHS intervals for all symptoms studied (p<0.01) responders with the highest barrier scores (>10.84) had between two and three times the odds of longer ATHS. ATHS was low in Australia for all symptoms and highest in Denmark for abdominal bloating. Conclusion: Perceived barriers to help-seeking have a role in delaying GP presentation. Early diagnosis campaigns should address emotional and practical barriers that reduce early presentation with potential cancer symptoms.
Dodd, R. H., Forster, A. S., Sellars, S., Patnick, J., Ramirez, A. J. and Forbes, L. J. (2017) 'Promoting early presentation of breast cancer in older women: sustained effect of an intervention to promote breast cancer awareness in routine clinical practice', Bmc Health Services Research. Biomed Central Ltd. doi: 10.1186/s12913-017-2335-8.

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O'Shea, S. J., Rogers, Z., Warburton, F., Ramirez, A. J., Newton-Bishop, J. A. and Forbes, L. J. (2017) 'Which symptoms are linked to a delayed presentation among melanoma patients? A retrospective study', BMC Cancer. BioMed Central. doi: 10.1186/s12885-016-2978-6.

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Background: The incidence of melanoma is rising. Early detection is associated with a more favourable outcome. The factors that influence the timing of a patient's presentation for medical assessment are not fully understood. The aims of the study were to measure the nature and duration of melanoma symptoms in a group of patients diagnosed with melanoma within the preceding 18 months and to identify the symptoms and barriers associated with a delay in presentation. Methods: A questionnaire was distributed to a random sample of 200 of the 963 melanoma patients who had participated in the Cancer Patient Experience Survey 2010 and were known to be alive 1 year later. Data were collected on symptoms, duration of symptoms prior to presentation and the reasons for not attending a doctor sooner. Results: A total of 159 patients responded to the questionnaire; 74 (47%) were men; mean age was 62 (range 24–90) years. Of the 149 patients who reported a symptom, 40 (27%) had a delayed presentation (i.e. >3 months). A mole growing bigger was the most common symptom and reporting this symptom was significantly associated with a delayed presentation (odds ratio (OR) 2.04, 95% confidence interval (95% CI) 1.14–5.08). Patients aged ≥65 years were less likely to report a barrier to presentation and were less likely to delay than those under 40, although this was of borderline statistical significance (OR 0.28, 95% CI 0.08–1.00). Conclusions: This study highlights that an enlarging mole is a significant symptom influencing the timing of presentation. Increasing public awareness of the signs of melanoma and of the importance of early presentation is desirable. Health professionals should take advantage of the opportunity to educate patients on such symptoms and signs where feasible. Further exploration of the barriers to presentation in younger people should be considered.
Kaushal, A., Ramirez, A. J., Warburton, F., Forster, A. S., Linsell, L., Burgess, C., Tucker, L., Omar, L. and Forbes, L. J. (2016) 'Promoting Early Presentation intervention sustains increased breast cancer awareness in older women for three years: A randomized controlled trial', Journal of Medical Screening. Sage, pp. 163-165. doi: 10.1177/0969141316667408.

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Objective In a randomized controlled trial, the Promoting Early Presentation intervention increased older women's breast cancer awareness after two years. We investigated whether this increase was sustained at three years, and the effect on breast screening self-referral. Methods We randomly allocated 867 women attending their final invited breast screening appointment to the Promoting Early Presentation intervention or usual care. We examined breast cancer awareness after three years and breast screening self-referrals after four years. Results Women in the Promoting Early Presentation intervention arm had higher breast cancer awareness at three years than the usual care arm (odds ratio: 10.4; 95% confidence interval: 3.1 to 34.8). There were no differences in proportions self-referring for breast screening between arms, but statistical power was limited. Conclusion The Promoting Early Presentation intervention has a sustained effect on breast cancer awareness in older women. The effect on self-referral for breast screening is unclear.
Niksic, M., Rachet, B., Quaresma, M., Moller, H. and Forbes, L. J. (2016) 'Is Cancer survival associated with cancer symptom awareness and barriers to seeking medical help in England? An ecological study', British Journal of Cancer. Nature Publishing Group, pp. 876 -886. doi: 10.1038/bjc.2016.246.

