Jonathan Banks

Preferences for cancer investigation: a vignette-based study of primary-care attendees

BACKGROUND The UK lags behind many European countries in terms of cancer survival. Initiatives to address this disparity have focused on barriers to presentation, symptom recognition, and referral for specialist investigation. Selection of patients for further investigation has come under particular scrutiny, although preferences for referral thresholds in the UK population have not been studied. We investigated preferences for diagnostic testing for colorectal, lung, and pancreatic cancers in primary-care attendees. METHODS In a vignette-based study, researchers recruited individuals aged at least 40 years attending 26 general practices in three areas of England between Dec 6, 2011, and Aug 1, 2012. Participants completed up to three of 12 vignettes (four for each of lung, pancreatic, and colorectal cancers), which were randomly assigned. The vignettes outlined a set of symptoms, the risk that these symptoms might indicate cancer (1%, 2%, 5%, or 10%), the relevant testing process, probable treatment, possible alternative diagnoses, and prognosis if cancer were identified. Participants were asked whether they would opt for diagnostic testing on the basis of the information in the vignette. FINDINGS 3469 participants completed 6930 vignettes. 3052 individuals (88%) opted for investigation in their first vignette. We recorded no strong evidence that participants were more likely to opt for investigation with a 1% increase in risk of cancer (odds ratio [OR] 1·02, 95% CI 0·99-1·06; p=0·189), although the association between risk and opting for investigation was strong when colorectal cancer was analysed alone (1·08, 1·03-1·13; p=0·0001). In multivariable analysis, age had an effect in all three cancer models: participants aged 60-69 years were significantly more likely to opt for investigation than were those aged 40-59 years, and those aged 70 years or older were less likely. Other variables associated with increased likelihood of opting for investigation were shorter travel times to testing centre (colorectal and lung cancers), a family history of cancer (colorectal and lung cancers), and higher household income (colorectal and pancreatic cancers). INTERPRETATION Participants in our sample expressed a clear preference for diagnostic testing at all risk levels, and individuals want to be tested at risk levels well below those stipulated by UK guidelines. This willingness should be considered during design of cancer pathways, particularly in primary care. The public engagement with our study should encourage general practitioners to involve patients in referral decision making. FUNDING The National Institute for Health Research Programme Grants for Applied Research programme.

Responding to symptoms suggestive of lung cancer: a qualitative interview study

Background Late diagnosis of lung cancer can impact on survival rates. Patients delay seeking help for a number of reasons. This study explored symptom appraisal and help-seeking decisions among patients referred to specialist respiratory services with symptoms suggestive of lung cancer. Methods In-depth qualitative interviews with patients as soon as possible after referral, ideally before diagnosis and mainly within 10 weeks, explored factors impacting on their pathways prior to referral. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients’ beliefs and experiences, disease factors and healthcare professional influences. Results 35 patients were interviewed (aged 41–88 years, 15 women, 17 with lung cancer). All described similar presenting symptoms and triggers to seek help. Appraisal of symptoms was influenced by whether they had a lung comorbidity; seriousness of symptoms was interpreted within the context of previous illness experiences. Help-seeking was triggered when: symptoms failed to respond as expected; there was an increased awareness of symptoms of lung cancer; the public nature of a cough meant others were able to endorse help-seeking. Almost half visited the general practitioner (GP) two or more times before referral; during this period they reinterpreted initial symptoms and appraised new symptoms. The meaning given to symptoms changed over time and many became increasingly concerned they may have lung cancer. The GP played a role in ensuring timely further help-seeking but often there was little guidance on how to monitor symptoms or when to reconsult. Conclusions Patients diagnosed with and without lung cancer had similar symptom pathways. Findings provide guidance for lung cancer awareness campaigns on the importance of social networks in endorsing patient help-seeking. The importance of appropriate advice, monitoring and safety-netting procedures by GPs for people presenting with symptoms suggestive of lung cancer is also highlighted.

