Missing Ethnicity Data Research Articles

Impact of inconsistent ethnicity recordings on estimates of inequality in child health and education data: a data linkage study of Child and Adolescent Mental Health Services in South London

ObjectivesEthnicity data are critical for identifying inequalities, but previous studies suggest that ethnicity is not consistently recorded between different administrative datasets. With researchers increasingly leveraging cross-domain data linkages, we investigated...

Disparities in outcomes between Black and White patients in North America with thoracic malignancies and COVID-19 infection (TERAVOLT)

BackgroundPatients with thoracic malignancies who develop COVID-19 infection have a higher hospitalization rate compared to the general population and to those with other cancer types, but how this outcome differs by race and ethnicity is relatively understudied. MethodsThe TERAVOLT database is an international, multi-center repository of cross-sectional and longitudinal data studying the impact of COVID-19 on individuals with thoracic malignancies. Patients from North America with thoracic malignancies and confirmed COVID-19 infection were included for this analysis of racial and ethnic disparities. Patients with missing race data or races and ethnicities with fewer than 50 patients were excluded from analysis. Multivariable analyses for endpoints of hospitalization and death were performed on these 471 patients. ResultsOf the 471 patients, 73% were White and 27% were Black. The majority (90%) were non-Hispanic ethnicity, 5% were Hispanic, and 4% were missing ethnicity data. Black patients were more likely to have an Eastern Cooperative Oncology Group (ECOG) Performance Status ≥ 2 (p-value = 0.04). On multivariable analysis, Black patients were more likely than White patients to require hospitalization (Odds Ratio (OR): 1.69, 95% CI: 1.01–2.83, p-value = 0.044). These differences remained across different waves of the pandemic. However, no statistically significant difference in mortality was found between Black and White patients (OR 1.29, 95% CI: 0.69–2.40, p-value = 0.408). ConclusionsBlack patients with thoracic malignancies who acquire COVID-19 infection are at a significantly higher risk of hospitalization compared to White patients, but there is no significant difference in mortality. The underlying drivers of racial disparity among patients with thoracic malignancies and COVID-19 infection require ongoing investigation.

High Success Rates Utilizing Local Standard of Care Cytogenetic Testing for Risk Stratified Frontline Therapy for Newly Diagnosed Multiple Myeloma: Experience from the Ukmra RADAR Study

Background. Recent studies in genetically high risk (HR) multiple myeloma (MM) such as the UKMRA OPTIMUM study have reported high response rates with intensive induction and post-ASCT consolidation and maintenance strategies, providing the rationale for stratified therapy based on genetic risk. Whilst centralised testing in clinical trials offers ready uniformity and quality control, the use of local laboratories for testing within a clinical trial paves the way for genetic testing to be available for all patients, facilitating risk stratified therapy in routine care. We designed the UKMRA RADAR study to use local laboratories for cytogenetic (CGN) testing to assign treatment according to genetic risk. Methods. RADAR is an ongoing national, multi-center, risk-adapted, response-guided multi-arm, multi-stage (MAMS) phase II/III trial for patients with newly diagnosed MM eligible for ASCT. Patients receive induction with RCyBorD (lenalidomide, cyclophosphamide, bortezomib, dexamethasone), followed by high-dose melphalan and stem cell rescue. Post ASCT, HR patients are randomised to receive isatuximab or not, alongside RBorD consolidation and R maintenance whilst standard risk (SR) patients receive MRD response guided regimens. A protocol amendment (2022) included isatuximab throughout the HR pathway, removing the post-ASCT randomisation. Risk assessment, failure rates and turnaround time are overseen by a genomics working group (GWG) including clinical and specialist cytogenetic representation. Genetic risk testing is undertaken in local genetic labs on CD138 selected bone marrow (BM) plasma cells. HR is assigned based on the presence of at least two of: t(4;14), t(14;16), t(14:20), del(17p), del(1p) and gain(1q). Clone size cut-offs are 10% for IgH translocations and 20% for copy number changes. CGN results from local laboratories are centrally reviewed to assign risk in real-time. Indeterminate cases are discussed by the GWG. Repeat testing is mandated if the initial sample fails to yield a definitive risk result for risk. Subjects with no definitive result despite 2 samples are treated as SR. Results. As of 19 th June 2023, the trial has recruited 472 patients from 72 sites across the UK. Median age is 61 years, 59.3% male, 79.9% white, 11.7% other ethnicity and 8.5% missing ethnicity data. 25 local laboratories were used for CGN testing. Of those with CGN results 354/453 patients (78.1%) were assigned standard risk, 84 (18.5%) high risk and 15 (3.3%) risk category undefined. Risk stratification is ongoing for 19 patients. Of the high risk lesions gain(1q) was most prevalent (35%), followed by t(4;14)(10.6%), del(17p)(8.7%), del(1p32)(8.7%), t(14;16)(3.8%) and t(14;20)(0.8%). In 376/453 patients (83.0%), risk was assigned from a first BM sample. 77 (17.0%) patients required a second sample; the success rate of repeat samples is 71.4%, 22 (4.9%) patients were unable to be risk-stratified despite 2 samples. Figure 1 shows the success rate of first and repeat tests. The overall median turnaround time (from D1 cycle 1 until site notified of result) was 11 days (IQR 0 to 21). Sites were sent risk status prior to cycle 1 in 99 (21.9%) patients , 285 (62.9%) prior to cycle 2 and 341 (75.3%) cycle 3. Note this is calculated where treatment data is available. Conclusion. The RADAR study demonstrates that risk-stratified treatment approaches are feasible in the context of a national phase II/III clinical trial with the use of local laboratories for risk assignment. The vast majority of patients have been successfully allocated to a risk-adapted treatment pathway following a first FISH test (83.0%). Protocol v4 requires time-critical risk-stratification for addition of isatuximab to induction treatment from cycle 2 in high-risk patients, and this has proven to be achievable in almost 2/3 of patients with over ¾ by the end of cycle 2. The RADAR study also enables hospitals across the UK to access CGN testing via a network model of laboratories with standardization of testing and clinically relevant turnaround times. This model is applicable internationally in both public and privately funded healthcare systems and supports the infrastructure for accessible genetic risk stratification for all newly diagnosed MM patients. Ongoing studies within the RADAR trial are evaluating novel and clinically deliverable risk stratification protocols to inform risk stratified approaches in newly diagnosed MM.

