General Practice and Primary Care - Research Publications
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ItemThis isn't what mine looked like': a qualitative study of symptom appraisal and help seeking in people recently diagnosed with melanoma(BMJ PUBLISHING GROUP, 2014)OBJECTIVE: To explore symptom appraisal and help-seeking decisions among patients recently diagnosed with melanomas, and to compare experiences of people with 'thinner' (<1 mm) and 'thicker' (>2 mm) melanomas, as thickness at diagnosis is an important prognostic feature. METHODS: In-depth interviews with patients within 10 weeks of melanoma diagnosis explored the factors impacting on their pathways to diagnosis. 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 (HCP) influences. RESULTS: 63 patients were interviewed (29-93 years, 31 women, 30 thicker melanomas). All described their skin changes using rich lay vocabulary. Many included unassuming features such as 'just a little spot' as well as common features of changes in size, colour and shape. There appeared to be subtly different patterns of symptoms: descriptions of vertical growth, bleeding, oozing and itch were features of thicker melanomas irrespective of pathological type. Appraisal was influenced by explanations such as normal life changes, prior beliefs and whether skin changes matched known melanoma descriptions. Most decisions to seek help were triggered by common factors such as advice from family and friends. 11 patients reported previous reassurance about their skin changes by a HCP, with little guidance on monitoring change or when it would be appropriate to re-consult. CONCLUSIONS: Patients diagnosed with both thinner and thicker melanomas often did not initially recognise or interpret their skin changes as warning signs or prompts to seek timely medical attention. The findings provide guidance for melanoma awareness campaigns on more appropriate images, helpful descriptive language and the need to stress the often apparently innocuous nature of potentially serious skin changes. The importance of appropriate advice, monitoring and safety-netting procedures by HCPs for people presenting with skin changes is also highlighted.
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ItemChronic disease prevention in primary care: how and when will genomics impact?(ROYAL COLL GENERAL PRACTITIONERS, 2014-07)
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ItemA qualitative exploration of the use of calendar landmarking instruments in cancer symptom research(BIOMED CENTRAL LTD, 2014-10-25)BACKGROUND: Late diagnosis is considered to be a major factor contributing to poorer cancer survival rates in the UK. Interventions have focussed on the promotion of earlier diagnosis in patients with potential cancer symptoms. However, to assess the effectiveness of these interventions, the time from symptom onset to presentation needs to be reliably and accurately measured. This qualitative study explored the use of calendar landmarking instruments in cancer symptom research. METHODS: We performed a secondary analysis of transcripts of interviews using the calendar landmarking instrument, undertaken with patients who had either been diagnosed with cancer (n = 40, IRCO study, Western Australia), or who had symptoms suggestive of cancer (n = 38, SYMPTOM study, North East and Eastern England). We used constant comparison methods to identify use of the calendar landmarking instruments and the impact of their application. RESULTS: The calendar landmarking instrument appeared to help many patients, either by acting as a prompt or helping to refine recall of events. A combination of personal (e.g. birthday) and national (e.g. Christmas) landmarks seemed to be the most effective. Calendar landmarking instruments appeared more useful where the time period between onset of symptoms and date of first consultation was less than three months. The interviewee's age, gender and cancer type did not appear to influence whether or not the instrument facilitated recall, and there were no instances where the use of the instrument resulted in the disclosure of a new first symptom. Symptoms of similar chronic conditions could create difficulties when applying the instrument; it was difficult for these participants to characterise and disentangle their symptoms which prompted their decisions to seek help. Some participants tended to prefer to use their own, already personalised, diaries to assist in their recall of events. CONCLUSIONS: This study is the first to describe the potential role of calendar landmarking instruments to support research interviews which explore symptoms and events along the cancer diagnostic pathway. The major challenge remains as to whether they actually improve accuracy of recall.
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ItemVariation in promptness of presentation among 10,297 patients subsequently diagnosed with one of 18 cancers: Evidence from a National Audit of Cancer Diagnosis in Primary Care(WILEY, 2014-09-01)Cancer awareness public campaigns aim to shorten the interval between symptom onset and presentation to a doctor (the 'patient interval'). Appreciating variation in promptness of presentation can help to better target awareness campaigns. We explored variation in patient intervals recorded in consultations with general practitioners among 10,297 English patients subsequently diagnosed with one of 18 cancers (bladder, brain, breast, colorectal, endometrial, leukaemia, lung, lymphoma, melanoma, multiple myeloma, oesophageal, oro-pharyngeal, ovarian, pancreatic, prostate, renal, stomach, and unknown primary) using data from of the National Audit of Cancer Diagnosis in Primary Care (2009-2010). Proportions of patients with 'prompt'/'non-prompt' presentation (0-14 or 15+ days from symptom onset, respectively) were described and respective odds ratios were calculated by multivariable logistic regression. The overall median recorded patient interval was 10 days (IQR 0-38). Of all patients, 56% presented promptly. Prompt presentation was more frequent among older or housebound patients (p < 0.001). Prompt presentation was most frequent for bladder and renal cancer (74% and 70%, respectively); and least frequent for oro-pharyngeal and oesophageal cancer (34% and 39%, respectively, p <.001). Using lung cancer as reference, the adjusted odds ratios of non-prompt presentation were 2.26 (95% confidence interval 1.57-3.25) and 0.42 (0.34-0.52) for oro-pharyngeal and bladder cancer, respectively. Sensitivity analyses produced similar findings. Routinely recorded patient interval data reveal considerable variation in the promptness of presentation. These findings can help to prioritise public awareness initiatives and research focusing on symptoms of cancers associated with greater risk of non-prompt presentation, such as oro-pharyngeal and oesophageal cancer.
