Evaluation of the introduction of QOF quality improvement modules in English general practice: early findings from a rapid, qualitative exploration of implementation.

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 out for time poor General Practitioners (GPs)/practices.

Promoting early presentation of breast cancer in older women: sustained effect of an intervention to promote breast cancer awareness in routine clinical practice.

BACKGROUND: Older women have poorer survival from breast cancer, which may be at least partly due to poor breast cancer awareness leading to delayed presentation and more advanced stage at diagnosis. In a randomised trial, an intervention to promote early presentation of breast cancer in older women increased breast cancer awareness at 1 year compared with usual care (24 versus 4%). We examined its effectiveness in routine clinical practice. METHODS: We piloted the intervention delivered by practising health professionals to women aged about 70 in four breast screening services. We measured the effect on breast cancer awareness at 1 year compared with comparison services, where women did not receive the intervention. RESULTS: At 1 year, 25% of women in pilot services were breast cancer aware compared with 4% in comparison services (p = 0.001). The components of breast cancer awareness were knowledge of breast cancer non-lump symptoms (pilot: 63% vs comparison: 82% at 1 year; OR = 2.56, 95% CI 1.92-3.42), knowledge of age related risk (pilot: 8% vs comparison: 36% at 1 year; OR = 5.56, 95% CI 4.0-7.74) and reported breast checking (pilot: 70% vs comparison: 78% at 1 year; OR = 1.49, 95% CI 1.13-1.96). CONCLUSION: The intervention may be as effective in routine clinical practice as in a randomised controlled trial. This intervention has the potential to reduce patient delay in the diagnosis of breast cancer in older women. TRIAL REGISTRATION: The PEP trial was registered with the International Standard Registered Clinical/soCial sTudy Number (ISRCTN) as a clinical trial ( ISRCTN31994827 ) on 3rd October 2007.

Which symptoms are linked to a delayed presentation among melanoma patients? A retrospective study.

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.

Ethnic differences in cancer symptom awareness and barriers to seeking medical help in England.

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=38 492) 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 help-seeking. 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.

Role of general practice in the diagnosis of oral cancer.

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.

Risk factors and time to symptomatic presentation in leukaemia, lymphoma and myeloma.

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.

Socioeconomic inequalities in attitudes towards cancer: an international cancer benchmarking partnership study.

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.

Offering informed choice about breast screening.

Over the last few years, there has been growing international concern about the risk of overdiagnosis in breast screening and about how to communicate this to women. There has also been an increasing policy drive to provide people with information to enable them to make an informed choice about screening. In response to this, a novel approach to developing the information about cancer screening has been adopted in England. This approach has integrated the perspectives of people eligible for screening, and experts in public engagement, informed choice, and communicating risk, as well as experts in screening. New information based on this approach has been provided to women invited for breast screening from September 2013. The new information explicitly sets out the choice to be made, and provides much more detail than previous information about overdiagnosis, the balance of benefits and harms, and the scientific uncertainties. The novel approach has also been adopted to develop new information for the bowel and cervical screening programmes in England, and could provide a model for communicating about cancer screening in other countries.

Communicating the benefits and harms of cancer screening.

Breast and cervical screening each have a distinct balance of benefits and harms. While they are both likely to reduce mortality, breast screening is associated with a greater relative frequency of serious harms than cervical screening. A unique approach has been adopted in England with respect to providing information on cancer screening with the goal of facilitating informed choice. The new materials provide more detail than previous information about the benefits and harms of screening as well as the scientific uncertainties. While there is a uniform format and the information covers the same key issues in both breast and cervical screening programmes, the emphasis and detail varies according to balance of benefits and harms within these programmes.

Promoting early presentation of breast cancer: a preliminary evaluation of a written intervention.

OBJECTIVES: Older women are more likely to delay presentation with breast cancer, which contributes to poorer survival. We evaluated a written intervention that was designed to provide women with the knowledge, motivation, confidence and skills to present promptly with breast cancer symptoms. METHODS: We assessed acceptability and understanding of the intervention by interviewing 43 women. We used their responses to refine the intervention. We tested the effect of the intervention on breast cancer awareness, confidence and intentions to check breasts and perceived barriers to help-seeking using a self-report questionnaire administered to 61 women prior to and one month after receiving the intervention. Quantitative data were analysed using the McNemar test. RESULTS: Women were not made anxious by the intervention and understood its messages. At one month, a greater proportion of women knew that breast cancer risk increases with age, identified ≥5 non-lump symptoms and reported breast checking at least monthly in comparison to before the intervention was implemented. DISCUSSION: The intervention does not induce anxiety, is understandable, and appears to increase breast cancer awareness. The results provide justification for a more rigorous trial to test efficacy.

