28 results on '"Sally Stapley"'
Search Results
2. Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort
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Eleanor Dawson, Rachel Collins, Claire Pentecost, Sally Stapley, Catherine Quinn, Catherine Charlwood, Christina Victor, and Linda Clare
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coping ,Sociology and Political Science ,qualitative ,General Social Sciences ,General Medicine ,isolation ,Alzheimer’s ,COVID - Abstract
Data access statement: IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/854293 INCLUDE data were deposited with the UK data archive in June 2022 and will be available to access from July 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/855800/ Background and objectives: People with dementia have been affected in unique ways during the COVID-19 pandemic. It is not known whether the impact of the pandemic has changed with time or with the changes in social restrictions. This study explored how experiences of coping with the effects of the pandemic in the UK changed over time. Research design and methods: We conducted semi-structured interviews with people with dementia living in the community in England and Wales who had taken part in a qualitative interview at an earlier stage of the pandemic. We applied framework analysis to identify themes and compared these with interviewees’ previous accounts. Findings: Nine people aged between 51 and 89 years were interviewed; four were female and five had early onset dementia. We identified three themes: 1. Navigating a changing world: Living with coronavirus; 2. A ‘downward spiral’: Managing advancing dementia; and 3. Availability, accessibility, and suitability of support. Findings reflect participants’ ongoing caution about re-emerging from social restrictions to resume valued activities, and how this led to coping behaviours to minimise the impact on wellbeing in the absence of formal support and services. Discussion and implications: Despite easing of restrictions across the UK, the negative impact of the coronavirus pandemic on people with dementia continues. Whilst individuals and services have adapted to some of the challenges, there is now an opportunity to rebuild support networks and services to ensure people with dementia are suitably advised, supported and socially engaged to allow them to live as well as possible. ESRC, NIHR and Alzheimer’s Society
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- 2023
3. Effects of social restrictions on people with dementia and carers during the pre‐vaccine phase of the <scp>COVID</scp> ‐19 pandemic: Experiences of <scp>IDEAL</scp> cohort participants
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Claire Pentecost, Rachel Collins, Sally Stapley, Christina Victor, Catherine Quinn, Alexandra Hillman, Rachael Litherland, Louise Allan, and Linda Clare
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Sociology and Political Science ,pandemic ,vaccine ,Health Policy ,Public Health, Environmental and Occupational Health ,carers ,qualitative analysis ,Alzheimer's disease ,Alzheimer’s disease ,Social Sciences (miscellaneous) - Abstract
Copyright © 2022 The Author(s). This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community during a period of ongoing restrictions before the COVID-19 vaccination roll-out in England and Wales. We conducted semi-structured interviews with 11 people with dementia and 10 carers (including 3 dyads) living in the community in England and Wales. Participants were recruited during November and December 2020. We used framework analysis to identify issues and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers were aware of changes in the person with dementia and an increase in caring responsibilities and for some, there was a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of returning to ‘normal’ where not returning to usual activities made things worse. People with dementia and carers had feelings of neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic when comparing themselves to others in society, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and socially active and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic highlighting the importance of health and community groups and how services can find ways to support, include and interact with people with dementia and carers during and after social restrictions. ‘Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers (INCLUDE)’ was funded by the Economic and Social Research Council (ESRC) through grant ES/V004964/1. Investigators: Clare, L., Victor, C., Matthews, F., Quinn, C., Hillman, A., Burns, A., Allan, L., Litherland, R., Martyr, A., Collins, R., & Pentecost, C. ESRC is part of UK Research and Innovation (UKRI); ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: http://reshare.ukdataservice.ac.uk/854293/; ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001; Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. L. Clare and L Allan acknowledge support from the NIHR Applied Research Collaboration South-West Peninsula. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer’s Society. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.
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- 2022
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4. 'Caring beyond capacity' during the coronavirus pandemic: the experiences of family caregivers of people with dementia from the IDEAL cohort
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Sally Stapley, Claire Pentecost, Rachel Collins, Catherine Quinn, Eleanor Dawson, Jeanette Thom, and Linda Clare
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health care facilities, manpower, and services ,health care economics and organizations - Abstract
Some carers of people with dementia have reported increased caring demands and carer stress during the COVID-19 pandemic. Carers’ experiences during this time may also have implications for resilience. As part of the INCLUDE component of the IDEAL cohort study, the overall aim of this subtle realist qualitative study was to explore family carer experiences of caring for someone with dementia one year into the COVID-19 pandemic in England, and to consider the study findings in relation to resilience frameworks in dementia caregiving. Seven family carers of people living with mild-to-moderate dementia were interviewed, and themes derived using framework analysis. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and ‘caring beyond capacity’ due to unmet needs within the caring role and caring in isolation from family and professional support. Findings provide evidence that trait resilience approaches fail to account for important aspects of carers’ experiences, highlighting the range of contextual factors which influence experiences of the caregiving role, lending support to transactional resilience frameworks. More importantly than building individual resilience, timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.
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- 2022
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5. Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohort
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Sally Stapley, Claire Pentecost, Rachel Collins, Catherine Quinn, Eleanor Dawson, Robin Morris, Serena Sabatini, Jeanette Thom, and Linda Clare
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Health (social science) ,Arts and Humanities (miscellaneous) ,Social Psychology ,Public Health, Environmental and Occupational Health ,Geriatrics and Gerontology - Abstract
The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.