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Abstract BACKGROUND: Campaigns aimed at raising cancer awareness and encouraging early presentation have been implemented in England. However, little is known about whether people with low cancer awareness and increased barriers to seeking medical help have worse cancer survival, and whether there is a geographical variation in cancer awareness and barriers in England. METHODS: From population-based surveys (n=35?308), using the Cancer Research UK Cancer Awareness Measure, we calculated the age- and sex-standardised symptom awareness and barriers scores for 52 primary care trusts (PCTs). These measures were evaluated in relation to the sex-, age-, and type of cancer-standardised cancer survival index of the corresponding PCT, from the National Cancer Registry, using linear regression. Breast, lung, and bowel cancer survival were analysed separately. RESULTS: Cancer symptom awareness and barriers scores varied greatly between geographical regions in England, with the worst scores observed in socioeconomically deprived parts of East London. Low cancer awareness score was associated with poor cancer survival at PCT level (estimated slope=1.56, 95% CI: 0.56; 2.57). The barriers score was not associated with overall cancer survival, but it was associated with breast cancer survival (estimated slope=-0.66, 95% CI: -1.20; -0.11). Specific barriers, such as embarrassment and difficulties in arranging transport to the doctor's surgery, were associated with worse breast cancer survival. CONCLUSIONS: Cancer symptom awareness and cancer survival are associated. Campaigns should focus on improving awareness about cancer symptoms, especially in socioeconomically deprived areas. Efforts should be made to alleviate barriers to seeking medical help in women with symptoms of breast cancer.British Journal of Cancer advance online publication 18 August 2016; doi:10.1038/bjc.2016.246 www.bjcancer.com.
Niksic, M., Rachet, B., Warburton, F. G. and Forbes, L. J. (2016) 'Ethnic differences in cancer symptom awareness and barriers to seeking medical help in England', British Journal of Cancer. Springer Nature, pp. 136-144. doi: 10.1038/bjc.2016.158.

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Background: Ethnic differences in cancer symptom awareness and barriers to seeking medical help in the English population are not fully understood. We aimed to quantify these differences, to help develop more effective health campaigns, tailored to the needs of different ethnic groups. Methods: Using a large national data set (n=38492) of cross-sectional surveys that used the Cancer Research UK Cancer Awareness Measure, we examined how cancer symptom awareness and barriers varied by ethnicity, controlling for socio-economic position, age and gender. Data were analysed using multivariable logistic regression. Results: Awareness of cancer symptoms was lower in minority ethnic groups than White participants, with the lowest awareness observed among Bangladeshis and Black Africans. Ethnic minorities were more likely than White British to report barriers to helpseeking. South Asians reported the highest emotional barriers, such as lack of confidence to talk to the doctor, and practical barriers, such as worry about many other things. The Irish were more likely than the White British to report practical barriers, such as being too busy to visit a doctor. White British participants were more likely than any other ethnic group to report that they would feel worried about wasting the doctor's time. Overall, Black Africans had the lowest barriers. All differences were statistically significant (P<0.01 level), after controlling for confounders. Conclusions: Our findings suggest the need for culturally sensitive and targeted health campaigns, focused on improving recognition of cancer symptoms among ethnic minorities. Campaigns should tackle the specific barriers prevalent in each ethnic group.
Crossman, T., Warburton, F., Richards, M., Smith, H., Ramirez, A. and Forbes, L. J. (2016) 'The role of general practice in the diagnosis of oral cancer', British Journal of Oral and Maxillofacial Surgery. Elsevier, pp. 208-212. doi: 10.1016/j.bjoms.2015.11.003.

