Catherine L. Saunders

Accuracy of routinely recorded ethnic group information compared with self-reported ethnicity: evidence from the English Cancer Patient Experience survey

Objective To describe the accuracy of ethnicity coding in contemporary National Health Service (NHS) hospital records compared with the ‘gold standard’ of self-reported ethnicity. Design Secondary analysis of data from a cross-sectional survey (2011). Setting All NHS hospitals in England providing cancer treatment. Participants 58 721 patients with cancer for whom ethnicity information (Office for National Statistics 2001 16-group classification) was available from self-reports (considered to represent the ‘gold standard’) and their hospital record. Methods We calculated the sensitivity and positive predictive value (PPV) of hospital record ethnicity. Further, we used a logistic regression model to explore independent predictors of discordance between recorded and self-reported ethnicity. Results Overall, 4.9% (4.7–5.1%) of people had their self-reported ethnic group incorrectly recorded in their hospital records. Recorded White British ethnicity had high sensitivity (97.8% (97.7–98.0%)) and PPV (98.1% (98.0–98.2%)) for self-reported White British ethnicity. Recorded ethnicity information for the 15 other ethnic groups was substantially less accurate with 41.2% (39.7–42.7%) incorrect. Recorded ‘Mixed’ ethnicity had low sensitivity (12–31%) and PPVs (12–42%). Recorded ‘Indian’, ‘Chinese’, ‘Black-Caribbean’ and ‘Black African’ ethnic groups had intermediate levels of sensitivity (65–80%) and PPV (80–89%, respectively). In multivariable analysis, belonging to an ethnic minority group was the only independent predictor of discordant ethnicity information. There was strong evidence that the degree of discordance of ethnicity information varied substantially between different hospitals (p<0.0001). Discussion Current levels of accuracy of ethnicity information in NHS hospital records support valid profiling of White/non-White ethnic differences. However, profiling of ethnic differences in process or outcome measures for specific minority groups may contain a substantial and variable degree of misclassification error. These considerations should be taken into account when interpreting ethnic variation audits based on routine data and inform initiatives aimed at improving the accuracy of ethnicity information in hospital records.

Variation in promptness of presentation among 10,297 patients subsequently diagnosed with one of 18 cancers: evidence from a National Audit of Cancer Diagnosis in Primary Care.

Cancer awareness public campaigns aim to shorten the interval between symptom onset and presentation to a doctor (the ‘patient interval’). Appreciating variation in promptness of presentation can help to better target awareness campaigns. We explored variation in patient intervals recorded in consultations with general practitioners among 10,297 English patients subsequently diagnosed with one of 18 cancers (bladder, brain, breast, colorectal, endometrial, leukaemia, lung, lymphoma, melanoma, multiple myeloma, oesophageal, oro‐pharyngeal, ovarian, pancreatic, prostate, renal, stomach, and unknown primary) using data from of the National Audit of Cancer Diagnosis in Primary Care (2009–2010). Proportions of patients with ‘prompt’/‘non‐prompt’ presentation (0–14 or 15+ days from symptom onset, respectively) were described and respective odds ratios were calculated by multivariable logistic regression. The overall median recorded patient interval was 10 days (IQR 0–38). Of all patients, 56% presented promptly. Prompt presentation was more frequent among older or housebound patients (p < 0.001). Prompt presentation was most frequent for bladder and renal cancer (74% and 70%, respectively); and least frequent for oro‐pharyngeal and oesophageal cancer (34% and 39%, respectively, p <.001). Using lung cancer as reference, the adjusted odds ratios of non‐prompt presentation were 2.26 (95% confidence interval 1.57–3.25) and 0.42 (0.34–0.52) for oro‐pharyngeal and bladder cancer, respectively. Sensitivity analyses produced similar findings. Routinely recorded patient interval data reveal considerable variation in the promptness of presentation. These findings can help to prioritise public awareness initiatives and research focusing on symptoms of cancers associated with greater risk of non‐prompt presentation, such as oro‐pharyngeal and oesophageal cancer.