Diversity in German science: researchers push for missing ethnicity data.

Diversity in German science: researchers push for missing ethnicity data.

Transfer of congenital heart patients from paediatric to adult services in England

ObjectiveThis study assessed the transfer of patients from paediatric cardiac to adult congenital heart disease (ACHD) services in England and the factors impacting on this process.MethodsThis retrospective cohort study used...

Association of Individual and Familial History of Correctional Control With Health Outcomes of Patients in a Primary Care Center

Research has shown that experiences of incarceration, probation, and parole are associated with worse health outcomes for incarcerated individuals and their families. To quantify the proportion of patients in an urban primary care clinic with an individual or family history of incarceration, probation, and/or parole and to evaluate how correctional control is associated with subjective and objective health outcomes. This cross-sectional, mixed-methods study used patient surveys and retrospective medical record review to assess the experience of correctional control among 200 English-speaking adult patients presenting for care at the Rhode Island Hospital Center for Primary Care between July 9, 2019, and January 10, 2020. Patient surveys included closed and open-ended questions pertaining to personal or familial experiences of incarceration, probation, and parole, as well as health outcomes associated with these experiences. Medical record review abstracted key health indicators and health care use data. In this cross-sectional study of 200 adult patients (1 participant was removed from the full analytic sample owing to missing ethnicity data; 113 of 199 men [56.8%]; mean [SD] age, 51.2 [14.0] years) presenting for primary care, 78 of 199 (39.2%) had a history of incarceration, 32 of 199 (16.1%) were on probation or parole at the time of the study, and 92 of 199 (46.2%) reported having a family member with a history of incarceration. Of the 199 patients, 62 (31.2%) identified as non-Hispanic Black, 93 (46.7%) identified as non-Hispanic White, and 44 (22.1%) identified as belonging to another race (American Indian and Alaska Native, Asian, Native Hawaiian and Other Pacific Islander, or other nonspecified). Compared with participants without a history of correctional control, those with a personal history of incarceration were at greater odds of having an emergency department visit that did not result in hospitalization in models adjusted for age, sex, and race and ethnicity (odds ratio, 2.87; 95% CI, 1.47-5.75). This cross-sectional study suggests that primary care clinicians should screen for correctional control as a prevalent social determinant of health.

Variations by ethnicity in referral and treatment pathways for IAPT service users in South London.

