Breast, Prostate, Colorectal, and Lung Cancer Incidence and Risk Factors in Women Who Have Sex with Women and Men Who Have Sex with Men: A Cross-Sectional and Longitudinal Analysis Using UK Biobank

Background: There is limited evidence about cancer incidence for lesbian, gay and bisexual women and men, although the prevalence of cancer risk factors may be higher. Aim. To describe cancer incidence for four common cancers (breast, lung, colorectal and prostate). Methods. This project used UK Biobank participant data. We explored risk factor prevalence (age, deprivation, ethnicity, smoking, alcohol intake, obesity, parity, and sexual history), and calculated cancer risk, for six groups defined based on sexual history; women who have sex exclusively with men (WSEM), or women (WSEW), women who have sex with men and women (WSWM); men who have sex exclusively with women (MSEW), or men (MSEM), and men who have sex with women and men (MSWM). Results. WSEW, WSWM, MSEM, and MSMW were younger, more likely to smoke, and to live in more deprived neighbourhoods. We found no evidence of an association between sexual history and breast, colorectal, or prostate cancer in age-adjusted models. Lung cancer incidence was higher for WSWM compared with WSEM, HR (95%CI) 1.78 (1.28–2.48), p = 0.0005, and MSWM compared with MSEW, 1.43 (1.03–1.99), p = 0.031; after adjustment for smoking, this difference was no longer significant. Conclusions. Sexual minority groups have a higher risk for lung cancer, due to greater exposure to smoking

Post-sampling mortality and non-response patterns in the English Cancer Patient Experience Survey: Implications for epidemiological studies based on surveys of cancer patients.

BACKGROUND: Surveys of the experience of cancer patients are increasingly being introduced in different countries and used in cancer epidemiology research. Sampling processes, post-sampling mortality and survey non-response can influence the representativeness of cancer patient surveys. METHODS: We examined predictors of post-sampling mortality and non-response among patients initially included in the sampling frame of the English Cancer Patient Experience Survey. We also compared the respondents' diagnostic case-mix to other relevant populations of cancer patients, including incident and prevalent cases. RESULTS: Of 109,477 initially sampled cancer patients, 6273 (5.7%) died between sampling and survey mail-out. Older age and diagnosis of brain, lung and pancreatic cancer were associated with higher risk of post-sampling mortality. The overall response rate was 67% (67,713 respondents), being >70% for the most affluent patients and those diagnosed with colon or breast cancer and <50% for Asian or Black patients, those under 35 and those diagnosed with brain cancer. The diagnostic case-mix of respondents varied substantially from incident or prevalent cancer cases. CONCLUSIONS: Respondents to the English Cancer Patient Experience Survey represent a population of recently treated cancer survivors. Although patient survey data can provide unique insights for improving cancer care quality, features of survey populations need to be acknowledged when analysing and interpreting findings from studies using such data.The authors wish to thank the Department of Health as the principal investigator of the 2010 Cancer Patient Experience Survey, Quality Health as the data collector and for making available the anonymous sampling frame, and all the National Health Service Acute Trusts in England who supported the survey. GL is supported by a Cancer Research UK Clinician Scientist Fellowship (A18180). The views expressed in this publication are those of the authors and not necessarily those of any funder or any other organisation or institution.This is the final version of the article. It first appeared from Elsevier via http://dx.doi.org/10.1016/j.canep.2015.12.01

What explains worse patient experience in London? Evidence from secondary analysis of the Cancer Patient Experience Survey.