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ItemPROSPECTIV-a pilot trial of a nurse-led psychoeducational intervention delivered in primary care to prostate cancer survivors: study protocol for a randomised controlled trial(BMJ PUBLISHING GROUP, 2014)BACKGROUND: Prostate cancer survivors can experience physical, sexual, psychological and emotional problems, and there is evidence that current follow-up practices fail to meet these men's needs. Studies show that secondary and primary care physicians see a greater role for primary care in delivering follow-up, and that primary care-led follow-up is acceptable to men with prostate cancer. METHODS AND ANALYSIS: A two-phase study with target population being men who are 9-24 months from diagnosis. Phase 1 questionnaire aims to recruit 300 men and measure prostate-related quality of life and unmet needs. Men experiencing problems with urinary, bowel, sexual or hormonal function will be eligible for phase 2, a pilot trial of a primary care nurse-led psychoeducational intervention. Consenting eligible participants will be randomised either to intervention plus usual care, or usual care alone (40 men in each arm). The intervention, based on a self-management approach, underpinned by Bandura's Social Cognitive Theory, will provide advice and support tailored to these men's needs and address any problems they are experiencing. Telephone follow-up will take place at 6 months. Study outcomes will be measured by a questionnaire at 7 months. Phase 1 will allow us to estimate the prevalence of urinary, sexual, bowel and hormone-related problems in prostate cancer survivors and the level of unmet needs. 'Usual care' will also be documented. Phase 2 will provide information on recruitment and retention, acceptability of the intervention/outcome measures, effect sizes of the intervention and cost-effectiveness data, which is required to inform development of a larger, phase 3 randomised controlled trial. The main outcome of interest is change in prostate-cancer-related quality of life. Methodological issues will also be addressed. ETHICS AND DISSEMINATION: Ethics approval has been gained (Oxford REC A 12/SC/0500). Findings will be disseminated in peer-reviewed journals, at conferences, through user networks and relevant clinical groups. TRIAL REGISTRATION NUMBER: ISRCTN 97242511.
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Item'Looking for the needle in the haystack': a qualitative study of the pathway to diagnosis of type 1 diabetes in children(BMJ PUBLISHING GROUP, 2013)OBJECTIVE: To explore the pathway to diagnosis of type 1 diabetes (T1D) in children from the perspective of the child, family and general practitioner (GP). DESIGN: Qualitative interview study. PARTICIPANTS: Parents of children aged 1 month to 16 years diagnosed with new onset T1D within the previous 3 months, children over 6 years diagnosed with new onset T1D within the previous 3 months and GPs who saw those children prior to diagnosis. SETTING: Children and parents were identified and recruited from two hospitals within the East of England. RESULTS: The parents of 16 children (2-16 years) were interviewed. The total interval from onset of symptoms to diagnosis ranged from 6 to 127 days. The appraisal interval was the longest for almost all children and the diagnostic interval the shortest. Even with some knowledge of T1D, it took many parents several weeks of a complex cyclical and iterative decision-making process and often a physical trigger, such as weight loss, to decide to consult a healthcare professional. By that stage, many had already made or suspected the diagnosis of T1D themselves. Five GPs were interviewed. They felt that the main challenges to diagnosing T1D in children were the rarity of the condition coupled with how well most of the children appeared, and the difficulty in obtaining urine or blood samples from children. CONCLUSIONS: This study highlights the difficulties for parents and GPs in recognising the early symptoms of T1D. It suggests that future interventions should be targeted at parents in the appraisal interval and include the importance of timely presentation to a healthcare professional and the differences between types 1 and 2 diabetes. Primary care physicians should also take parental concerns seriously and do urine dipstick tests during the consultation for children with symptoms of T1D.
