Sian Harrison

Validity of diagnostic coding within the General Practice Research Database: a systematic review

BACKGROUND The UK-based General Practice Research Database (GPRD) is a valuable source of longitudinal primary care records and is increasingly used for epidemiological research. AIM To conduct a systematic review of the literature on accuracy and completeness of diagnostic coding in the GPRD. DESIGN OF STUDY Systematic review. METHOD Six electronic databases were searched using search terms relating to the GPRD, in association with terms synonymous with validity, accuracy, concordance, and recording. A positive predictive value was calculated for each diagnosis that considered a comparison with a gold standard. Studies were also considered that compared the GPRD with other databases and national statistics. RESULTS A total of 49 papers are included in this review. Forty papers conducted validation of a clinical diagnosis in the GPRD. When assessed against a gold standard (validation using GP questionnaire, primary care medical records, or hospital correspondence), most of the diagnoses were accurately recorded in the patient electronic record. Acute conditions were not as well recorded, with positive predictive values lower than 50%. Twelve papers compared prevalence or consultation rates in the GPRD against other primary care databases or national statistics. Generally, there was good agreement between disease prevalence and consultation rates between the GPRD and other datasets; however, rates of diabetes and musculoskeletal conditions were underestimated in the GPRD. CONCLUSION Most of the diagnoses coded in the GPRD are well recorded. Researchers using the GPRD may want to consider how well the disease of interest is recorded before planning research, and consider how to optimise the identification of clinical events.

Cancer outcomes and all-cause mortality in adults allocated to metformin: systematic review and collaborative meta-analysis of randomised clinical trials.

Aims/hypothesisObservational studies suggest that metformin may reduce cancer risk by approximately one-third. We examined cancer outcomes and all-cause mortality in published randomised controlled trials (RCTs).MethodsRCTs comparing metformin with active glucose-lowering therapy or placebo/usual care, with minimum 500 participants and 1-year follow-up, were identified by systematic review. Data on cancer incidence and all-cause mortality were obtained from publications or by contacting investigators. For two trials, cancer incidence data were not available; cancer mortality was used as a surrogate. Summary RRs, 95% CIs and I2statistics for heterogeneity were calculated by fixed effects meta-analysis.ResultsOf 4,039 abstracts identified, 94 publications described 14 eligible studies. RRs for cancer were available from 11 RCTs with 398 cancers during 51,681 person-years. RRs for all-cause mortality were available from 13 RCTs with 552 deaths during 66,447 person-years. Summary RRs for cancer outcomes in people randomised to metformin compared with any comparator were 1.02 (95% CI 0.82, 1.26) across all trials, 0.98 (95% CI 0.77, 1.23) in a subgroup analysis of active-comparator trials and 1.36 (95% CI 0.74, 2.49) in a subgroup analysis of placebo/usual care comparator trials. The summary RR for all-cause mortality was 0.94 (95% CI 0.79, 1.12) across all trials.Conclusions/interpretationMeta-analysis of currently available RCT data does not support the hypothesis that metformin lowers cancer risk by one-third. Eligible trials also showed no significant effect of metformin on all-cause mortality. However, limitations include heterogeneous comparator types, absent cancer data from two trials, and short follow-up, especially for mortality.

Partners and close family members of long-term cancer survivors: Health status, psychosocial well-being and unmet supportive care needs

A cancer diagnosis can have a profound impact on partners and close family members of patients. Little is currently known about the long‐term impact.

Pathways to care for critically ill or injured children: a cohort study from first presentation to healthcare services through to admission to intensive care or death

Purpose Critically ill or injured children require prompt identification, rapid referral and quality emergency management. We undertook a study to evaluate the care pathway of critically ill or injured children to identify preventable failures in the care provided. Methods A year-long cohort study of critically ill and injured children was performed in Cape Town, South Africa, from first presentation to healthcare services until paediatric intensive care unit (PICU) admission or emergency department death, using expert panel review of medical records and caregiver interview. Main outcomes were expert assessment of overall quality of care; avoidability of severity of illness and PICU admission or death and the identification of modifiable factors. Results The study enrolled 282 children, 252 emergency PICU admissions, and 30 deaths. Global quality of care was graded good in 10% of cases, with half having at least one major impact modifiable factor. Key modifiable factors related to access to care and identification of the critically ill, assessment of severity, inadequate resuscitation, and delays in decision making and referral. Children were transferred with median time from first presentation to PICU admission of 12.3 hours. There was potentially avoidable severity of illness in 185 (74%) of children, and death prior to PICU admission was avoidable in 17/30 (56.7%) of children. Conclusions The study presents a novel methodology, examining quality of care across an entire system, and highlighting the complexity of the pathway and the modifiable events amenable to interventions, that could reduce mortality and morbidity, and optimize utilization of scarce critical care resources; as well as demonstrating the importance of continuity and quality of care.