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The incidence of oral cancer is increasing in the United Kingdom. There is evidence that early diagnosis and effective treatment improve survival, but the poor 5-year survival rate (50%), which has not improved for several decades, has been attributed to advanced stage at presentation. To investigate the symptoms associated with cancer of the oral cavity and to explore the role of general practitioners (GP) in the identification and referral of patients, we sent 200 patients questionnaires on the route to diagnosis, symptoms, delay in presentation, and outcomes of consultations with their GP. Of 161 respondents, over half (56%) had been referred to secondary care by their GP and a third (32%) by their dentist. The most commonly reported symptoms were a mouth ulcer (32%), a lump in the face or neck (28%), and pain or soreness in the mouth or throat (27%). Fifteen per cent delayed presentation for more than 3 months. After consultation with a GP (n=109), 53% were referred to a specialist, 22% were referred for tests, 12% were told that their symptom was not serious, and 12% were treated for another condition. GPs have an important role in the identification and referral of people with oral cancer, and the clearly recognised symptoms identified in this study can be used to aid assessment and decision-making. Interventions to promote the prompt identification of oral cancer in general practice such as the opportunistic screening of high-risk patients may help to improve the poor survival rates.
Campbell, J., Pyer, M., Rogers, S., Jones, J., Ramirez, A. and Forbes, L. J. (2015) 'Promoting early presentation of breast cancer in women over 70 years old in general practice', Journal of Public Health. Oxford University Press. doi: 10.1093/pubmed/fdv125.

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Background Delay in presentation contributes to poorer survival of older women with breast cancer. Research has shown the effectiveness of the promoting early presentation (PEP) intervention when delivered by radiographers in the NHS Breast Screening Programme. This paper investigates the effectiveness of the intervention when delivered by practice nurses in general practice. Methods The Breast Cancer Awareness Measure was used to compare participants' awareness of breast cancer before, 1 month after and 12 months after the delivery of the PEP intervention. Five hundred and fifty-six women aged over 70 years took part, 308 of whom returned all three surveys. Results The intervention was associated with increased awareness of non-lump breast symptoms and reported breast check frequency. There was a marked increase in breast cancer awareness which persisted for 12 months. Less than 5% of women were classified as 'breast cancer aware' before the intervention, rising to over 25% 1 month afterwards. This percentage dropped slightly after 1 year to just below 20%. Conclusion Delivery of the PEP intervention in general practice was very effective at raising the awareness of breast cancer among older women. Primary care settings are well placed to enhance the reach of this kind of intervention to at-risk women.
Howell, D. A., Warburton, F., Ramirez, A.-J., Roman, E., Smith, A. G. and Forbes, L. J. (2015) 'Risk factors for delay in symptomatic presentation of leukaemia, lymphoma and myeloma', British Journal of Cancer. Nature Publishing Group, pp. 1114-1120. doi: 10.1038/bjc.2015.311.

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Background: UK policy aims to improve cancer outcomes by promoting early diagnosis, which for many haematological malignancies is particularly challenging as the pathways leading to diagnosis can be difficult and prolonged. Methods: A survey about symptoms was sent to patients in England with acute leukaemia, chronic lymphocytic leukaemia (CLL), chronic myeloid leukaemia (CML), myeloma and non-Hodgkin lymphoma (NHL). Symptoms and barriers to first help seeking were examined for each subtype, along with the relative risk of waiting >3 months' time from symptom onset to first presentation to a doctor, controlling for age, sex and deprivation. Results: Of the 785 respondents, 654 (83.3%) reported symptoms; most commonly for NHL (95%) and least commonly for CLL (67.9%). Some symptoms were frequent across diseases while others were more disease-specific. Overall, 16% of patients (n=114) waited >3 months before presentation; most often in CML (24%) and least in acute leukaemia (9%). Significant risk factors for >3 months to presentation were: night sweats (particularly CLL and NHL), thirst, abdominal pain/discomfort, looking pale (particularly acute leukaemias), and extreme fatigue/tiredness (particularly CML and NHL); and not realising symptom(s) were serious. Conclusions: These findings demonstrate important differences by subtype, which should be considered in strategies promoting early presentation. Not realising the seriousness of some symptoms indicates a worrying lack of public awareness.
Niksic, M., Rachet, B., Warburton, F., Wardle, J., Ramirez, A. and Forbes, L. (2015) 'Cancer symptom awareness and barriers to symptomatic presentation in England – Are we clear on cancer?', British Journal of Cancer. Nature Publishing Group, pp. 533-542. doi: 10.1038/bjc.2015.164.