Evaluating the transferability of a hospital-based childhood obesity clinic to primary care: a randomised controlled trial

BACKGROUND The Care Of Childhood Obesity (COCO) clinic at the Bristol Royal Hospital for Children (BRHC) uses a multidisciplinary approach comprising a consultant, dietitian, and exercise specialist. The clinic has demonstrated efficacy in managing childrens weight but similar clinics are scarce in the UK. AIM This pilot randomised controlled trial (RCT) aimed to examine the feasibility of undertaking a fully powered RCT and to gauge whether the COCO model could be effective as a nurse-led clinic in primary care settings. DESIGN AND SETTING Patients were randomised to a hospital-based childhood obesity clinic or a nurse-led clinic in a primary care setting in south-west England. METHOD Children aged 5-16 years with a body mass index (BMI) ≥98th centile were referred by GPs to the consultant in charge of the COCO clinic at BRHC. Referred children were clinically screened for suitability and invited into the study. Consenting families were randomised to BRHC or a primary care clinic (PCC) and offered five appointments over 12 months. Clinical effectiveness was measured by change in body mass index standard deviation score (BMI SDS) at 12 months. Other measures included: treatment adherence, quality of life (QOL), and satisfaction. Feasibility was examined by assessing referral, screening, and recruitment data. RESULTS A total 152 patients were referred by GPs: 31 (20%) were screened out; 45 (30%) declined to participate. Seventy-six (50%) patients were randomised and 68 provided baseline data (PCC = 42; BRHC = 26); 52 provided outcome data (PCC = 29; BRHC = 23). Mean change in BMI SDS was PCC -0.17 (95% confidence interval [CI] = -0.27 to -0.07); BRHC -0.15 (95% CI = -0.26 to -0.05). QOL, adherence, and satisfaction data indicated similar positive patterns in both trial arms. CONCLUSION Screening and recruitment data indicate that primary care is a clinically appropriate setting and acceptable to families. The primary clinical outcome measure (reduction in BMI SDS), along with secondary outcome measures, indicate that primary care has the potential to be effective in providing weight management for children, using the COCO model.

Identifying families' reasons for engaging or not engaging with childhood obesity services: A qualitative study.

The rise in childhood obesity in recent years has been accompanied by a number of initiatives to treat the condition. However, such interventions have often been characterised by poor levels of adherence to treatment and corresponding high attrition rates. This article presents data drawn from qualitative interviews to examine families’ reasons for engaging or not engaging with child obesity services. Interviews took place with 15 families whose children attended a UK-based childhood obesity service and 17 families whose children withdrew from treatment. Our data suggested that involvement of children in the decision to attend a clinic was important in building engagement. Specialist diet and exercise advice tailored to individual family circumstance encouraged clinic engagement, but failed to engage some families who felt their personal circumstances had not been considered sufficiently. The clinic environment was viewed as not age appropriate for some children and did not match the expectations of some families. Our findings highlight the value of involving children in the decision to attend an obesity service and practitioners should, as much as possible, tailor advice to the circumstances of each family. Providing clinics for particular age groups in terms of environment and timing may enhance engagement with services.

Symptom appraisal and healthcare-seeking for symptoms suggestive of colorectal cancer: a qualitative study

Objectives Timely diagnosis of colorectal cancer is important to improve survival. This study explored symptom appraisal and help-seeking among patients referred to specialist services with symptoms of colorectal cancer. Design Qualitative in-depth interview study. Setting and participants Participants were recruited on referral to gastroenterology clinics (North East and East of England); interviews were conducted soon after referral. We purposively sampled participants to ensure a range of accounts in terms of age, sex, diagnosis and geographical location. Methods Data collection and analysis were underpinned by the Model of Pathways to Treatment. Framework analysis was used to explore the data within and across cases, focusing on patient beliefs and experiences, disease factors and healthcare influences. Results 40 participants were interviewed (aged 43–87 years, 17 women, 18 diagnosed with colorectal cancer). Patients diagnosed with and without colorectal cancer had similar symptom pathways. We found a range of interacting and often competing biopsychosocial, contextual and cultural influences on the way in which people recognised, interpreted and acted on their symptoms. People attempted to ‘maintain normality’ through finding benign explanations for their symptoms. Bodily changes were appraised within the context of usual bowel patterns, comorbidities and life events, and decisions to seek help were made in relation to expectations about the course of symptoms. The ‘private nature’ of colorectal cancer symptoms could affect both their identification and discussions with others including healthcare professionals. Within the context of the National Health Service, people needed to legitimise appropriate use of healthcare services and avoid being thought of as wasting doctors’ time. Conclusions Findings provide guidance for awareness campaigns on reducing stigma around appraising and discussing bowel movements, and the importance of intermittent and non-specific symptoms. Altering perceptions about the appropriate use of health services could have a beneficial effect on time to presentation.