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ItemThe risk of oesophago-gastric cancer in symptomatic patients in primary care: a large case-control study using electronic records(NATURE PUBLISHING GROUP, 2013-01-15)BACKGROUND: Over 15 000 new oesophago-gastric cancers are diagnosed annually in the United Kingdom, with most being advanced disease. We identified and quantified features of this cancer in primary care. METHODS: Case-control study using electronic primary-care records of the UK patients aged ≥40 years was performed. Cases with primary oesophago-gastric cancer were matched to controls on age, sex and practice. Putative features of cancer were identified in the year before diagnosis. Odds ratios (ORs) were calculated for these features using conditional logistic regression, and positive predictive values (PPVs) were calculated. RESULTS: A total of 7471 cases and 32 877 controls were studied. Sixteen features were independently associated with oesophago-gastric cancer (all P<0.001): dysphagia, OR 139 (95% confidence interval 112-173); reflux, 5.7 (4.8-6.8); abdominal pain, 2.6 (2.3-3.0); epigastric pain, 8.8 (7.0-11.0); dyspepsia, 6 (5.1-7.1); nausea and/or vomiting, 4.9 (4.0-6.0); constipation, 1.5 (1.2-1.7); chest pain, 1.6 (1.4-1.9); weight loss, 8.9 (7.1-11.2); thrombocytosis, 2.4 (2.0-2.9); low haemoglobin, 2.4 (2.1-2.7); low MCV, 5.2 (4.2-6.4); high inflammatory markers, 1.7 (1.4-2.0); raised hepatic enzymes, 1.3 (1.2-1.5); high white cell count, 1.4 (1.2-1.7); and high cholesterol, 0.8 (0.7-0.8). The only PPV >5% in patients ≥55 years was for dysphagia. In patients <55 years, all PPVs were <1%. CONCLUSION: Symptoms of oesophago-gastric cancer reported in secondary care were also important in primary care. The results should inform guidance and commissioning policy for upper GI endoscopy.
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ItemIncreasing awareness of gynaecological cancer symptoms: a GP perspective(ROYAL COLL GENERAL PRACTITIONERS, 2014-06)BACKGROUND: In the UK there has been an effort, through the National Awareness and Early Diagnosis Initiative (NAEDI), to increase early stage diagnoses and ultimately cancer survival. Encouraging early symptom presentation through awareness-raising activities in primary care is one method to achieve this goal. Understanding GPs' views about this type of activity, however, is crucial prior to implementation. AIM: To describe GPs' attitudes to raising public awareness of gynaecological cancers, and their views about the potential impact on primary care services. DESIGN AND SETTING: An online survey with a convenience sample recruited from 1860 UK general practices. METHOD: An invitation was emailed to GPs via practice managers and included a weblink to a draft education leaflet and an online survey about the impact of sending a leaflet giving information about symptoms associated with gynaecological cancers to all women on GPs' lists. Participants could offer additional free text comments which were coded using content analysis. RESULTS: A total of 621 GPs participated. Most (77%, 477) felt that raising awareness of cancers was important. Only half (50%, 308), however, indicated that they would distribute such a leaflet from their practice. Barriers to implementation included concerns about financial costs; emotional impact on patients; increased demand for appointments and diagnostic services, such as ultrasound. CONCLUSIONS: GPs were generally positive about an intervention to improve patients' awareness of gynaecological cancers, but had concerns about increasing rates of presentation. There is a need for research quantifying the benefits of earlier diagnosis against resource costs such as increased consultations, investigations, and referrals.
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ItemDiagnosing cancer in the bush: a mixed methods study of GP and specialist diagnostic intervals in rural Western Australia(OXFORD UNIV PRESS, 2013-10)BACKGROUND: Previous studies have focused on the treatment received by rural cancer patients and have not examined their diagnostic pathways as reasons for poorer outcomes in rural Australia. OBJECTIVES: To compare and explore diagnostic pathways and diagnostic intervals in patients with breast, lung, prostate or colorectal cancer from rural Western Australia (WA) to inform future interventions aimed at reducing time to cancer diagnosis. METHODS: Mixed methods study of people recently diagnosed with breast, lung, prostate or colorectal cancer from the Goldfields and Great Southern Regions of WA. Qualitative interviews explored participants' diagnostic pathways and factors underlying differences observed between individuals and cancers. Data were extracted from general practice and hospital records to calculate intervals from first presentation in general practice to final diagnosis. RESULTS: Sixty-six participants were recruited (43 Goldfields and 23 Great Southern region; 24 breast, 20 colorectal, 14 prostate and 8 lung cancers). There were significant overall differences between cancers in time from presentation in general practice to referral (P = 0.045), from referral to seeing a specialist (P = 0.010) and from specialist appointment to cancer diagnosis (P ≤ 0.001). These differences were due to the nature of presenting symptoms, access to diagnostic tests and multiple visits to specialists. Breast cancer was diagnosed more quickly because its symptoms are more specific and due to better access to diagnostic tests and specialist one-stop clinics. CONCLUSIONS: Interventions to improve cancer diagnosis in rural Australia should focus on better case selection in general practice and better access to diagnostic tests, especially for prostate and colorectal cancers.
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ItemResponding to symptoms suggestive of lung cancer: a qualitative interview study.(BMJ, 2014)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.