The relative length of the patient and the primary care interval in patients with 28 common and rarer cancers

Background:Appreciating variation in the length of pre- or post-presentation diagnostic intervals can help prioritise early diagnosis interventions with either a community or a primary care focus.Methods:We analysed data from the first English National Audit of Cancer Diagnosis in Primary Care on 10 953 patients with any of 28 cancers. We calculated summary statistics for the length of the patient and the primary care interval and their ratio, by cancer site.Results:Interval lengths varied greatly by cancer. Laryngeal and oropharyngeal cancers had the longest median patient intervals, whereas renal and bladder cancer had the shortest (34.5 and 30 compared with 3 and 2 days, respectively). Multiple myeloma and gallbladder cancer had the longest median primary care intervals, and melanoma and breast cancer had the shortest (20.5 and 20 compared with 0 and 0 days, respectively). Mean patient intervals were longer than primary care intervals for most (18 of 28) cancers, and notably so (two- to five-fold greater) for 10 cancers (breast, melanoma, testicular, vulval, cervical, endometrial, oropharyngeal, laryngeal, ovarian and thyroid).Conclusions:The findings support the continuing development and evaluation of public health interventions aimed at shortening patient intervals, particularly for cancers with long patient interval and/or high patient interval over primary care interval ratio.

Pre-referral general practitioner consultations and subsequent experience of cancer care: evidence from the English Cancer Patient Experience Survey.

Prolonged diagnostic intervals may negatively affect the patient experience of subsequent cancer care, but evidence about this assertion is sparse. We analysed data from 73 462 respondents to two English Cancer Patient Experience Surveys to examine whether patients with three or more (3+) pre‐referral consultations were more likely to report negative experiences of subsequent care compared with patients with one or two consultations in respect of 12 a priori selected survey questions. For each of 12 experience items, logistic regression models were used, adjusting for prior consultation category, cancer site, socio‐demographic case‐mix and response tendency (to capture potential variation in critical response tendencies between individuals). There was strong evidence (P < 0.01 for all) that patients with 3+ pre‐referral consultations reported worse care experience for 10/12 questions, with adjusted odds ratios compared with patients with 1–2 consultations ranging from 1.10 (95% confidence intervals 1.03–1.17) to 1.68 (1.60–1.77), or between +1.8% and +10.6% greater percentage reporting a negative experience. Associations were stronger for processes involving primary as opposed to hospital care; and for evaluation than report items. Considering 1, 2, 3–4 and ‘5+’ pre‐referral consultations separately a ‘dose–response’ relationship was apparent. We conclude that there is a negative association between multiple pre‐diagnostic consultations with a general practitioner and the experience of subsequent cancer care.

Impact of investigations in general practice on timeliness of referral for patients subsequently diagnosed with cancer: analysis of national primary care audit data

Background:For patients with symptoms of possible cancer who do not fulfil the criteria for urgent referral, initial investigation in primary care has been advocated in the United Kingdom and supported by additional resources. The consequence of this strategy for the timeliness of diagnosis is unknown.Methods:We analysed data from the English National Audit of Cancer Diagnosis in Primary Care on patients with lung (1494), colorectal (2111), stomach (246), oesophagus (513), pancreas (327), and ovarian (345) cancer relating to the ordering of investigations by the General Practitioner and their nature. Presenting symptoms were categorised according to National Institute for Health and Care Excellence (NICE) guidance on referral for suspected cancer. We used linear regression to estimate the mean difference in primary-care interval by cancer, after adjustment for age, gender, and the symptomatic presentation category.Results:Primary-care investigations were undertaken in 3198/5036 (64%) of cases. The median primary-care interval was 16 days (IQR 5–45) for patients undergoing investigation and 0 days (IQR 0–10) for those not investigated. Among patients whose symptoms mandated urgent referral to secondary care according to NICE guidelines, between 37% (oesophagus) and 75% (pancreas) were first investigated in primary care. In multivariable linear regression analyses stratified by cancer site, adjustment for age, sex, and NICE referral category explained little of the observed prolongation associated with investigation.Interpretation:For six specified cancers, investigation in primary care was associated with later referral for specialist assessment. This effect was independent of the nature of symptoms. Some patients for whom urgent referral is mandated by NICE guidance are nevertheless investigated before referral. Reducing the intervals between test order, test performance, and reporting can help reduce the prolongation of primary-care intervals associated with investigation use. Alternative models of assessment should be considered.

Do Differential Response Rates to Patient Surveys Between Organizations Lead to Unfair Performance Comparisons?: Evidence From the English Cancer Patient Experience Survey

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.

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 44/64 questions. 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.