Ethnic differences in patients’ preferences for prostate cancer investigation: a vignette-based survey in primary care

BACKGROUND Minority ethnic groups in the UK have worse outcomes for some cancer types compared with the white majority. Black males have worse staging at diagnosis of prostate cancer and often present as emergencies, suggesting possible delays in the diagnostic pathway. Delay may arise from lower awareness of cancer symptoms, reluctance to report symptoms, reduced desire for investigation, or a combination of these. Reduced desire for investigation was examined in this study AIM To investigate whether black males in the UK would choose to be tested for prostate cancer compared with the white majority. DESIGN AND SETTING A vignette (hypothetical scenario)-based, electronic survey of male patients aged ≥40 years from four general practices in Bristol, UK. METHOD The vignettes described possible prostate cancer symptoms (equating to risk levels of 2%, 5%, and 10%), investigative procedures, and possible outcomes. Participants indicated whether they would choose investigation in these scenarios. Analysis used logistic regression, with preference for investigation as the outcome variable and ethnicity as the main explanatory variable. RESULTS In total, 449 (81%) of 555 participants opted for investigation, regardless of risk levels; of these, the acceptance rate was 94% (251 out of 267) among white males and 70% (198 out of 285) among black males. In multivariable analyses, preference for investigation was lower in black males, even after controlling for relevant confounding factors including specific risk level (odds ratio 0.13; 95% confidence interval = 0.07 to 0.25; P<0.001). CONCLUSION Black males are less likely to opt for investigation at any risk level of prostate cancer compared with white males. This may explain some of their late-stage presentation at diagnosis and subsequent poorer outcomes.

Decision making and referral from primary care for possible lung and colorectal cancer: a qualitative study of patients' experiences

BACKGROUND The challenge for GPs when assessing whether to refer a patient for cancer investigation is that many cancer symptoms are also caused by benign self-limiting illness. UK National Institute for Health and Care Excellence (NICE) referral guidelines emphasise that the patient should be involved in the decision-making process and be informed of the reasons for referral. Research to date, however, has not examined the extent to which these guidelines are borne out in practice. AIM To assess the degree to which patients are involved in the decision to be referred for investigation for symptoms associated with cancer and their understanding of the referral. DESIGN AND SETTING Qualitative interview study of patients referred to secondary care for symptoms suspicious of lung and colorectal cancer. Patients were recruited from two regions of England using maximum variation sampling. METHOD Transcribed interviews were analysed thematically. RESULTS The analysis was based on 34 patient interviews. Patients in both symptom pathways reported little involvement in the decision to be referred for investigation. This tended to be accompanied by a patient expectation for referral, however, to explain ongoing and un-resolving symptoms. It was also found that reasons for referral tended to be couched in non-specific terms rather than cancer investigation, even when the patient was on a cancer-specific pathway. CONCLUSION GPs should consider a more overt discussion with patients when referring them for further investigation of symptoms suspicious of cancer. This would align clinical practice with NICE guidelines and encourage more open discussion between GPs and primary care patients around cancer.

Understanding symptom appraisal and help-seeking in people with symptoms suggestive of pancreatic cancer: a qualitative study