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Background: Low cancer awareness may contribute to delayed diagnosis and poor cancer survival. We aimed to quantify socio-demographic differences in cancer symptom awareness and barriers to symptomatic presentation in the English population. Methods: Using a uniquely large data set (n=49?270), we examined the association of cancer symptom awareness and barriers to presentation with age, gender, marital status and socio-economic position (SEP), using logistic regression models to control for confounders. Results: The youngest and oldest, the single and participants with the lowest SEP recognised the fewest cancer symptoms, and reported most barriers to presentation. Recognition of nine common cancer symptoms was significantly lower, and embarrassment, fear and difficulties in arranging transport to the doctor's surgery were significantly more common in participants living in the most deprived areas than in the most affluent areas. Women were significantly more likely than men to both recognise common cancer symptoms and to report barriers. Women were much more likely compared with men to report that fear would put them off from going to the doctor. Conclusions: Large and robust socio-demographic differences in recognition of some cancer symptoms, and perception of some barriers to presentation, highlight the need for targeted campaigns to encourage early presentation and improve cancer outcomes.
Quaife, S. L., Winstanley, K., Robb, K. A., Simon, A. E., Ramirez, A. J., Forbes, L. J., Brain, K. E., Gavin, A. and Wardle, J. (2015) 'Socioeconomic inequalities in attitudes to cancer: an international cancer benchmarking study', European Journal of Cancer Prevention. Wolters Kluwer Health, Inc, pp. 253-260. doi: 10.1097/CEJ.0000000000000140.

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Socioeconomic status (SES) differences in attitudes towards cancer have been implicated in the differential screening uptake and the timeliness of symptomatic presentation. However, the predominant emphasis of this work has been on cancer fatalism, and many studies focus on specific community subgroups. This study aimed to assess SES differences in positive and negative attitudes towards cancer in UK adults. A population-based sample of UK adults (n=6965, age?50 years) completed the Awareness and Beliefs about Cancer scale, including six belief items: three positively framed (e.g. 'Cancer can often be cured') and three negatively framed (e.g. 'A cancer diagnosis is a death sentence'). SES was indexed by education. Analyses controlled for sex, ethnicity, marital status, age, self-rated health, and cancer experience. There were few education-level differences for the positive statements, and overall agreement was high (all>90%). In contrast, there were strong differences for negative statements (all Ps<0.001). Among respondents with lower education levels, 57% agreed that 'treatment is worse than cancer', 27% that cancer is 'a death sentence' and 16% 'would not want to know if I have cancer'. Among those with university education, the respective proportions were 34, 17 and 6%. Differences were not explained by cancer experience or health status. In conclusion, positive statements about cancer outcomes attract near-universal agreement. However, this optimistic perspective coexists alongside widespread fears about survival and treatment, especially among less-educated groups. Health education campaigns targeting socioeconomically disadvantaged groups might benefit from a focus on reducing negative attitudes, which is not necessarily achieved by promoting positive attitudes.
Lim, A. W. W., Ramirez, A. J., Hamilton, W., Sasieni, P., Patnick, J. and Forbes, L. J. (2014) 'Delays in diagnosis of young women with symptomatic cervical cancer in England: an interview-based study', British Journal of General Practice. Royal College of General Practitioners, pp. e602-e610. doi: 10.3399/bjgp14X681757.

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Background: Diagnosis may be delayed in young females with cervical cancer because of a failure to recognise symptoms. Aim: To examine the extent and determinants of delays in diagnosis of young females with symptomatic cervical cancer. Design and setting: A national descriptive study of time from symptoms to diagnosis of cervical cancer and risk factors for delay in diagnosis at all hospitals diagnosing cervical cancer in England. Method: One-hundred and twenty-eight patients <30 years with a recent diagnosis of cervical cancer were interviewed. Patient delay was defined as ?3 months from symptom onset to first presentation and provider delay as ? 3 months from first presentation to diagnosis. Results: Forty (31%) patients had presented symptomatically: 11 (28%) delayed presentation. Patient delay was more common in patients <25 than patients aged 25–29 (40% versus 15%, P = 0.16). Vaginal discharge was more common among patients who delayed presentation than those who did not; many reported not recognising this as a possible cancer symptom. Provider delay was reported by 24/40 (60%); in some no report was found in primary care records of a visual inspection of the cervix and some did not re-attend after the first presentation for several months. Gynaecological symptoms were common (84%) among patients who presented via screening. Conclusions: Young females with cervical cancer frequently delay presentation, and not recognising symptoms as serious may increase the risk of delay. Delay in diagnosis after first presentation is also common. There is some evidence that UK guidelines for managing young females with abnormal bleeding are not being followed.
Forbes, L., Warburton, F., Richards, M. and Ramirez, A. (2014) 'Risk factors for delay in symptomatic presentation: a survey of cancer patients', British Journal of Cancer. Springer Nature, pp. 581-588. doi: 10.1038/bjc.2014.304.