Measuring the nature and duration of symptoms of cervical cancer in young women: developing an interview-based approach.

BACKGROUND: Some young women experience delays in diagnosis of cervical cancer, but little research about ways of studying these delays has been published. A major challenge is that gynaecological symptoms are common in young women, but cervical cancer is rare. This study describes the development and testing of a measure for studying delays in diagnosis in young women with cervical cancer. METHODS: Prospective development of an interview measure and testing of its ability to reliably and systematically collect relevant data in two large hospitals in London, UK using 27 women aged 18-40 diagnosed with cervical cancer in the previous two years. We developed a semi-structured interview schedule and data extraction form to systematically collect data on symptoms (including nature and duration) and risk factors for delayed diagnosis from young women with cervical cancer. We piloted the measure among young women with cervical cancer (audiorecording it with their permission), refining it iteratively. To complete the measure, we developed a database for managing the data and a manual for using the schedule. Two researchers extracted data from the recorded interviews to assess inter-rater reliability. RESULTS: The final interview schedule yielded quantitative data on the nature and duration of symptoms and risk factors for delayed diagnosis. Inter-rater reliability was high. In the pilot, 12 of the 27 women were diagnosed via symptomatic presentation. Median time from the symptom triggering presentation to presentation was one month (interquartile range 0-4 months). Median time from presentation to diagnosis was three months (interquartile range 1-8.5 months). CONCLUSIONS: We have developed a reliable tool for measuring the nature and duration of symptoms in young women with cervical cancer. Pilot data suggest that a substantial proportion of women experience delay between first presentation and diagnosis.

Promoting early presentation of breast cancer in older women: implementing an evidence-based intervention in routine clinical practice.

Background. Women over 70 with breast cancer have poorer one-year survival and present at a more advanced stage than younger women. Promoting early symptomatic presentation in older women may reduce stage cost effectively and is unlikely to lead to overdiagnosis. After examining efficacy in a randomised controlled trial, we piloted a brief health professional-delivered intervention to equip women to present promptly with breast symptoms, as an integral part of the final invited mammogram at age ~70, in the English National Health Service Breast Screening Programme. Methods. We trained mammographers, who then offered the intervention to older women in four breast screening services. We examined breast cancer awareness at baseline and one month in women receiving the intervention, and also in a service where the intervention was not offered. Results. We trained 27 mammographers to deliver the intervention confidently to a high standard. Breast cancer awareness increased 7-fold at one month in women receiving the intervention compared with 2-fold in the comparison service (odds ratio 15.2, 95% confidence interval 10.0 to 23.2). Conclusions. The PEP Intervention can be implemented in routine clinical practice with a potency similar to that achieved in a randomised controlled trial. It has the potential to reduce delay in diagnosis for breast cancer in older women.

An international measure of awareness and beliefs about cancer: development and testing of the ABC.

OBJECTIVES: To develop an internationally validated measure of cancer awareness and beliefs; the awareness and beliefs about cancer (ABC) measure. DESIGN AND SETTING: Items modified from existing measures were assessed by a working group in six countries (Australia, Canada, Denmark, Norway, Sweden and the UK). Validation studies were completed in the UK, and cross-sectional surveys of the general population were carried out in the six participating countries. PARTICIPANTS: Testing in UK English included cognitive interviewing for face validity (N=10), calculation of content validity indexes (six assessors), and assessment of test-retest reliability (N=97). Conceptual and cultural equivalence of modified (Canadian and Australian) and translated (Danish, Norwegian, Swedish and Canadian French) ABC versions were tested quantitatively for equivalence of meaning (≥4 assessors per country) and in bilingual cognitive interviews (three interviews per translation). Response patterns were assessed in surveys of adults aged 50+ years (N≥2000) in each country. MAIN OUTCOMES: Psychometric properties were evaluated through tests of validity and reliability, conceptual and cultural equivalence and systematic item analysis. Test-retest reliability used weighted-κ and intraclass correlations. Construction and validation of aggregate scores was by factor analysis for (1) beliefs about cancer outcomes, (2) beliefs about barriers to symptomatic presentation, and item summation for (3) awareness of cancer symptoms and (4) awareness of cancer risk factors. RESULTS: The English ABC had acceptable test-retest reliability and content validity. International assessments of equivalence identified a small number of items where wording needed adjustment. Survey response patterns showed that items performed well in terms of difficulty and discrimination across countries except for awareness of cancer outcomes in Australia. Aggregate scores had consistent factor structures across countries. CONCLUSIONS: The ABC is a reliable and valid international measure of cancer awareness and beliefs. The methods used to validate and harmonise the ABC may serve as a methodological guide in international survey research.

