Nada F. Khan

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.

Adaptation and validation of the Charlson Index for Read/OXMIS coded databases

BackgroundThe Charlson comorbidity index is widely used in ICD-9 administrative data, however, there is no translation for Read/OXMIS coded data despite increasing use of the General Practice Research Database (GPRD). Our main objective was to translate the Charlson index for use with Read/OXMIS coded data such as the GPRD and test its association with mortality. We also aimed to provide a version of the comorbidity index for other researchers using similar datasets.MethodsTwo clinicians translated the Charlson index into Read/OXMIS codes. We tested the association between comorbidity score and increased mortality in 146 441 patients from the GPRD using proportional hazards models.ResultsThis Read/OXMIS translation of the Charlson index contains 3156 codes. Our validation showed a strong positive association between Charlson score and age. Cox proportional models show a positive increasing association with mortality and Charlson score. The discrimination of the logistic regression model for mortality was good (AUC = 0.853).ConclusionWe have translated a commonly used comorbidity index into Read/OXMIS for use in UK primary care databases. The translated index showed a good discrimination in our study population. This is the first study to develop a co-morbidity index for use with the Read/OXMIS coding system and the GPRD. A copy of the co-morbidity index is provided for other researchers using similar databases.

Long-term health outcomes in a British cohort of breast, colorectal and prostate cancer survivors: a database study

Background:The community-based incidence of cancer treatment-related long-term consequences is uncertain. We sought to establish the burden of health outcomes that have been associated with treatment among British long-term cancer survivors.Methods:We identified 26 213 adults from the General Practice Research Database who have survived 5 years or more following breast, colorectal or prostate cancer. Four age-, sex- and general practice-matched non-cancer controls were selected for each survivor. We considered the incidence of treatment-associated health outcomes using Cox proportional hazards models.Results:Breast cancer survivors had an elevated incidence of heart failure (hazards ratio (HR) 1.95, 95% confidence interval (CI) 1.27–3.01), coronary artery disease (HR 1.27, 95% CI 1.11–1.44), hypothyroidism (HR 1.26, 95% CI 1.02–1.56) and osteoporosis (HR 1.26, 95% CI 1.13–1.40). Among colorectal cancer survivors, there was increased incidence of dementia (HR 1.68, 95% CI 1.20–2.35), diabetes (HR 1.39, 95% CI 1.12–1.72) and osteoporosis (HR 1.41, 95% CI 1.15–1.73). Prostate cancer survivors had the highest risk of osteoporosis (HR 2.49, 95% CI 1.93–3.22).Conclusions:The study confirms the occurrence of increased incidence of chronic illnesses in long-term cancer survivors attributable to underlying lifestyle and/or cancer treatments. Although the absolute risk of the majority of late effects in the cancer survivors cohort is low, identifying prior risk of osteoporosis by bone mineral density scanning for prostate survivors should be considered. There is an urgent need to improve primary care recording of cancer treatment.

Risk of stroke and oral anticoagulant use in atrial fibrillation: a cross-sectional survey

BACKGROUND Oral anticoagulants substantially reduce the risk of stroke in atrial fibrillation but are underutilised in current practice. AIM To measure the distribution of stroke risk in patients with atrial fibrillation (using the CHADS(2) and CHA(2)DS(2)-VASc scores) and changes in oral anticoagulant use during 2007-2010. DESIGN AND SETTING Longitudinal series of cross-sectional survey in 583 UK practices linked to the QResearch(®) database providing 99 351 anonymised electronic records from people with atrial fibrillation. METHOD The proportion of patients in each CHADS(2) and CHA(2)DS(2)-VASc risk band in 2010 was calculated; for each of the years 2007-2010, the proportions with risk scores ≥2 that were using anticoagulants or antiplatelet agents were estimated. The proportions identified at high risk were re-estimated using alternative definitions of hypertension based on coded data. Finally, the prevalence of comorbid conditions in treated and untreated high-risk (CHADS(2) ≥2) groups was derived. RESULTS The proportion at high risk of stroke in 2010 was 56.9% according to the CHADS(2) ≥2 threshold, and 84.5% according to CHA(2)DS(2)-VASc ≥2 threshold. The proportions of these groups receiving anticoagulants were 53.0% and 50.7% respectively and increased during 2007-2010. The means of identifying the population of individuals with hypertension significantly influenced the estimated proportion at high risk. Comorbid conditions associated with avoidance of anticoagulants included history of falls, use of nonsteroidal anti-inflammatory drugs, and dementia. CONCLUSION Oral anticoagulant use in atrial fibrillation has increased in UK practice since 2007, but remains suboptimal. Improved coding of hypertension is required to support systematic identification of individuals at high risk of stroke and could be assisted by practice-based software.

Defining cancer survivorship: a more transparent approach is needed

IntroductionThere is a lack of a consistent, operational definition of what it means to be a cancer survivor despite widespread use of the term. The term carries positive connotations of ‘beating’ cancer, but some people living past cancer do not identify with this portrayal.MethodsThe term ‘cancer survivor’ was first developed and used in the USA for advocacy reasons and to promote research and care of this growing population. Some organizations define a cancer survivor from the time of cancer diagnosis. Researcher and policy makers may use different definitions based on their research or funding priorities.ResultsThe use of the term ‘cancer survivor’, its acceptability and its interpretation amongst people living past a cancer diagnosis and primary treatment is relatively understudied. There may be numerous interpretations of cancer survivorship amongst people living past cancer, and some individuals may not relate to the term.Discussion and implications for cancer survivorsInstead of working towards a universal definition of cancer survivorship, we suggest that researchers and policy makers use operational descriptions when discussing the diverse population of people living past a cancer diagnosis.