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- 2022
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6. Clinical features of bowel disease in patients aged <50 years in primary care: a large case-control study
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Elizabeth A Shephard, Sally Stapley, Deborah Alsina, Greg Rubin, Matthew D. Rutter, and William Hamilton
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Adult ,Male ,medicine.medical_specialty ,Adolescent ,diagnosis ,Colorectal cancer ,Colonoscopy ,Disease ,Inflammatory bowel disease ,Diagnosis, Differential ,Young Adult ,03 medical and health sciences ,0302 clinical medicine ,Internal medicine ,medicine ,Humans ,Prospective Studies ,030212 general & internal medicine ,Referral and Consultation ,general practice ,Hematology ,medicine.diagnostic_test ,Thrombocytosis ,business.industry ,Research ,Case-control study ,Odds ratio ,Middle Aged ,colorectal neoplasms ,Inflammatory Bowel Diseases ,medicine.disease ,digestive system diseases ,Surgery ,signs and symptoms ,Case-Control Studies ,Female ,030211 gastroenterology & hepatology ,Family Practice ,business - Abstract
BackgroundIncidences of colorectal cancer (CRC) and inflammatory bowel disease (IBD) are increasing in those aged AimTo identify and quantify clinical features in primary care of CRC/IBD in those aged Design and settingMatched case-control study using primary care records from the Clinical Practice Research Datalink, UK.MethodIncident cases (aged n = 1661) and IBD (n = 9578) diagnosed between 2000 and 2013 were each matched with up to three controls (n = 3979 CRC; n = 22 947 IBD). Odds ratios (OR) and positive predictive values (PPV) were estimated for features of CRC/IBD in the year before diagnosis.ResultsTen features were independently associated with CRC/IBD (all P3% for rectal bleeding with diarrhoea, thrombocytosis, low MCV, low haemoglobin or raised inflammatory markers; for change in bowel habit with low MCV, thrombocytosis or low haemoglobin; and for diarrhoea with thrombocytosis.ConclusionThis study quantified the risk of serious bowel disease in symptomatic patients aged
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- 2017
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7. Performance characteristics of visualising the cervix in symptomatic young females: a review of primary care records in females with and without cervical cancer
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Willie Hamilton, Peter Sasieni, A. Hollingworth, Anita Wey Wey Lim, and Sally Stapley
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Cervical cancer ,Gynecology ,medicine.medical_specialty ,education.field_of_study ,medicine.diagnostic_test ,Referral ,Obstetrics ,business.industry ,Medical record ,Population ,Cancer ,Physical examination ,medicine.disease ,03 medical and health sciences ,0302 clinical medicine ,medicine.anatomical_structure ,030220 oncology & carcinogenesis ,medicine ,030212 general & internal medicine ,Young adult ,Family Practice ,education ,business ,Cervix - Abstract
Background The current strategy for timely detection of cervical cancer in young females centres on visualising the cervix when females present with gynaecological symptoms, but is based on expert opinion without an evidence base. Aim To assess visualising the cervix in primary care in young females with gynaecological symptoms. Design and setting A review of primary care records for females in England aged 20–29 years with cervical cancer (nationwide interview-based study) and in the general population (Clinical Practice Research Datalink database). Method From primary care records the proportion of females was identified with gynaecological symptoms who had documented cervical examination in the year before diagnosis (cancers) and in 1-year age bands (general population). Of these, the proportion was identified that was then referred for suspected malignancy. Results Only 39% of young females with cervical cancer had documented examination at symptomatic presentation. Visualisation resulted in referral for suspected malignancy for 18% of those examined (95% confidence interval = 5% to 40%). Very few ( Conclusion The sensitivity of cervical examination to detect cancer is very low, highlighting the need for better triage tools for primary care. Until such tools are identified GPs should continue to consider cervical cancer when symptoms persist and the cervix is not obviously abnormal on clinical examination. Further research on additional triage tools such as cervical cytology used as a diagnostic aid is needed urgently.
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- 2016
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8. ‘Did not attends’ in children 0-10: a scoping review
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Helen Roberts, Sally Stapley, and Lisa Arai
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Service (business) ,medicine.medical_specialty ,Conceptualization ,Public Health, Environmental and Occupational Health ,Alternative medicine ,Audit ,Safeguarding ,Nursing ,Work (electrical) ,Family medicine ,Pediatrics, Perinatology and Child Health ,Developmental and Educational Psychology ,medicine ,Anxiety ,medicine.symptom ,Patient participation ,Psychology ,health care economics and organizations - Abstract
Patients who do not attend (‘DNA’) health appointments have been identified as a service problem incurring significant costs to the NHS. In order to explore the causes, effects and costs of child DNAs, we carried out a scoping study to map the literature and identify gaps in the research. Given the breadth of issues underpinning DNAs, a scoping study, including research studies, audits, policy documents and conference abstracts, was the most useful way to map the field. To foster public and patient participation, we sought advice from parents participating in the National Children's Bureau's Family Research Advisory Group. From a pool of 1997 items, we found few UK studies with non-attendance of 0–10 year olds as a primary focus, though many more incidentally reported DNA rates. Overall, four topics predominated: the conceptualization of DNAs; the correlates of non-attendance; initiatives to reduce non-attendance; and the relationship between non-attendance and safeguarding. The Family Research Advisory Group identified broadly similar issues, but with a stronger emphasis on communication and practical matters. While there may be circumstances where failing to attend appointments makes little or no difference to a child (or even benefits them) it is likely that there are children whose health or well-being are compromised as a result of failing to attend appointments. Both ‘over’ and ‘under'-attendance can be a source of anxiety to health professionals. Areas where further work is needed include robust evaluation of the effectiveness, cost-effectiveness and maintenance of measures to reduce DNAs and a better understanding of the relationship of safeguarding to non-attendance.