Why do patients with multimorbidity in England report worse experiences in primary care? Evidence from the General Practice Patient Survey

Objectives To describe and explain the primary care experiences of people with multiple long-term conditions in England. Design and methods Using questionnaire data from 906 578 responders to the English 2012 General Practice Patient Survey, we describe the primary care experiences of patients with long-term conditions, including 583 143 patients who reported one or more long-term conditions. We employed mixed effect logistic regressions to analyse data on six items covering three care domains (access, continuity and communication) and a single item on overall primary care experience. We controlled for sociodemographic characteristics, and for general practice using a random effect, and further, controlled for, and explored the importance of, health-related quality of life measured using the EuroQoL (EQ-5D) scale. Results Most patients with long-term conditions report a positive experience of care at their general practice (after adjusting for sociodemographic characteristics and general practice, range 74.0–93.1% reporting positive experience of care across seven questions) with only modest variation by type of condition. For all three domains of patient experience, an increasing number of comorbid conditions is associated with a reducing percentage of patients reporting a positive experience of care. For example, compared with respondents with no long-term condition, the OR for reporting a positive experience is 0.83 (95% CI 0.80 to 0.87) for respondents with four or more long-term conditions. However, this relationship is no longer observed after adjusting for health-related quality of life (OR (95% CI) single condition=1.23 (1.21 to 1.26); four or more conditions=1.31 (1.25 to 1.37)), with pain making the greatest difference among five quality of life variables included in the analysis. Conclusions Patients with multiple long-term conditions more frequently report worse experiences in primary care. However, patient-centred measures of health-related quality of life, especially pain, are more important than the number of conditions in explaining why patients with multiple long-term conditions report worse experiences of care.

Public preferences for electronic health data storage, access and sharing - evidence from a pan-European survey

Abstract Objective To assess the public’s preferences regarding potential privacy threats from devices or services storing health-related personal data. Materials and Methods A pan-European survey based on a stated-preference experiment for assessing preferences for electronic health data storage, access, and sharing. Results We obtained 20 882 survey responses (94 606 preferences) from 27 EU member countries. Respondents recognized the benefits of storing electronic health information, with 75.5%, 63.9%, and 58.9% agreeing that storage was important for improving treatment quality, preventing epidemics, and reducing delays, respectively. Concerns about different levels of access by third parties were expressed by 48.9% to 60.6% of respondents. On average, compared to devices or systems that only store basic health status information, respondents preferred devices that also store identification data (coefficient/relative preference 95% CI = 0.04 [0.00-0.08], P = 0.034) and information on lifelong health conditions (coefficient = 0.13 [0.08 to 0.18], P < 0.001), but there was no evidence of this for devices with information on sensitive health conditions such as mental and sexual health and addictions (coefficient = −0.03 [−0.09 to 0.02], P = 0.24). Respondents were averse to their immediate family (coefficient = −0.05 [−0.05 to −0.01], P = 0.011) and home care nurses (coefficient = −0.06 [−0.11 to −0.02], P = 0.004) viewing this data, and strongly averse to health insurance companies (coefficient = −0.43 [−0.52 to 0.34], P < 0.001), private sector pharmaceutical companies (coefficient = −0.82 [−0.99 to −0.64], P < 0.001), and academic researchers (coefficient = −0.53 [−0.66 to −0.40], P < 0.001) viewing the data. Conclusions Storing more detailed electronic health data was generally preferred, but respondents were averse to wider access to and sharing of this information. When developing frameworks for the use of electronic health data, policy makers should consider approaches that both highlight the benefits to the individual and minimize the perception of privacy risks.

How Do People With Diabetes Describe Their Experiences in Primary Care? Evidence From 85,760 Patients With Self-reported Diabetes From the English General Practice Patient Survey

OBJECTIVE Developing primary care is an important current health policy goal in the U.S. and England. Information on patients’ experience can help to improve the care of people with diabetes. We describe the experiences of people with diabetes in primary care and examine how these experiences vary with increasing comorbidity. RESEARCH DESIGN AND METHODS Using data from 906,578 responders to the 2012 General Practice Patient Survey (England), including 85,760 with self-reported diabetes, we used logistic regressions controlling for age, sex, ethnicity, and socioeconomic status to analyze patient experience using seven items covering three domains of primary care: access, continuity, and communication. RESULTS People with diabetes were significantly more likely to report better experience on six out of seven primary care items than people without diabetes after adjusting for age, sex, ethnicity, and socioeconomic status (adjusted differences 0.88–3.20%; odds ratios [ORs] 1.07–1.18; P < 0.001). Those with diabetes and additional comorbid long-term conditions were more likely to report worse experiences, particularly for access to primary care appointments (patients with diabetes alone compared with patients without diabetes: OR 1.22 [95% CI 1.17–1.28] and patients with diabetes plus three or more conditions compared with patients without diabetes: OR 0.87 [95% CI 0.83–0.91]). CONCLUSIONS People with diabetes in England report primary care experiences that are at least as good as those without diabetes for most domains of care. However, improvements in primary care are needed for diabetes patients with comorbid long-term conditions, including better access to appointments and improved communication.