The Improving Access to Psychological Therapies (IAPT) programme aims to provide equitable access to therapy for common mental disorders. In the UK, inequalities by ethnicity exist in accessing and receiving mental health treatment. However, limited research examines IAPT pathways to understand whether and at which points such inequalities may arise. This study examined variation by ethnicity in (i) source of referral to IAPT services, (ii) receipt of assessment session, (iii) receipt of at least one treatment session. Routine data were collected on service user characteristics, referral source, assessment and treatment receipt from 85 800 individuals referred to South London and Maudsley NHS Foundation Trust IAPT services between 1st January 2013 and 31st December 2016. Multinomial and logistic regression analysis was used to assess associations between ethnicity and referral source, assessment and treatment receipt. Missing ethnicity data (18.5%) were imputed using census data and reported alongside a complete case analysis. Compared to the White British group, Black African, Asian and Mixed ethnic groups were less likely to self-refer to IAPT services. Black Caribbean, Black Other and White Other groups are more likely to be referred through community services. Almost all racial and minority ethnic groups were less likely to receive an assessment compared to the White British group, and of those who were assessed, all racial and ethnic minority groups were less likely to be treated. Racial and ethnic minority service users appear to experience barriers to IAPT care at different pathway stages. Services should address potential cultural, practical and structural barriers.

Sickle Cell Disorders and Severe COVID-19 Outcomes: A Cohort Study

Sickle Cell Disorders and Severe COVID-19 Outcomes: A Cohort Study

Person-centred experiential therapy versus cognitive behavioural therapy delivered in the English Improving Access to Psychological Therapies service for the treatment of moderate or severe depression (PRaCTICED): a pragmatic, randomised, non-inferiority trial

Person-centred experiential therapy versus cognitive behavioural therapy delivered in the English Improving Access to Psychological Therapies service for the treatment of moderate or severe depression (PRaCTICED): a pragmatic, randomised, non-inferiority trial

Overrepresentation of South Asian ethnic groups among cases of influenza A(H1N1)pdm09 during the first phase of the 2009 pandemic in England.

BackgroundDuring the first wave of the influenza A(H1N1)pdm09 pandemic in England in 2009, morbidity and mortality were higher in patients of South Asian (Indian, Pakistani or Bangladeshi) ethnic minority groups.ObjectivesThis study aims to provide insights in the representation of this group among reported cases, indicating susceptibility and exposure.MethodsAll laboratory‐confirmed cases including basic demographic and limited clinical information that were reported to the FluZone surveillance system between April and October 2009 were retrieved. Missing ethnicity data were imputed using the previously developed and validated South Asian Names and Group Recognition Algorithm (SANGRA). Differences between ethnic groups were calculated using chi‐square, log‐rank and t tests and rate ratios. Geographic clustering was compared using Ripley's K functions.ResultsSANGRA identified 2447 (28%) of the total of 8748 reported cases as South Asian. South Asian cases were younger (P < .001), more often male (P = .002) and more often from deprived areas (P < .001) than cases of other ethnic groups. Time between onset of symptoms and laboratory sampling was longer in this group (P < .001), and they were less often advised antiviral treatment (P < .001), however, declined treatment less. The highest cumulative incidence was seen in the West Midlands region (32.7/10 000), London (7.0/10 000) and East of England region (5.7/10 000).ConclusionsPeople of South Asian ethnic groups were disproportionally affected by the first wave of the influenza pandemic in England in 2009. The findings presented contribute to further understanding of demographic, socioeconomic and ethnic factors of the outbreak and inform future influenza preparedness to ensure appropriate prevention and care.

Rural and remote dental care: Patient characteristics and health care provision

To describe the characteristics of patients who used the Royal Flying Doctor Service dental clinics and determine Royal Flying Doctor Service and non-Royal Flying Doctor Service dental service provision in mainland Australia. A prospective cohort study. All Royal Flying Doctor Service dental clinics located throughout rural and remote Australia. All patients who accessed an Royal Flying Doctor Service dental clinic from April 2017 to September 2018. Royal Flying Doctor Service mobile dental clinics. Patient demographics and dental procedures conducted (by age, sex and Indigenous status); and the dental service provision and coverage (Royal Flying Doctor Service and non-Royal Flying Doctor Service) within mainland rural and remote Australia. There were 8992 patient episodes comprising 3407 individual patients with 27897 services completed. There were 920 (27%) Indigenous and 1465 (43%) non-Indigenous patients (n=1022 missing ethnicity data). The mean (SD) age was 31.5 (24.8) years; the age groups 5-9 years and 10-14 years received 17.6% and 15.1% of the services, respectively. There were 1124 (33%) men and 1295 (38%) women (n=988 with missing sex data). Women were more likely (all P<.05) to receive preventive services, diagnostic services, restorative services, general services, endodontics and periodontics. Men were more likely (both P<.05) to receive oral surgery and prosthodontics. There are many rural and remote people required to travel more than 60minutes by vehicle to access dental care. Without increasing dental provision and preventive services in rural areas, it seems likely that there are and will be unnecessary oral emergencies and hospitalisations.