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- 2013
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9. Clinical features of bladder cancer in primary care
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Elizabeth A Shephard, Peter G. Rose, Richard D Neal, Sally Stapley, Fiona M Walter, and William Hamilton
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Gynecology ,medicine.medical_specialty ,Abdominal pain ,Bladder cancer ,business.industry ,Colorectal cancer ,Medical record ,Disease ,medicine.disease ,urologic and male genital diseases ,female genital diseases and pregnancy complications ,Interquartile range ,Internal medicine ,Medicine ,Dysuria ,medicine.symptom ,Family Practice ,business ,Ovarian cancer - Abstract
BACKGROUND: Bladder cancer accounts for over 150,000 deaths worldwide. No screening is available, so diagnosis depends on investigations of symptoms. Of these, only visible haematuria has been studied in primary care. AIM: To identify and quantify the features of bladder cancer in primary care. DESIGN AND SETTING: Case-control study, using electronic medical records from UK primary care. METHOD: Participants were 4915 patients aged ≥40 years, diagnosed with bladder cancer January 2000 to December 2009, and 21,718 age, sex, and practice-matched controls, were selected from the General Practice Research Database, UK. All clinical features independently associated with bladder cancer using conditional logistic regression were identified, and their positive predictive values for bladder cancer, singly and in combination, were estimated. RESULTS: Cases consulted their GP more frequently than controls before diagnosis: median 15 consultations (interquartile range 9-22) versus 8 (4-15): P
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- 2016
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10. The risk of pancreatic cancer in symptomatic patients in primary care: a large case-control study using electronic records
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Sally Stapley, Fiona M Walter, Richard D Neal, William Hamilton, Peter W Rose, and Tim J Peters
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Adult ,Diarrhea ,Male ,Risk ,Cancer Research ,medicine.medical_specialty ,Abdominal pain ,Nausea ,Vomiting ,diagnosis ,pancreatic cancer ,MEDLINE ,Jaundice ,Gastroenterology ,primary care ,Pancreatic cancer ,Internal medicine ,positive predictive values ,Weight Loss ,medicine ,Humans ,Aged ,Aged, 80 and over ,Primary Health Care ,business.industry ,Case-control study ,Cancer ,Odds ratio ,Middle Aged ,medicine.disease ,Abdominal Pain ,Pancreatic Neoplasms ,Oncology ,Databases as Topic ,Back Pain ,Case-Control Studies ,Clinical Study ,symptoms ,Female ,medicine.symptom ,business ,Constipation - Abstract
Background: Over 8000 new pancreatic cancers are diagnosed annually in the UK; most at an advanced stage, with only 3% 5-year survival. We aimed to identify and quantify the risk of pancreatic cancer for features in primary care. Methods: A case-control study using electronic primary care records identified and quantified the features of pancreatic cancer. Cases, aged ≥ 40 in the General Practice Research Database, UK, with primary pancreatic cancer were matched with controls on age, sex and practice. Putative features of pancreatic cancer were identified in the year before diagnosis. Odds ratios (OR) were calculated for features of cancer using conditional logistic regression. Positive predictive values (PPV) were calculated for consulting patients. Results: In all, 3635 cases and 16 459 controls were studied. Nine features were associated with pancreatic cancer (all P1%. Conclusion: Most previously reported symptoms of pancreatic cancer were also relevant in primary care. Although predictive values were small-apart from jaundice-they provide a basis for selection of patients for investigation, especially with multiple symptoms. © 2012 Cancer Research UK All rights reserved.
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- 2016
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11. The risk of oesophago-gastric cancer in symptomatic patients in primary care: A large case-control study using electronic records
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Sally Stapley, Peter W Rose, William Hamilton, Tim J Peters, Fiona M Walter, and Richard D Neal
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Adult ,Male ,Risk ,Cancer Research ,medicine.medical_specialty ,Esophageal Neoplasms ,Vomiting ,diagnosis ,Primary care ,Gastroenterology ,oesophago-gastric cancer ,primary care ,Stomach Neoplasms ,positive predictive values ,Internal medicine ,Weight Loss ,medicine ,Humans ,Endoscopy, Digestive System ,Aged ,Aged, 80 and over ,Primary Health Care ,business.industry ,Cancer ,Nausea ,Middle Aged ,medicine.disease ,Abdominal Pain ,Oesophago-gastric cancer ,Oncology ,Case-Control Studies ,Clinical Study ,symptoms ,Female ,business ,Constipation - Abstract
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 P5% in patients 55 years was for dysphagia. In patients 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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- 2016
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12. Do educational interventions improve nurses’ clinical decision making and judgement? A systematic review
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Sally Stapley and Carl Thompson
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business.industry ,Decision theory ,Decision Making ,Judgement ,Psychological intervention ,MEDLINE ,Nurses ,CINAHL ,PsycINFO ,Outcome and Process Assessment, Health Care ,Patient Education as Topic ,Nursing ,Nursing Interventions Classification ,Humans ,Medicine ,business ,General Nursing ,Randomized Controlled Trials as Topic ,Decision analysis - Abstract
Objectives Despite the growing popularity of decision making in nursing curricula, the effectiveness of educational interventions to improve nursing judgement and decision making is unknown. We sought to synthesise and summarise the comparative evidence for educational interventions to improve nursing judgements and clinical decisions. Design A systematic review. Data sources Electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, CINAHL and PsycINFO, Social Sciences Citation Index, OpenSIGLE conference proceedings and hand searching nursing journals. Review methods Studies published since 1960, reporting any educational intervention that aimed to improve nurses' clinical judgements or decision making were included. Studies were assessed for relevance and quality. Data extracted included study design; educational setting; the nature of participants; whether the study was concerned with the clinical application of skills or the application of theory; the type of decision targeted by the intervention (e.g. diagnostic reasoning) and whether the evaluation of the intervention focused on efficacy or effectiveness. A narrative approach to study synthesis was used due to heterogeneity in interventions, study samples, outcomes and settings and incomplete reporting of effect sizes. Results From 5262 initial citations 24 studies were included in the review. A variety of educational approaches were reported. Study quality and content reporting was generally poor. Pedagogical theories were widely used but use of decision theory (with the exception of subjective expected utility theory implicit in decision analysis) was rare. The effectiveness and efficacy of interventions was mixed. Conclusions Educational interventions to improve nurses' judgements and decisions are complex and the evidence from comparative studies does little to reduce the uncertainty about ‘what works'. Nurse educators need to pay attention to decision, as well as pedagogical, theory in the design of interventions. Study design and reporting requires improvement to maximise the information contained in reports of educational interventions.