Objective Pancreatic cancer has poor survival rates due to non-specific symptoms leading to later diagnosis. Understanding how patients interpret their symptoms could inform approaches to earlier diagnosis. This study sought to explore symptom appraisal and help-seeking among patients referred to secondary care for symptoms suggestive of pancreatic cancer. Design Qualitative analysis of semistructured in-depth interviews. Data were analysed iteratively and thematically, informed by the Model of Pathways to Treatment. Participants and setting Pancreatic cancer occurs rarely in younger adults, therefore patients aged ≥40 years were recruited from nine hospitals after being referred to hospital with symptoms suggestive of pancreatic cancer; all were participants in a cohort study. Interviews were conducted soon after referral, and where possible, before diagnosis. Results Twenty-six interviews were conducted (cancer n=13 (pancreas n=9, other intra-abdominal n=4), non-cancer conditions n=13; age range 48–84 years; 14 women). Time from first symptoms to first presentation to healthcare ranged from 1 day to 270 days, median 21 days. We identified three main themes. Initial symptom appraisal usually began with intermittent, non-specific symptoms such as tiredness or appetite changes, attributed to diet and lifestyle, existing gastrointestinal conditions or side effects of medication. Responses to initial symptom appraisal included changes in meal type or frequency, or self-medication. Symptom changes such as alterations in appetite and enjoyment of food or weight loss usually prompted further appraisal. Triggers to seek help included a change or worsening of symptoms, particularly pain, which was often a ‘tipping point’. Help-seeking was often encouraged by others. We found no differences in symptom appraisal and help-seeking between people diagnosed with cancer and those with other conditions. Conclusions Greater public and healthcare professional awareness of the combinations of subtle and intermittent symptoms, and their evolving nature, is needed to prompt timelier help-seeking and investigation among people with symptoms of pancreatic cancer.

Using willingness-to-pay to establish patient preferences for cancer testing in primary care

BackgroundShared decision making is a stated aim of several healthcare systems. In the area of cancer, patients’ views have informed policy on screening and treatment but there is little information about their views on diagnostic testing in relation to symptom severity.MethodsWe used the technique of willingness-to-pay to determine public preferences around diagnostic testing for colorectal, lung, and pancreatic cancer in primary care in the UK. Participants were approached in general practice waiting rooms and asked to complete a two-stage electronic survey that described symptoms of cancer, the likelihood that the symptoms indicate cancer, and information about the appropriate diagnostic test. Part 1 asked for a binary response (yes/no) as to whether they would choose to have a test if it were offered. Part 2 elicited willingness-to-pay values of the tests using a payment scale followed by a bidding exercise, with the aim that these values would provide a strength of preference not detectable using the binary approach.ResultsA large majority of participants chose to be tested for all cancers, with only colonoscopy (colorectal cancer) demonstrating a risk gradient. In the willingness-to-pay exercise participants placed a lower value on an X-ray (lung cancer) than the tests for colorectal or pancreatic cancer and X-ray was the only test where risk was clearly related to the willingness-to-pay value.ConclusionWillingness-to-pay values did not enhance the binary responses in the way intended; participants appeared to be motivated differently when responding to the two parts of the questionnaire. More work is needed to understand how participants perceive risk in this context and how they respond to questions about willingness-to-pay. Qualitative methods could provide useful insights.

Implementing online consultations in primary care: a mixed-method evaluation extending normalisation process theory through service co-production

Objectives To examine patient and staff views, experiences and acceptability of a UK primary care online consultation system and ask how the system and its implementation may be improved. Design Mixed-method evaluation of a primary care e-consultation system. Setting Primary care practices in South West England. Methods Qualitative interviews with 23 practice staff in six practices. Patient survey data for 756 e-consultations from 36 practices, with free-text survey comments from 512 patients, were analysed thematically. Anonymised patients’ records were abstracted for 485 e-consultations from eight practices, including consultation types and outcomes. Descriptive statistics were used to analyse quantitative data. Analysis of implementation and the usage of the e-consultation system were informed by: (1) normalisation process theory, (2) a framework that illustrates how e-consultations were co-produced and (3) patients’ and staff touchpoints. Results We found different expectations between patients and staff on how to use e-consultations ‘appropriately’. While some patients used the system to try and save time for themselves and their general practitioners (GPs), some used e-consultations when they could not get a timely face-to-face appointment. Most e-consultations resulted in either follow-on phone (32%) or face-to-face appointments (38%) and GPs felt that this duplicated their workload. Patient satisfaction of the system was high, but a minority were dissatisfied with practice communication about their e-consultation. Conclusions Where both patients and staff interact with technology, it is in effect ‘co-implemented’. How patients used e-consultations impacted on practice staff’s experiences and appraisal of the system. Overall, the e-consultation system studied could improve access for some patients, but in its current form, it was not perceived by practices as creating sufficient efficiencies to warrant financial investment. We illustrate how this e-consultation system and its implementation can be improved, through mapping the co-production of e-consultations through touchpoints.