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Background: Delay in symptomatic presentation leading to advanced stage at diagnosis may contribute to poor cancer survival. To inform public health approaches to promoting early symptomatic presentation, we aimed to identify risk factors for delay in presentation across several cancers. Methods: We surveyed 2371 patients with 15 cancers about nature and duration of symptoms using a postal questionnaire. We calculated relative risks for delay in presentation (time from symptom onset to first presentation >3 months) by cancer, symptoms leading to diagnosis and reasons for putting off going to the doctor, controlling for age, sex and deprivation group. Results: Among 1999 cancer patients reporting symptoms, 21% delayed presentation for >3 months. Delay was associated with greater socioeconomic deprivation but not age or sex. Patients with prostate (44%) and rectal cancer (37%) were most likely to delay and patients with breast cancer least likely to delay (8%). Urinary difficulties, change of bowel habit, systemic symptoms (fatigue, weight loss and loss of appetite) and skin symptoms were all common and associated with delay. Overall, patients with bleeding symptoms were no more likely to delay presentation than patients who did not have bleeding symptoms. However, within the group of patients with bleeding symptoms, there were significant differences in risk of delay by source of bleeding: 35% of patients with rectal bleeding delayed presentation, but only 9% of patients with urinary bleeding. A lump was a common symptom but not associated with delay in presentation. Twenty-eight percent had not recognised their symptoms as serious and this was associated with a doubling in risk of delay. Embarrassment, worry about what the doctor might find, being too busy to go to the doctor and worry about wasting the doctor's time were also strong risk factors for delay, but were much less commonly reported (<6%). Interpretation: Approaches to promote early presentation should aim to increase awareness of the significance of cancer symptoms and should be designed to work for people of the lowest socioeconomic status. In particular, awareness that rectal bleeding is a possible symptom of cancer should be raised.
Book sections
Niksic, M. and Forbes, L. J. (2018) 'Awareness of Colorectal Cancer: Recognition of Symptoms and Risk Factors by Socio-demographic Characteristics', in Timely Diagnosis of Colorectal Cancer. Cham, Switzerland: Springer, pp. 1-20. doi: 10.1007/978-3-319-65286-3_1.

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Background: Early recognition of symptoms of colorectal cancer enables prompt help-seeking and timely diagnosis that may save lives. We aimed to assess public awareness of symptoms of colorectal cancer, anticipated delay to help-seeking in relation to these symptoms, and knowledge of risk factors and most common types of cancer in the English population. Methods: Cross-sectional surveys (n = 38,630), using the first validated measure of public cancer awareness—the Cancer Research UK Cancer Awareness Measure (CAM), were carried out in England during 2009/11. We examined the association of cancer symptom awareness, knowledge of risk factors for colorectal cancer and anticipated time to help-seeking with age, gender, marital status, educational attainment and socio-economic position. Data were analysed using Kruskal-Wallis tests and logistic regression models. Results: Knowledge that colorectal cancer is the third most common type of cancer in men and women was poor, as only about 10% of participants were aware of this fact. Almost half of participants could not recall any symptom of (46%) or any risk factor (44%) for colorectal cancer. Participants who least frequently recalled and recognised the four cancer symptoms were men, the youngest, the socio-economically deprived, unemployed and single participants. Over a third of participants reported that they would delay help-seeking for more than 2 weeks for "unexplained weight loss" (38%), but only 5% reported this for "unexplained bleeding". The elderly, the underprivileged and participants without a degree least frequently recognised risk factors, especially "eating red or processed meat each day" and "eating less than 5 of fruit and vegetables a day". Conclusions: Future campaigns should focus on increasing awareness about symptoms and risk factors of colorectal cancer, and ensuring that people know how common this cancer is. Further efforts are needed to encourage early presentation, particularly among population sub-groups with low cancer awareness.
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Last Updated: 02/11/2020