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- 2011
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13. Gynaecological symptoms reported by young women: examining the potential for earlier diagnosis of cervical cancer
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William Hamilton and Sally Stapley
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Adult ,medicine.medical_specialty ,Metrorrhagia ,Adolescent ,Uterine Cervical Neoplasms ,Menstruation ,Young Adult ,medicine ,Humans ,Vaginal bleeding ,Young adult ,Referral and Consultation ,Cervix ,Early Detection of Cancer ,Retrospective Studies ,Cervical cancer ,business.industry ,Obstetrics ,Age Factors ,Cancer ,Retrospective cohort study ,medicine.disease ,United Kingdom ,medicine.anatomical_structure ,Gynecology ,Cohort ,Female ,medicine.symptom ,Family Practice ,business - Abstract
Background Cervical cancer occurs at a younger age than most adult cancers. A pre-malignant stage can be identified at screening and treated. Screening begins at the age of 25 years in England, so in women younger than this, and in those who decline screening, cervical cancer can only be identified with symptoms. Aim. To identify the frequency of attendance for gynaecological conditions by young English women. Design Historical cohort study using electronic primary care records. Methods A cohort of English women aged 15-29 years was prepared from the General Practice Research Database. All gynaecological consultations were identified and collated. Frequencies of gynaecological consultation were analysed in three age bands: 15-19, 20-24 and 25-29 years and by calendar year. Results The number of women available for study for each year ranged from 32 968 to 45 807. The percentage of women having any gynaecological consultation increased from 17.7% to 33.3% over the 7 years. If contraception is excluded, the percentages are 11.3% in 2003, rising to 20.1% in 2009. The rise in consultations occurred in all age bands and across most symptom categories. Post-coital bleeding and inter-menstrual bleeding-the two classic presentations of cervical cancer-were reported by 0.5% and 1.6% of women in 2009. Conclusions Gynaecological complaints are frequent in primary care, though the symptoms of possible cervical cancer only represent a small minority of the total. Although the chance of cancer in young women with abnormal vaginal bleeding is very small, visualization of the cervix is appropriate.
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- 2011
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14. No one listens to me, nobody believes me: Self management and the experience of living with encephalitis
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Ava Easton, Karl Atkin, and Sally Stapley
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Adult ,Male ,Coping (psychology) ,medicine.medical_specialty ,Health (social science) ,nobody ,Interviews as Topic ,Interpersonal relationship ,Cost of Illness ,History and Philosophy of Science ,Social medicine ,Adaptation, Psychological ,medicine ,Humans ,Interpersonal Relations ,Diagnostic Errors ,Psychiatry ,Qualitative Research ,Aged ,Physician-Patient Relations ,Medical sociology ,Self-management ,Social perception ,business.industry ,Middle Aged ,Self Care ,Social Perception ,Patient Satisfaction ,Chronic Disease ,Encephalitis ,Female ,business ,Social psychology ,Qualitative research - Abstract
Over the past twenty years, there has been considerable interest in individuals' experience of chronic illness. In addition to the more established concerns of medical sociology, recent policy reflects an interest in how individuals manage their condition. Using material from qualitative interviews with 23 individuals carried out in the United Kingdom, this paper examines a person's experience following encephalitis, as a way of exploring the potential value of current policy initiatives associated with self-management. Our findings suggest that individuals' illness experiences become embedded in conditional acceptance derived from and sustained through their social relationships. This raises a fundamental policy tension: is the purpose of current self-management strategies to help individuals cope better with illness or with the context in which their illness experience is realised? We conclude that policy needs to question how it 'imagines' long-standing conditions, without recourse to generalised notions of coping and adjustment. This, in turn, means adapting a less instrumental and more contextualised approach to self-management.
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- 2010
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15. Pathways to the diagnosis of ovarian cancer in the UK: a cohort study in primary care
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Deborah Sharp, William Hamilton, Jacqueline Barrett, Sally Stapley, and C Stabb
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Gynecology ,Pediatrics ,medicine.medical_specialty ,Referral ,business.industry ,Obstetrics and Gynecology ,Cancer ,Primary care ,medicine.disease ,Abdominal mass ,Interquartile range ,medicine ,medicine.symptom ,Medical diagnosis ,business ,Ovarian cancer ,Cohort study - Abstract
Please cite this paper as: Barrett J, Sharp D, Stapley S, Stabb C, Hamilton W. Pathways to the diagnosis of ovarian cancer in the UK: a cohort study in primary care. BJOG 2010;117:610–614. Objective To identify the routes patients with ovarian cancer take between first symptom presentation and diagnosis. Design Cohort study. Setting The study took place in 39 general practices in Devon, UK. Population All ovarian cancer patients identified in the practices, with a diagnosis between 2000 and 2007 inclusive. Methods All patients had their cancer symptoms, referrals, and diagnoses identified and dated using their doctors’ records. Main outcome measures Numbers of patients taking specific routes to diagnosis, together with the time taken to diagnosis. Results Three main routes to diagnosis emerged. The first was the expected route of outpatient referral: 195 (92% of the total) had at least one of the seven ovarian cancer symptoms or an abdominal mass. A total of 123 (58%) were referred to a specialist, although only 65 (31%) were referred to a gynaecologist. Thirty-five (17%) were initially investigated within primary care by ultrasound scanning, and a further 35 (17%) were admitted as emergencies. The interval from first symptom to referral was similar across the different pathways, with a median (interquartile range) time between the first symptom presenting to primary care and first investigation or referral being 2.5 (0, 27.5) days. The median interval from first symptom reported in primary care to diagnosis was 74.5 (32, 159) days. Conclusions Only a minority of ovarian cancer patients follow the expected route to diagnosis, of urgent referral to a gynaecologist. In most women, GPs rapidly identified the need to investigate. Avoidable delays generally occurred after the decision to investigate was made.