OBJECTIVE: To explore why patients with cancer treated by London hospitals report worse experiences of care compared with those treated in other English regions. DESIGN: Secondary analysis of the 2011/2012 National Cancer Patient Experience Survey (n=69 086). SETTING AND PARTICIPANTS: Patients with cancer treated by the English National Health Service (NHS) hospitals. MAIN OUTCOME MEASURES: 64 patient experience measures covering all aspects of cancer care (pre-diagnosis to discharge). METHODS: Using mixed effects logistic regression, we explored whether poorer scores in London hospitals could be explained by patient case-mix (age, gender, ethnicity and cancer type). Because patients referred to tertiary centres and/or with complex medical problems may report more critical experiences, we also explored whether the experiences reported in London may reflect higher concentration of teaching hospitals in the capital. Finally, using the data from the (general) Adult Inpatients Survey, we explored whether the extent of poorer experience reported by London patients was similar for respondents to either survey. RESULTS: For 52/64 questions, there was evidence of poorer experience in London, with the percentage of patients reporting a positive experience being lower compared with the rest of England by a median of 3.7% (IQR 2.5-5.4%). After case-mix adjustment there was still evidence for worse experience in London for 45/64 question [corrected]. In addition, adjusting for teaching hospital status made trivial difference to the case-mix-adjusted findings. There was evidence that London versus rest-of-England differences were greater for patients with cancer compared with (general) hospital inpatients for 10 of 16 questions in both the Cancer Patient Experience and the Adult Inpatients Surveys. CONCLUSIONS: Patients with cancer treated by London hospitals report worse care experiences and by and large these differences are not explained by patient case-mix or teaching hospital status. Efforts to improve care in London should aim to meet patient expectations and improve care quality.This work was supported by funding from the European Community Seventh Framework Programme under grant agreement 223175 (HEALTH-F2_2009-223175). The funding source had no role in the writing of this report or the decision to submit the paper for publication for which all authors had responsibility. All authors except PP and NP are employed by the PHG Foundation, which is the working name of the Foundation for Genomics and Population Health, a charitable company registered in England and Wales, charity No. 1118664 company No. 5823194

Anticoagulation trends in adults aged 65 years and over with atrial fibrillation: a cohort study.

Funder: Wellcome TrustObjectiveTo describe patterns of anticoagulation prescription and persistence for those aged ≥65 years with atrial fibrillation (AF).MethodsDescriptive cohort study using electronic general practice records of patients in England, who attended an influenza vaccination aged ≥65 years and were diagnosed with AF between 2008 and 2018. Patients were stratified by 10-year age group and year of diagnosis. Proportion anticoagulated, type of anticoagulation (direct oral anticoagulant (DOAC) or warfarin) initiated at diagnosis and persistence with anticoagulation over time are reported.Results42 290 patients (49% female), aged 65-74 (n=11 722), 75-84 (n=19 055) and 85+ (n=11 513) years at AF diagnosis are included. Prescription of anticoagulation at diagnosis increased over the time period from 55% to 86% in people aged 65-74 years, from 54% to 86% in people aged 75-84 years and from 27% to 75% in people aged 85 years and over. By 2018, 92% of patients with newly diagnosed AF were started on a DOAC. Survivor function for 5-year persistence in patients prescribed DOAC was 0.80 (95% CI 0.77 to 0.82) and for warfarin 0.71 (95% CI 0.70 to 0.72). Survivor function for any anticoagulation at 5 years was 0.79 (95% CI 0.78 to 0.81), 0.73 (95% CI 0.72 to 0.75) and 0.58 (95% CI 0.59 to 0.64) for people aged 65-74, 75-84 and 85+ years, respectively.ConclusionsRates of anticoagulation in AF in those aged ≥65 years have increased from 2008 to 2018, over which time period there has been a shift from initiating anticoagulation with warfarin to DOAC. Persistence with anticoagulation is higher in people on DOACs than on warfarin and in people aged <85 years

Beyond the ecological fallacy: potential problems when studying healthcare organisations.

Ecological studies, which consider patient groups rather than individuals, are common in health policy research. The ‘ecological fallacy’ is a well-recognised methodological concern, but in this perspectives paper, we focus on less often appreciated but equally important limitations of such studies. In particular, we consider reliability and power as they apply to ecological studies, and make recommendations to inform the appropriate design and interpretation of these increasingly popular studies.This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. GL is supported by a Cancer Research UK Clinician Scientist Fellowship (A18180). The views expressed in this publication are those of the authors and not necessarily those of any funder or any other organisation or institution.This is the author accepted manuscript. The final version is available from SAGE via http://dx.doi.org/10.1177/014107681561057