Involving users in the design of a randomised controlled trial of an intervention to promote early presentation in breast cancer: qualitative study.

BACKGROUND: The purpose of this study was to explore women's views of the design of a large pragmatic cost-effectiveness randomised controlled trial of the policy of offering a health professional-delivered intervention to promote early presentation with breast symptoms in older women and thereby improve survival, with a view to informing protocol development. The trial will recruit over 100,000 healthy women aged 67+, and outcome data will be collected on those who develop breast cancer. The scale of the trial and the need for long-term follow-up presented a number of design challenges in relation to obtaining consent, ascertaining and contacting participants who developed breast cancer, and collecting outcome data. METHODS: Qualitative study involving 69 women participating in 7 focus groups and 17 in-depth interviews. 15 women had a previous diagnosis of breast cancer and 54 did not. RESULTS: The women held strong views and had a good understanding of the rationale of the design of clinical trials. The women recognised that in a very large trial with long-term follow-up it was necessary to incorporate design features to make the trial feasible and efficient. Most strikingly, they supported the idea of opt-out consent and identifying women with breast cancer using routine datasets. CONCLUSIONS: This model of user involvement engaged women well with the design challenges of the trial and led to improvements to the protocol. The study strengthens the case for user involvement, in particular through focus groups and in-depth interviews, in the design of trials.

Validation of a measurement tool to assess awareness of breast cancer.

AIM: Until now, there has been no universally accepted and validated measure of breast cancer awareness. This study aimed to validate the new Breast Cancer Awareness Measure (BCAM) which assesses, using a self-complete questionnaire, knowledge of breast cancer symptoms and age-related risk, and frequency of breast checking. METHODS: We measured the psychometric properties of the BCAM in 1035 women attending the NHS Breast Screening Programme: acceptability was assessed using a feedback questionnaire (n=292); sensitivity to change after an intervention promoting breast cancer awareness (n=576), and test-retest reliability (n=167). We also assessed readability, and construct validity using the 'known-groups' method. RESULTS: The readability of the BCAM was high. Over 90% of women found it acceptable. The BCAM was sensitive to change: there was an increase in the proportion of women obtaining the full score for breast cancer awareness one month after receiving the intervention promoting breast cancer awareness; this was greater among those who received a more intensive version (less intensive version (booklet): 9.3%, 95% confidence interval (CI): 4.5-14.1%; more intensive version (interaction with health professional plus booklet): 30%, 95% CI: 23.4-36.6%). Test-retest reliability of the BCAM was moderate to good for most items. Cancer experts had higher levels of cancer awareness than non-medical academics (50% versus 6%, p=0.001), indicating good construct validity. CONCLUSIONS: The BCAM is a valid and robust measure of breast cancer awareness suitable for use in surveys of breast cancer awareness in the general population and to evaluate the impact of awareness-raising interventions.

Women's preferences for the delivery of the National Health Service Breast Screening Programme: a cross-sectional survey.