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- 2010
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16. What Happens to New-Onset Headache in Children That Present to Primary Care? A Case-Cohort Study Using Electronic Primary Care Records
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David Kernick, Sally Stapley, William Hamilton, and John Campbell
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Male ,Pediatrics ,medicine.medical_specialty ,Headache Disorders, Primary ,Adolescent ,Databases, Factual ,Pizotifen ,Cohort Studies ,Quality of life ,medicine ,Electronic Health Records ,Humans ,Risk factor ,Child ,Depression (differential diagnoses) ,Primary Health Care ,Brain Neoplasms ,business.industry ,Cluster headache ,General Medicine ,Prognosis ,medicine.disease ,Cerebrovascular Disorders ,Migraine ,Child, Preschool ,Female ,Neurology (clinical) ,Headaches ,medicine.symptom ,business ,Hydrocephalus ,medicine.drug ,Cohort study - Abstract
The aim was to describe the consulting behaviour and clinical outcomes of children presenting with headache in primary care. This was a historical cohort study using data from the UK General Practitioner Research Database. Cases were children aged 5-17 years who presented to primary care with primary headache (migraine, tension-type headache, cluster headache) or undifferentiated headache (no further descriptor). Controls were age, sex and practice matched. Their records were examined for consultations, referrals, relevant treatments and specific diseases in the subsequent year. Children with headache ( n = 48 575) were identified and matched to controls. At presentation, 9321 (19.2%) of headaches were labelled primary, 549 (1.1%) secondary and 38 705 (79.7%) received no formal diagnosis. Of the latter group, 2084 (5.4%) received a primary headache diagnosis in the subsequent year. Following a diagnosis of migraine, 258 (3.5%) had received a triptan and 1598 (21%) were using propranolol or pizotifen. Total consultations were higher in cases than in controls in the year before the headache: cases ages 5-8 years, mean (S.D.) 5.0 (4.0) consultations; controls 4.0 (3.5) consultations. In 1 year controls had 43 430 consultations, of which 256 (0.6%) were for headache, of whom 64 (25%) were referred to secondary care. Headache was a risk factor for benign and malignant tumours, cerebrovascular disease, primary disorders of raised intracranial pressure and depression. This risk was reduced if a diagnosis of a primary headache disorder could be made. Although there is an increased likelihood of a serious pathology with headache presentations, the risk is small particularly if a diagnosis of a primary headache is made. General practitioners are likely to be underdiagnosing migraine. This study can inform management guidelines for new presentations of headache in primary care, particularly when a secondary pathology is suspected.
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- 2009
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17. What Happens to New-Onset Headache Presented to Primary Care? A Case-Cohort Study Using Electronic Primary Care Records
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Sally Stapley, William Hamilton, David Kernick, and Peter J. Goadsby
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Pediatrics ,medicine.medical_specialty ,business.industry ,Cluster headache ,Case-control study ,General Medicine ,medicine.disease ,Natural history ,Migraine ,medicine ,Physical therapy ,Neurology (clinical) ,Arteritis ,Headaches ,medicine.symptom ,business ,Stroke ,Cohort study - Abstract
In the UK, 4± of general practitioner consultations are for headache, yet the natural history of these presentations is unknown. The objective of this study was to describe the outcome of new headache presentations to the general practitioner. This was a prospective case-control study in adults over a period of 1 year using data from the General Practitioner Research Database, UK. Records of patients who presented with primary headache (migraine, tension-type headache, cluster headache) or undifferentiated headache (no further descriptor) were examined for the subsequent year for subarachnoid haemorrhage, primary brain tumour, benign space-occupying lesion, temporal arteritis, stroke and transient ischaemic attack. We identified 21 758 primary headaches and 63 921 undifferentiated headaches. The likelihood ratio was 29 (9.9, 92) for a subarachnoid haemorrhage after an undifferentiated headache and increased with age. The 1-year risk of a malignant brain tumour with new undifferentiated headache was 0.15±, rising to 0.28± above the age of 50 years. For primary headache the risk was 0.045±. The risk for a benign space-occupying lesion was 0.05± for an undifferentiated and 0.009± for a primary headache. The risk of temporal arteritis was the highest of the conditions studied, 0.66± in the undifferentiated and 0.18± in the primary headache group. Accepting the limitations of this approach, our data can inform management guidelines for new presentations of headache in primary care and confirm the need for follow-up, even if a primary headache diagnosis is made.
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- 2008
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18. Clinical features of metastatic cancer in primary care: a case–control study using medical records
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Peter W Rose, William Hamilton, Sally Stapley, Deborah Sharp, and Jacqueline Barrett
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Male ,medicine.medical_specialty ,Lung Neoplasms ,Vomiting ,Appetite ,Bone Neoplasms ,Breast Neoplasms ,Medical Records ,Metastasis ,Pleural disease ,Prostate cancer ,Shoulder Pain ,Internal medicine ,medicine ,Odds Ratio ,Humans ,Primary Health Care ,business.industry ,Brain Neoplasms ,Research ,Liver Neoplasms ,Case-control study ,Cancer ,Prostatic Neoplasms ,Odds ratio ,medicine.disease ,Low back pain ,United Kingdom ,Surgery ,Logistic Models ,Case-Control Studies ,Practice Guidelines as Topic ,Female ,medicine.symptom ,Family Practice ,business ,Colorectal Neoplasms ,Low Back Pain - Abstract
Background How metastatic cancer initially presents is largely unknown. Aim To identify clinical features of metastatic cancer in primary care. Design and setting Case–control study in 11 general practices in Devon, UK. Method Cases of patients who had died with metastatic breast, colorectal, or prostate cancer were selected. In addition, two control groups were formed of patients with the same primary cancer but without metastases (‘cancer controls’) and patients without cancer (‘healthy controls’), matched for age, sex, and practice. All symptoms, signs, and laboratory test abnormalities in the year before metastasis were identified. The primary analysis used conditional logistic regression. Results In total, 162 cases, 152 cancer controls, and 145 healthy controls were studied. Common symptoms associated with cancer were: vomiting, 40 (25%) cases and 13 (9%) cancer controls (multivariable odds ratio [OR] 3.5, 95% confidence interval [CI] = 1.3 to 9.4, P = 0.011); low back pain, 38 (24%) cases and 17 (11%) cancer controls (OR 2.5, 95% CI = 1.1 to 5.6, P = 0.032); loss of appetite, 32 (20%) cases and nine (6%) cancer controls (OR 4.0, 95% CI = 1.2 to 13.2, P = 0.021); and shoulder pain, 27 (17%) cases and eight (5%) cancer controls (OR 5.3, 95% CI = 1.6 to 18, P = 0.007). Groin pain was uncommon, but strongly associated (16 [10%] cases and one [1%] cancer control [OR 10, 95% CI = 1.2 to 82, P = 0.032]), as was pleural disease (nine [6%] cases and one [1%] cancer control [OR 10, 95% CI = 1.1 to 92, P = 0.038]). Conclusion These features of disseminated cancer have been reported before in studies from secondary care, but the scarcity of specific symptoms (such as local pain) and the fairly common occurrence of non-specific symptoms (vomiting and loss of appetite) is important and may explain delays in the diagnosis of metastases.