Using UK Biobank for sexual minority health research

Aim: Despite poorer health and healthcare outcomes experienced by lesbian, gay and bisexual adults, data for research to characterize and address these disparities remain limited. Patients & methods: We describe sexual history information from 502,543 UK Biobank participants recruited between 2006 and 2010, as sexual identity was not collected from the cohort at baseline, and compare this with sexual history and sexual identity responses to the third National Survey of Sexual Attitudes and Lifestyles (NATSAL-3), collected between 2010 and 2012. Results: After exclusions, 700 (0.3%) women and 2112 (1.2%) men in UK Biobank reported a history of exclusively same-sex sex and 5162 (2.3%) women and 4275 (2.3%) men reported a history of sex with both women and men; estimates were consistent with, although slightly lower those from NATSAL-3. Conclusion: UK Biobank is an important resource for sexual minority health research

Response rates to patient surveys

BACKGROUND: Patient surveys typically have variable response rates between organizations, leading to concerns that such differences may affect the validity of performance comparisons. OBJECTIVE: To explore the size and likely sources of associations between hospital-level survey response rates and patient experience. RESEARCH DESIGN, SUBJECTS, AND MEASURES: Cross-sectional mail survey including 60 patient experience items sent to 101,771 cancer survivors recently treated by 158 English NHS hospitals. Age, sex, race/ethnicity, socioeconomic status, clinical diagnosis, hospital type, and region were available for respondents and nonrespondents. RESULTS: The overall response rate was 67% (range, 39% to 77% between hospitals). Hospitals with higher response rates had higher scores for all items (Spearman correlation range, 0.03-0.44), particularly questions regarding hospital-level administrative processes, for example, procedure cancellations or medical note availability.From multivariable analysis, associations between individual patient experience and hospital-level response rates were statistically significant (P<0.05) for 53/59 analyzed questions, decreasing to 37/59 after adjusting for case-mix, and 25/59 after further adjusting for hospital-level characteristics.Predicting responses of nonrespondents, and re-estimating hypothetical hospital scores assuming a 100% response rate, we found that currently low performing hospitals would have attained even lower scores. Overall nationwide attainment would have decreased slightly to that currently observed. CONCLUSIONS: Higher response rate hospitals have more positive experience scores, and this is only partly explained by patient case-mix. High response rates may be a marker of efficient hospital administration, and higher quality that should not, therefore, be adjusted away in public reporting. Although nonresponse may result in slightly overestimating overall national levels of performance, it does not appear to meaningfully bias comparisons of case-mix-adjusted hospital results.GL is supported by a Cancer Research UK Clinician Scientist Fellowship (A18180).This is the final version of the article. It first appeared from Wolters Kluwer via http://dx.doi.org/10.1097/MLR.000000000000045

Informal carers' health-related quality of life and patient experience in primary care: evidence from 195,364 carers in England responding to a national survey.

BACKGROUND: We aim to describe the health-related quality of life of informal carers and their experiences of primary care. METHODS: Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication). RESULTS: Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access. CONCLUSIONS: Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.This is the final version of the article. It first appeared from BioMed Central via http://dx.doi.org/10.1186/s12875-015-0277-

A Systematic Multidisciplinary Process for User Engagement and Sensor Evaluation: Development of a Digital Toolkit for Assessment of Movement in Children with Cerebral Palsy

Objectives: To describe and critique a systematic multidisciplinary approach to user engagement, and selection and evaluation of sensor technologies for development of a sensor-based Digital Toolkit for assessment of movement in children with cerebral palsy (CP).Methods: A sequential process was employed comprising three steps: Step 1: define user requirements, by identifying domains of interest; Step 2: map domains of interest to potential sensor technologies; and Step 3: evaluate and select appropriate sensors to be incorporated into the Digital Toolkit. The process employed a combination of principles from frameworks based in either healthcare or technology design.Results: A broad range of domains were ranked as important by clinicians, patients and families, and industry users. These directly informed the device selection and evaluation process that resulted in three sensor-based technologies being agreed for inclusion in the Digital Toolkit, for use in a future research study.Conclusion: This report demonstrates a systematic approach to user engagement and device selection and evaluation during the development of a sensor-based solution to a healthcare problem. It also provides a narrative on the benefits of employing a multidisciplinary approach throughout the process. This work uses previous frameworks for evaluating sensor technologies and expands on the methods used for user engagement