OBJECTIVE: To elicit women's preferences for delivery of the National Health Service (NHS) Breast Screening Programme. DESIGN: Interview survey. SETTING: Private households in the UK. POPULATION: Five hundred and ninety-seven women aged 45-75 interviewed as part of the National Statistics Omnibus Survey, December 2008 and January 2009. OUTCOMES: Preferred setting (hospital or community) and preferred type of screening unit (mobile or permanent). Rated importance of distance, time, convenience and cost of travelling to a screening unit. RESULTS: Forty per cent of women did not mind whether the screening unit was based in a community or hospital setting, and 52% did not mind whether the unit was permanent or mobile. Among those who expressed a preference, 59% preferred a hospital to a community setting, and 62% preferred a permanent to a mobile unit. Many women (63%) said distance to a breast screening unit was an important factor, as was time to travel (58%). Among those with access to a car, 80% regarded the availability of parking as important, but only 40% regarded the cost of car travel as important. Among women with no access to a car, there was a similar pattern for ease of public transport (76%) and cost of public transport (48%). CONCLUSIONS: Many women were unconcerned about the type and setting of breast screening units. Among those who were concerned, most preferred hospital over community settings and permanent over mobile units, but nonetheless most women said time and distance were important. Well-situated units with advanced publicity about public transport links and parking facilities may encourage greater uptake.

Chronic exposure to outdoor air pollution and diagnosed cardiovascular disease: meta-analysis of three large cross-sectional surveys.

BACKGROUND: Higher exposure to outdoor air pollution is associated with increased cardiopulmonary deaths, but there is limited evidence about the association between outdoor air pollution and diagnosed cardiovascular disease. Our study aimed to estimate the size of the association between long term exposure to outdoor air pollution and prevalent cardiovascular disease. METHODS: We carried out a cross-sectional analysis of data on more than 19,000 white adults aged 45 and older who participated in three representative surveys of the English population in 1994, 1998 and 2003, examining the relationship between self-reported doctor-diagnosed cardiovascular disease and exposure to outdoor air pollutants using multilevel regression techniques and meta-analysis. RESULTS: The combined estimates suggested that an increase of 1 microg m-3 in concentration of particulate matter less than 10 microns in diameter was associated with an increase of 2.9% (95% CI -0.6% to 6.5%) in prevalence of cardiovascular disease in men, and an increase of 1.6% (95%CI -2.1% to 5.5%) in women. The year-specific analyses showed strongly positive associations in 2003 between odds of cardiovascular disease in both men and women and exposure to particulate matter but not in 1994 or 1998. We found no consistent associations between exposure to gaseous air pollutants and doctor-diagnosed cardiovascular disease. CONCLUSION: The associations of prevalent cardiovascular disease with concentration of particulate matter less than 10 microns in diameter, while only weakly positive, were consistent with the effects reported in cohort studies. The results provide evidence of the size of the association between particulate air pollution and the prevalence of cardiovascular disease but no evidence for an association with gaseous pollutants. We found strongly positive associations between particulate matter and cardiovascular disease in 2003 only, which highlights the importance of replicating findings in more than one population.

Chronic exposure to outdoor air pollution and markers of systemic inflammation.

BACKGROUND: Cohort studies suggest that long-term exposure to higher levels of outdoor air pollution increases risk of developing cardiovascular disease. One suggested mechanism is that air pollution, especially particulate matter, induces systemic inflammation, thereby increasing the risk of developing long-term pathologic changes in the cardiovascular system, We aimed to examine the association between long-term exposure to higher levels of air pollution and chronic systemic inflammation. METHODS: We examined the relationship between 2 markers of systemic inflammation (fibrinogen and C-reactive protein) and measures of outdoor air pollution estimated for each postcode sector of residence, using models incorporating information on pollutant emissions from multiple sources, and atmospheric dispersion and processing, in 3 representative cross-sectional studies of the English population in 1994, 1998, and 2003. These included about 25,000 adults with fibrinogen measurements and 17,000 adults with C-reactive protein measurements. We used multilevel linear regression modeling and pooled the results from the 3 surveys using meta-analysis. RESULTS: We found no associations between concentrations of fibrinogen or C-reactive protein and measures of outdoor air pollution (particulate matter <10 mum in diameter (PM10), nitrogen dioxide, sulfur dioxide, and ozone). Specifically, we found, for each 1-microg/m(3) [corrected] increase in PM(10) concentration, a change in fibrinogen concentrations of -0.08% (95% confidence interval = -0.25 to [corrected] 0.10) and in C-reactive protein concentrations of 0.14% (-1.00 to [corrected] 1.30). CONCLUSIONS: Our findings do not support the hypothesis that the association between outdoor air pollution exposure and later cardiovascular disease is mediated by chronic systemic inflammation.