A qualitative study of unmet needs and interactions with primary care among cancer survivors.

Introduction:Despite increasing numbers, there is little research investigating the long-term needs of cancer survivors. The aim of this study is to explore the experiences of individuals who have survived at least 5 years following a cancer diagnosis, and to describe perceived unmet needs and interactions with primary care.Methods:Forty long-term survivors of breast, colorectal and prostate cancer were purposively selected for an in-depth qualitative study. We aimed for a maximum variation sample according to cancer site, gender, time since diagnosis, cancer needs, anxiety and depression. Interviews were audio recorded and transcribed verbatim. Transcripts were coded thematically using a grounded theory approach.Results:Analysis of the interview data is presented in four subthemes: the role they perceived for the general practitioner (GP), unmet needs, reasons for not using primary care for needs they perceived as cancer related, and ongoing care for cancer-related issues. The majority of cancer survivors did not see a role for their GP in their long-term care related to their cancer diagnosis as most considered that they did not need active follow-up, but some expressed a need for psychological services and information on possible long-term effects. Cancer survivors cited three main reasons for not using GP services in relation to their cancer diagnosis: GPs were seen as non-experts in cancer; they were perceived as too busy; and a lack of continuity within primary care made it difficult to talk about long-term issues. There was a wide variation in schedules and notification of PSA tests among the prostate cancer survivors.Discussion:The results from this project suggest that some cancer survivors have specific emotional and physical needs that could benefit from input from their primary care team, but not all cancer survivors look to their GP for their long-term cancer-related care. Better information care planning is required from specialists in order to identify those who would benefit most.

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.

Primary care consultation behaviours of long-term, adult survivors of cancer in the UK

The population of cancer survivors is growing, and GPs have an increasing role in their care. The General Practice Research Database was used to compare consultation rates between cancer survivors and controls. Breast and colorectal cancer survivors had one more consultation per year compared with controls up to 5 years after diagnosis; rates then converged at 10 years post-diagnosis. Prostate cancer survivors consistently consulted up to three more times per year than controls. These increased consultation rates are leading to an impact on service capacity.

Cancer screening and preventative care among long-term cancer survivors in the United Kingdom.

Background:Long-term cancer survivors in the United Kingdom are mostly followed up in a primary care setting by their general practitioner; however, there is little research on the use of services. This study examines whether cancer survivors receive adequate screening and preventative care in UK primary care.Patients and methods:We identified a cohort of long-term survivors of breast, colorectal and prostate cancer with at least a 5-year survival using the General Practice Research Database, with controls matched for age, gender and practice. We compared adherence with cancer screening and the use of preventative care between cancer survivors and controls.Results:The cancer survivors’ cohort consisted of 18 612 breast, 5764 colorectal and 4868 prostate cancer survivors. Most cancer survivors receive cancer screening at the same levels as controls, except for breast cancer survivors who were less likely to receive a mammogram than controls (OR=0.78, 95% CI: 0.66–0.92). Long-term cancer survivors received comparable levels of influenza vaccinations and cholesterol tests, but breast (OR 0.81, 95% CI: 0.74–0.87) and prostate cancer survivors (OR=0.70, 95% CI: 0.57–0.87) were less likely to receive a blood pressure test. All survivors were more likely to receive bone densitometry.Conclusion:The provision and uptake of preventive care in a primary care setting in the United Kingdom is comparable between the survivors of three common cancers and those who have not had cancer. However, long-term breast cancer survivors in this cohort were less likely to receive a mammogram.

Quality of Care for Chronic Diseases in a British Cohort of Long-Term Cancer Survivors

PURPOSE Previous research has shown that long-term cancer survivors with other chronic diseases may receive poorer care for those diseases compared with the general population. We sought to establish the quality of care for chronic diseases among cancer survivors in the United Kingdom. METHODS From the UK General Practice Research Database, we identified 21,366 adult patients who had survived 5 or more years after a diagnosis of breast, colorectal, or prostate cancer with a diagnosis of hypertension, coronary artery disease, diabetes, or cerebrovascular disease. For each patient, an age-sex matched noncancer control patient was selected from the same general practice and with the same chronic disease. We compared the chronic disease care in cancer survivors and their matched controls. RESULTS The proportion of patients meeting quality standards for chronic disease care was high in both cancer survivors and control patients. Although cancer survivors were slightly less likely to receive blood pressure monitoring and cholesterol tests, this difference was no longer apparent if patients who died during the study period were excluded. For instance, 93% of breast cancer survivors received blood pressure monitoring compared with 94% of matched control patients. Similarly, control of disease was comparable among all patients, with the exception of diabetic prostate cancer survivors, who had fewer cholesterol readings under the control limit (17% reduction, 95% CI, 7%–26%) and diabetic colorectal survivors, who had fewer calendar quarters of glycated hemoglobin control (12% reduction, 95% CI, 2%–23%). CONCLUSIONS Care of comorbidities is not neglected in the United Kingdom because people have had a previous diagnosis of cancer. One explanation is that in the United Kingdom, such care is provided through a robust primary care system.