- Published
- 2015
19. The mortality of colorectal cancer in relation to the initial symptom at presentation to primary care and to the duration of symptoms: a cohort study using medical records
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William Hamilton, Sally Stapley, Deborah Sharp, and Tim J Peters
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Adult ,Diarrhea ,Male ,Cancer Research ,Abdominal pain ,medicine.medical_specialty ,diagnosis ,Colorectal cancer ,colorectal cancer ,Gastroenterology ,Medical Records ,Cohort Studies ,Predictive Value of Tests ,Internal medicine ,Weight Loss ,Clinical Studies ,Humans ,Medicine ,Aged ,Neoplasm Staging ,Aged, 80 and over ,business.industry ,Hazard ratio ,Case-control study ,Odds ratio ,Middle Aged ,medicine.disease ,mortality ,Abdominal Pain ,Cancer registry ,primary health care ,Oncology ,Case-Control Studies ,Occult Blood ,Predictive value of tests ,Female ,medicine.symptom ,Colorectal Neoplasms ,Gastrointestinal Hemorrhage ,business ,Constipation ,Cohort study - Abstract
The association between the staging of colorectal cancer and mortality is well known. Much less researched is the relationship between the duration of symptoms and outcome, and whether particular initial symptoms carry a different prognosis. We performed a cohort study of 349 patients with primary colorectal cancer in whom all their prediagnostic symptoms and investigation results were known. Survival data for 3-8 years after diagnosis were taken from the cancer registry. Six features were studied: rectal bleeding, abdominal pain, diarrhoea, constipation, weight loss, and anaemia. Two of these were significantly associated with different staging and mortality. Rectal bleeding as an initial symptom was associated with less advanced staging (odds ratio from one Duke's stage to the next 0.50, 95% confidence interval 0.31, 0.79; P=0.003) and with reduced mortality (Cox's proportional hazard ratio (HR) 0.56 (0.41, 0.79); P=0.001. Mild anaemia, with a haemoglobin of 10.0-12.9 g dl(-1), was associated with more advanced staging (odds ratio 2.2 (1.2, 4.3); P=0.021) and worse mortality (HR 1.5 (0.98, 2.3): P=0.064). When corrected for emergency admission, sex, and the site of the tumour, the HR for mild anaemia was 1.7 (1.1, 2.6); P=0.015. No relationship was found between the duration of symptoms and staging or mortality.
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- 2006
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20. Non-visible versus visible haematuria and bladder cancer risk: a study of electronic records in primary care
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Elizabeth A Shephard, Sarah Price, Kevin Barraclough, Sally Stapley, and William Hamilton
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Abdominal pain ,medicine.medical_specialty ,urologic and male genital diseases ,Risk Assessment ,Internal medicine ,Dysuria ,Odds Ratio ,Medicine ,Electronic Health Records ,Humans ,Aged ,Hematuria ,Gynecology ,Bladder cancer ,Primary Health Care ,business.industry ,Research ,Medical record ,Case-control study ,Cancer ,Odds ratio ,Middle Aged ,medicine.disease ,female genital diseases and pregnancy complications ,Confidence interval ,United Kingdom ,Abdominal Pain ,Urinary Bladder Neoplasms ,Case-Control Studies ,medicine.symptom ,Family Practice ,business - Abstract
Diagnosis of bladder cancer relies on investigation of symptoms presented to primary care, notably visible haematuria. The importance of non-visible haematuria has never been estimated.To estimate the risk of bladder cancer with non-visible haematuria.A case-control study using UK electronic primary care medical records, including uncoded data to supplement coded records.A total of 4915 patients (aged ≥40 years) diagnosed with bladder cancer between January 2000 and December 2009 were selected from the Clinical Practice Research Datalink and matched to 21 718 controls for age, sex, and practice. Variables for visible and non-visible haematuria were derived from coded and uncoded data. Analyses used multivariable conditional logistic regression, followed by estimation of positive predictive values (PPVs) for bladder cancer using Bayes' theorem.Non-visible haematuria (coded/uncoded data) was independently associated with bladder cancer: odds ratio (OR) 20 (95% confidence interval [CI] =12 to 33). The PPV of non-visible haematuria was 1.6% (95% CI = 1.2 to 2.1) in those aged ≥60 years and 0.8% (95% CI = 0.1 to 5.6) in 40-59-year-olds. The PPV of visible haematuria was 2.8% (95% CI = 2.5 to 3.1) and 1.2% (95% CI = 0.6 to 2.3) for the same age groups respectively, lower than those calculated using coded data alone. The proportion of records of visible haematuria in coded, rather than uncoded, format was higher in cases than in controls (P0.002, χ(2) test). There was no evidence for such differential recording of non-visible haematuria by case/control status (P = 0.78), although, overall, the uncoded format was preferred (P0.001).Both non-visible and visible haematuria are associated with bladder cancer, although the visible form confers nearly twice the risk of cancer compared with the non-visible form. GPs' style of record keeping varies by symptom and possible diagnosis.