Evidence for non-communicable diseases: analysis of Cochrane reviews and randomised trials by World Bank classification

Introduction Prevalence of non-communicable diseases (NCDs) is increasing globally, with the greatest projected increases in low-income and middle-income countries. We sought to quantify the proportion of Cochrane evidence relating to NCDs derived from such countries. Methods We searched the Cochrane database of systematic reviews for reviews relating to NCDs highlighted in the WHO NCD action plan (cardiovascular, cancers, diabetes and chronic respiratory diseases). We excluded reviews at the protocol stage and those that were repeated or had been withdrawn. For each review, two independent researchers extracted data relating to the country of the corresponding author and the number of trials and participants from countries, using the World Bank classification of gross national income per capita. Results 797 reviews were analysed, with a reported total number of 12 340 trials and 10 937 306 participants. Of the corresponding authors 90% were from high-income countries (41% from the UK). Of the 746 reviews in which at least one trial had met the inclusion criteria, only 55% provided a summary of the country of included trials. Analysis of the 633 reviews in which country of trials could be established revealed that almost 90% of trials and over 80% of participants were from high-income countries. 438 (5%) trials including 1 145 013 (11.7%) participants were undertaken in low-middle income countries. We found that only 13 (0.15%) trials with 982 (0.01%) participants were undertaken in low-income countries. Other than the five Cochrane NCD corresponding authors from South Africa, only one other corresponding author was from Africa (Gambia). Discussion The overwhelming body of evidence for NCDs pertains to high-income countries, with only a small number of review authors based in low-income settings. As a consequence, there is an urgent need for research infrastructure and funding for the undertaking of high-quality trials in this area.

ExPeKT-Exploring prevention and knowledge of venous thromboembolism: A two-stage, mixed-method study protocol

Introduction There is little awareness of venous thromboembolism (VTE) in the public arena. Most commonly known causes are—travellers’ thrombosis and thrombosis associated with oral contraception, both frequently referred to in the media. However, VTE is a substantial healthcare problem, resulting in mortality, morbidity and economic cost. Most hospitalised patients have one or more risk factors for VTE. Around 60% of people undergoing hip or knee replacement will suffer a deep vein thrombosis without preventative intervention. Studies demonstrate a risk reduction for VTE of up to 70% with preventative medicine for medical and surgical conditions: cancer, orthopaedic surgery, general surgery and acutely ill medical admissions. Results will be used to identify methods of increasing knowledge of VTE prevention and for the development of educational and patient information materials. Methods and analysis A two-stage, mixed-method study using surveys with primary healthcare professionals and patients followed by interviews with primary healthcare professionals, patients, acute trusts and other relevant organisations. Survey and qualitative interview data will examine the current practice of thromboprophylaxis, and the knowledge and experience of VTE prevention for the development of education initiatives for primary healthcare professionals and patients to adopt thromboprophylaxis outside the hospital setting. As this is a scientific exploratory study for the generation, rather than testing, of new hypotheses a sample-size analysis is not called for. Survey data will be analysed using SPSS version 20. Open-ended responses will be analysed using qualitative thematic methods. The recorded and transcribed semistructured interview data will be analysed using constant comparative methods. Ethics and dissemination Ethics approval has been provided by the National Research Ethics Committee (reference: 11/H0605/5) and site-specific R&D approval granted by the relevant R&D National Health Service trusts. Findings will be disseminated at healthcare and academic conferences and written for peer-reviewed publication. Trial grant number NIHR RP-PG-0608-10073

Oxfordshire Women and Their Children's Health (OxWATCH): protocol for a prospective cohort feasibility study.

Introduction Some specific pregnancy disorders are known to be associated with increased incidence of long-term maternal ill health (eg, gestational diabetes with late onset type 2 diabetes; pre-eclampsia with arterial disease). To what degree these later health conditions are a consequence of the womans constitution prior to pregnancy rather than pregnancy itself triggering changes in a womans health is unknown. Additionally, there is little prospective evidence for the impact of pre-pregnancy risk factors on the outcome of pregnancy. To understand the importance of pre-pregnancy health requires the recruitment of women into a long-term cohort study before their first successful pregnancy. The aim of this feasibility study is to test recruitment procedures and acceptability of participation to inform the planning of a future large-scale cohort study. Methods The prospective cohort feasibility study will recruit nulliparous women aged 18–40 years. Women will be asked to complete a questionnaire to assess the acceptability of our recruitment and data collection procedures. Baseline biophysical, genetic, socioeconomic, behavioural and psychological assessments will be conducted and samples of blood, urine, saliva and DNA will be collected. Recruitment feasibility and retention rates will be assessed. Women who become pregnant will be recalled for pregnancy and postpregnancy assessments. Ethics and dissemination The study protocol was approved by South Central Portsmouth REC (Ref: 12/SC/0492). The findings from the study will be disseminated through peer reviewed journals, national and international conference presentations and public events. Trial registration number http://www.clinicaltrials.gov; NCT02419898.