- Published
- 2014
21. Comparison of cancer diagnostic intervals before and after implementation of NICE guidelines : analysis of data from the UK General Practice Research Database
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William Hamilton, Nafees Ud Din, Ben Carter, Richard D Neal, Sally Stapley, Obioha C Ukoumunne, and Greg Rubin
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Adult ,Male ,Cancer Research ,Pediatrics ,medicine.medical_specialty ,Referral ,diagnosis ,General Practice ,Diagnostic interval ,MEDLINE ,Nice ,Guidelines as Topic ,Database ,primary care ,Neoplasms ,Diagnosis ,Medicine ,cancer ,Humans ,earlier diagnosis ,NICE guidelines ,database ,Early Detection of Cancer ,computer.programming_language ,Aged ,Cancer ,urgent referral ,Primary Health Care ,business.industry ,diagnostic interval ,cohort ,Middle Aged ,medicine.disease ,Primary care ,Confidence interval ,Oncology ,Cohort ,General practice ,Symptoms ,Clinical Study ,Urgent referral ,symptoms ,Female ,business ,Database research ,computer ,Earlier diagnosis - Abstract
Background: The primary aim was to use routine data to compare cancer diagnostic intervals before and after implementation of the 2005 NICE Referral Guidelines for Suspected Cancer. The secondary aim was to compare change in diagnostic intervals across different categories of presenting symptoms. Methods: Using data from the General Practice Research Database, we analysed patients with one of 15 cancers diagnosed in either 2001–2002 or 2007–2008. Putative symptom lists for each cancer were classified into whether or not they qualified for urgent referral under NICE guidelines. Diagnostic interval (duration from first presented symptom to date of diagnosis in primary care records) was compared between the two cohorts. Results: In total, 37 588 patients had a new diagnosis of cancer and of these 20 535 (54.6%) had a recorded symptom in the year prior to diagnosis and were included in the analysis. The overall mean diagnostic interval fell by 5.4 days (95% CI: 2.4–8.5; Po0.001) between 2001–2002 and 2007–2008. There was evidence of significant reductions for the following cancers: (mean, 95% confidence interval) kidney (20.4 days, 0.5 to 41.5; P ¼ 0.05), head and neck (21.2 days, 0.2–41.6; P ¼ 0.04), bladder (16.4 days, 6.6–26.5; Pp0.001), colorectal (9.0 days, 3.2–14.8; P ¼ 0.002), oesophageal (13.1 days, 3.0–24.1; P ¼ 0.006) and pancreatic (12.6 days, 0.2–24.6; P ¼ 0.04). Patients who presented with NICE-qualifying symptoms had shorter diagnostic intervals than those who did not (all cancers in both cohorts). For the 2007–2008 cohort, the cancers with the shortest median diagnostic intervals were breast (26 days) and testicular (44 days); the highest were myeloma (156 days) and lung (112 days). The values for the 90th centiles of the distributions remain very high for some cancers. Tests of interaction provided little evidence of differences in change in mean diagnostic intervals between those who did and did not present with symptoms specifically cited in the NICE Guideline as requiring urgent referral. Conclusion: We suggest that the implementation of the 2005 NICE Guidelines may have contributed to this reduction in diagnostic intervals between 2001–2002 and 2007–2008. There remains considerable scope to achieve more timely cancer diagnosis, with the ultimate aim of improving cancer outcomes.
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- 2014
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22. GPs' classification of headache: is primary headache underdiagnosed?
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William Hamilton, Sally Stapley, and David Kernick
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Pediatrics ,medicine.medical_specialty ,Adult patients ,business.industry ,MEDLINE ,Disease ,Unmet needs ,Primary headache ,medicine ,Brief Reports ,Headaches ,medicine.symptom ,Family Practice ,business ,Primary care database ,Cohort study - Abstract
With a high economic, social, and personal burden, headache remains an important health problem. How UK GPs diagnose headache in the UK is unknown. In this study, a large primary care database was used and diagnostic categories were described for 91 121 adult patients with new-onset headache, that is, patients who had not consulted for headache in the previous year. Seventy per cent of headaches were not given a diagnostic label, 24% were diagnosed as primary, and 6% as secondary headaches. It is suggested that GPs' difficulty in diagnosing headache presentations contributes to the high level of morbidity and unmet need in this disease.
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- 2008
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23. Surgical versus non-surgical interventions for adolescent idiopathic scoliosis: a Cochrane review protocol
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Shreya Srinivas, Nachiappan Chockalingam, Sally Stapley, Julie Hogg, Razvan Taranu, Victoria Whittaker, Hans-Rudolph Weiss, Raman V. Kalyan, and Josette Bettany-Saltikov
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Protocol (science) ,medicine.medical_specialty ,business.industry ,Alternative medicine ,Psychological intervention ,Idiopathic scoliosis ,Systematic review ,Orthopedic surgery ,Physical therapy ,medicine ,Deformity ,Oral Presentation ,Orthopedics and Sports Medicine ,medicine.symptom ,business ,Surgical interventions - Abstract
Background The main aims of all clinical interventions in the treatment of adolescent idiopathic scoliosis (AIS) are to limit curve progression, restore trunk balance and prevent long-term consequences of the deformity. Two separate Cochrane reviews have already reviewed the effects of non-surgical interventions (Negrini, 2010 and Romano, 2012). A further scoping search identified four systematic reviews, however full methodological appraisals within these reviews were very limited (Weiss, 2008), indicating the need for a high-quality Cochrane review focusing on surgical interventions.
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- 2013
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24. The use of electronic databases in primary care research
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Sally Stapley, Elizabeth A Shephard, and William Hamilton
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medicine.medical_specialty ,geography ,geography.geographical_feature_category ,Databases, Factual ,business.industry ,Patient Selection ,Alternative medicine ,MEDLINE ,Library science ,Primary care ,Peninsula ,medicine ,Electronic Health Records ,Humans ,Family Practice ,business ,Randomized Controlled Trials as Topic - Abstract
DISCOVERY Research Group, Peninsula College of Medicine & Dentistry, Veysey Building, Salmon Pool Lane, Exeter, EX2 4SG, UK and Doctoral student, School of Social & Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK. *Correspondence to W Hamilton Peninsula College of Medicine & Dentistry, Veysey Building, Salmon Pool Lane, Exeter, EX2 4SG, UK; E-mail: willie.hamilton@pcmd.ac.uk Received 31 May 2011; Accepted 6 June 2011.