Current practice of venous thromboembolism prevention in acute trusts: a qualitative study.

Objective To explore the current practice of venous thromboembolism (VTE) prevention in acute trusts. Design A qualitative research design was used to explore the perceived current practice of thromboprophylaxis, and knowledge and experience of VTE prevention. Data were collected via interviews with personnel from acute trusts and other relevant organisations and charities. Constant comparison was used to generate themes grounded in the data. Setting The UK. Participants 17 participants, sampled due to their expertise and knowledge in the field of VTE, were interviewed for the study. Results No one felt directly responsible for VTE risk assessment and treatment in acute trusts. There were concerns whether any action takes place based on the risk assessment. Low levels of VTE knowledge existed throughout the system. Conclusions Our study highlights the importance of continuous training to prevent VTE risk assessment being considered a tick box exercise and for clinicians to understand the significance of the procedure to ensure that VTE preventative measures are administered. It is essential that acute trust staff acknowledge that VTE prevention is the responsibility of everyone involved in a patients care. Concerns remain around prophylaxis treatment, administration and contraindications.

Caregivers’ Experiences of Pathways to Care for Seriously Ill Children in Cape Town, South Africa: A Qualitative Investigation

Purpose Understanding caregivers’ experiences of care can identify barriers to timely and good quality care, and support the improvement of services. We aimed to explore caregivers’ experiences and perceptions of pathways to care, from first access through various levels of health service, for seriously ill and injured children in Cape Town, South Africa, in order to identify areas for improvement. Methods Semi-structured, qualitative interviews were conducted with primary caregivers of children who were admitted to paediatric intensive care or died in the health system prior to intensive care admission. Interviews explored caregivers’ experiences from when their child first became ill, through each level of health care to paediatric intensive care or death. A maximum variation sample of transcripts was purposively sampled from a larger cohort study based on demographic characteristics, child diagnosis, and outcome at 30 days; and analysed using the method of constant comparison. Results Of the 282 caregivers who were interviewed in the larger cohort study, 45 interviews were included in this qualitative analysis. Some caregivers employed ‘tactics’ to gain quicker access to care, including bypassing lower levels of care, and negotiating or demanding to see a healthcare professional ahead of other patients. It was sometimes unclear how to access emergency care within facilities; and non-medical personnel informally judged illness severity and helped or hindered quicker access. Caregivers commonly misconceived ambulances to be slow to arrive, and were concerned when ambulance transfers were seemingly not prioritised by illness severity. Communication was often good, but some caregivers experienced language difficulties and/or criticism. Conclusions Interventions to improve child health care could be based on: reorganising the reception of seriously ill children and making the emergency route within healthcare facilities clear; promoting caregivers’ use of ambulances and prioritising transfers according to illness severity; addressing language barriers, and emphasising the importance of effective communication to healthcare providers.

Supporting patients to self-monitor their oral anticoagulation therapy: Recommendations based on a qualitative study of patients' experiences

Background Clinical trials suggest that oral anticoagulation therapy (OAT) self-monitoring is safe and effective, however little is known about the patient experience of this process. There is a lack of understanding about how best to train and support patients embarking on OAT self-monitoring. Aim To collect in-depth information about patients’ experiences of OAT self-monitoring outside of clinical trial conditions and to produce a set of recommendations on how best to support such patients. Design and setting Semi-structured qualitative interviews with patients who self-monitor and live in England. Method In total, 26 of the 267 (9.7%) who participated in the Cohort study of Anticoagulation Self-Monitoring (CASM) and were still self-monitoring after 12 months’ follow-up were interviewed. Topics discussed included experiences of OAT self-monitoring, healthcare support, training, and decision making. Framework analysis was used. Results Following initial problems using the monitoring device, interviewees described a mostly positive experience. Although less effort was expended attending monitoring appointments with health professionals, effort was required to conduct self-monitoring tests and to interpret and act on the results. Desire to self-manage was variable, especially when dosing advice systems worked promptly and reliably. Interviewees overcame patchy healthcare system knowledge and support of self-monitoring by educating themselves. Family and friends provided support with learning to use the monitor and managing OAT dosage adjustments. Conclusion Better, more-consistent training and health-service support would have alleviated a number of problems encountered by these patients who were self-monitoring. This training and support will become even more important if self-monitoring becomes more accessible to the general population of people on OAT.