- Published
- 2011
25. Debridement of diabetic foot ulcers
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Sally Stapley and Jude Edwards
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Ulcer healing ,medicine.medical_specialty ,medicine.medical_treatment ,law.invention ,Randomized controlled trial ,law ,Healing rate ,Diabetes mellitus ,medicine ,Combined Modality Therapy ,Humans ,Pharmacology (medical) ,Randomized Controlled Trials as Topic ,Debridement ,business.industry ,Absolute risk reduction ,Hydrogels ,medicine.disease ,Diabetic foot ,digestive system diseases ,Diabetic Foot ,Surgery ,business ,Foot (unit) - Abstract
BACKGROUND: Foot ulceration is thought to affect 15% of people with diabetes at some time in their lives. Debridement is widely regarded as an effective intervention to speed up ulcer healing. The most effective method is unclear. OBJECTIVES: To assess the effects of debridement interventions on the healing of diabetic foot ulcers. SEARCH METHODS: For this fourth update we searched The Cochrane Wounds Group Specialised Register (searched 21 April 2011); The Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2011, Issue 2); Ovid MEDLINE (2009 to April Week 2 2011); Ovid MEDLINE (In‐Process & Other Non‐Indexed Citations, April 20, 2011); Ovid EMBASE (2009 to 2011 Week 15); and EBSCO CINAHL (2009 to 15 April 2011). SELECTION CRITERIA: Randomised controlled trials (RCTs) evaluating any method of debriding diabetic foot ulcers and measuring complete healing or rate of healing. There was no restriction on articles/trials based on language or publication status. DATA COLLECTION AND ANALYSIS: Data extraction and assessment of study quality were undertaken by one review author and checked by an Editor of the Wounds Group. MAIN RESULTS: Six RCTs of debridement were identified: four assessed hydrogels, with an additional study evaluating larval therapy against hydrogel and one evaluated surgical debridement. Pooling the three RCTs which compared hydrogel with gauze or standard care suggested that hydrogels are significantly more effective in healing diabetic foot ulcers (Relative Risk 1.84, 95% Confidence Interval (CI)1.3 to 2.61). Surgical debridement showed no significant benefit over standard treatment. One small trial, available in abstract form only, suggested that larvae resulted in a greater reduction in wound area compared with hydrogel, but this evidence has not been confirmed by publication of full trial results. Other debridement methods such as enzyme preparations or polysaccharide beads have not been evaluated in diabetic foot ulcers. AUTHORS' CONCLUSIONS: There is evidence to suggest that hydrogel increases the healing rate of diabetic foot ulcers compared with gauze dressings or standard care. There is insufficient evidence (one small trial, abstract only) of the effects of larval therapy on diabetic foot ulcers. More research is needed to evaluate the effects of a range of widely used debridement methods and of debridement per se.
- Published
- 2010
26. Meaning behind measurement: self-comparisons affect responses to health-related quality of life questionnaires
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Marion K Campbell, Graeme MacLennan, Stuart H. Ralston, Peter Fayers, William D. Fraser, Sally Stapley, Elaine McColl, Peter Selby, Anne L Langston, and Clare Robertson
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Gerontology ,Male ,medicine.medical_specialty ,Health Status ,education ,Affect (psychology) ,Quality of life (healthcare) ,Surveys and Questionnaires ,medicine ,Humans ,Meaning (existential) ,Cognitive interview ,health care economics and organizations ,Aged ,Aged, 80 and over ,Government ,Diphosphonates ,Public health ,Public Health, Environmental and Occupational Health ,Middle Aged ,Osteitis Deformans ,NASA Chief Scientist ,United Kingdom ,Alliance ,Quality of Life ,Female ,Psychology - Abstract
The subjective nature of quality of life is particularly pertinent to the domain of health-related quality of life (HRQOL) research. The extent to which participants' responses are affected by subjective information and personal reference frames is unknown. This study investigated how an elderly population living with a chronic metabolic bone disorder evaluated self-reported quality of life.Participants (n = 1,331) in a multi-centre randomised controlled trial for the treatment of Paget's disease completed annual HRQOL questionnaires, including the SF-36, EQ-5D and HAQ. Supplementary questions were added to reveal implicit reference frames used when making HRQOL evaluations. Twenty-one participants (11 male, 10 female, aged 59-91 years) were interviewed retrospectively about their responses to the supplementary questions, using cognitive interviewing techniques and semi-structured topic guides.The interviews revealed that participants used complex and interconnected reference frames to promote response shift when making quality of life evaluations. The choice of reference frame often reflected external factors unrelated to individual health. Many participants also stated that they were unclear whether to report general or disease-related HRQOL.It is important, especially in clinical trials, to provide instructions clarifying whether 'quality of life' refers to disease-related HRQOL. Information on self-comparison reference frames is necessary for the interpretation of responses to questions about HRQOL.
- Published
- 2008
27. Pathways to the diagnosis of ovarian cancer in the UK: a cohort study in primary care
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William Hamilton, Deborah Sharp, C Stabb, Sally Stapley, and Jacqueline Barrett
- Subjects
Oncology ,medicine.medical_specialty ,business.industry ,Internal medicine ,medicine ,Obstetrics and Gynecology ,Primary care ,Ovarian cancer ,medicine.disease ,business ,Cohort study - Published
- 2010
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28. Use of medication and investigations in community hospitals and a district general hospital: a cohort study of emergency admissions in the elderly
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Sandra Hollinghurst, Sally Stapley, Tania Crabb, William Hamilton, and Alison Round
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medicine.medical_specialty ,Pediatrics ,Emergency admission ,business.industry ,Public Health, Environmental and Occupational Health ,Community hospital ,Cost savings ,Quality of life ,Emergency medicine ,medicine ,General hospital ,business ,Care Planning ,Hospital stay ,Cohort study - Abstract
Background: We previously studied clinical outcomes in two cohorts of emergency admissions of patients aged over 70 to one district general hospital (DGH) or five com- munity hospitals (CHs) finding no differences in death, readmissions, or quality of life at 6 months after admission. Our objectives in this study were to examine the use and cost of medication and use and cost of investigations in the two different hospital settings. Methods: We identified and priced all medication taken on admission, during the hos- pital stay, and on discharge, and identified all investigations. The main outcome meas- ures were number and cost of medications and investigations during the stay, and the difference in the patients' routine medication before and after the hospital stay. Results: Three hundred and seventy five patients were studied (DGH 170, CH 205). The median (inter-quartile range (IQR)) number and cost of drugs used during the hospital stay was higher in DGH patients: 11 (8, 17) drugs than CH patients: 8 (5, 11); (P � 0.001), costing £35 (13, 90) and £16 (6, 45) respectively (P � 0.001). DGH patients had a mean of 0.55 drugs added to their routine medication, at an extra projected cost of £9.50 per month, whereas CH patients had an average of 0.11 drugs removed from their routine medication at a projected cost saving of £1.35 per month (P � 0.012 for number and � 0.001 for cost). More investigations were performed in the DGH than the CH; DGH median (IQR) £260 (180, 410); CH median £40 (9, 110). Conclusions: Considerable extra resources are used in emergency admissions of the elderly to a DGH. However, these extra resources do not appear to yield mortality or morbidity benefits.
- Published
- 2007
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