Population-calibrated multiple imputation for a binary/categorical covariate in categorical regression models.

Multiple imputation (MI) has become popular for analyses with missing data in medical research. The standard implementation of MI is based on the assumption of data being missing at random (MAR). However, for missing data generated by missing not at random mechanisms, MI performed assuming MAR might not be satisfactory. For an incomplete variable in a given data set, its corresponding population marginal distribution might also be available in an external data source. We show how this information can be readily utilised in the imputation model to calibrate inference to the population by incorporating an appropriately calculated offset termed the “calibrated‐δ adjustment.” We describe the derivation of this offset from the population distribution of the incomplete variable and show how, in applications, it can be used to closely (and often exactly) match the post‐imputation distribution to the population level. Through analytic and simulation studies, we show that our proposed calibrated‐δ adjustment MI method can give the same inference as standard MI when data are MAR, and can produce more accurate inference under two general missing not at random missingness mechanisms. The method is used to impute missing ethnicity data in a type 2 diabetes prevalence case study using UK primary care electronic health records, where it results in scientifically relevant changes in inference for non‐White ethnic groups compared with standard MI. Calibrated‐δ adjustment MI represents a pragmatic approach for utilising available population‐level information in a sensitivity analysis to explore potential departures from the MAR assumption.

Response bias to a randomised controlled trial of a lifestyle intervention in people at high risk of cardiovascular disease: a cross-sectional analysis

BackgroundResearch evaluating lifestyle interventions for prevention of cardiovascular disease (CVD) may not reach those most at risk. We compared the response rate to a randomised controlled trial (RCT) of a lifestyle intervention by CVD risk, ethnicity and level of deprivation.MethodsPrimary care patients with a QRisk2 score ≥ 20% were invited to participate in a RCT of an intensive lifestyle intervention versus usual care. This cross-sectional analysis compares anonymised data of responders and non-responders with multiple logistic regression, using adjusted odds ratios (AORs) for QRisk2 score, ethnicity, Index of Multiple Deprivation (IMD 2010) quintile, age and sex.ResultsFrom 60 general practices, 8902 patients were invited and 1489 responded. The mean age was 67.3 years and 21.0% were female. Of all patients invited, 69.9% were of white ethnic background, 13.9% ethnic minority backgrounds and 16.2% had no ethnicity data recorded in their medical records. Likelihood of response decreased as QRisk2 score increased (AOR 0.82 per 5 percentage points, 95% CI 0.77–0.88). Black African or Caribbean patients (AOR 0.67; 95% CI 0.45–0.98) and those with missing ethnicity data (AOR 0.55; 95% CI 0.46–0.66) were less likely to respond compared to participants of white ethnicity, but there was no difference in the response rates between south Asian and white ethnicity (AOR 1.08; 95% CI 0.84–1.38). Patients residing in the fourth (AOR 0.70; 95% CI 0.56–0.87) and fifth (AOR 0.52; 95% CI 0.40–0.68) most deprived IMD quintile were less likely to respond compared to the least deprived quintile.ConclusionsEvaluations of interventions intended for those at high risk of CVD may fail to reach those at highest risk. Hard to reach patient groups may require different recruitment strategies to maximise participation in future trials. Improvements in primary care ethnicity data recording is required to aid understanding of how successfully study samples represent the target population.Trial registrationISRCTN, ISRCTN84864870. Registered 15 May 2012, https://doi.org/10.1186/ISRCTN84864870.

Longitudinal Associations Between Reactive and Regulatory Temperament Traits and Depressive Symptoms in Middle Childhood

Although a large literature has examined the role of temperament in adult and adolescent depression, few studies have investigated interactions between reactive and regulatory temperament traits in shaping depressive symptoms in children over time. Child temperament measures (laboratory observations and maternal reports) and depressive symptoms were collected from 205 seven-year-olds (46% boys), who were followed up 1 (N = 181) and 2 (N = 171) years later. Child participants were Caucasian (87.80%), Asian (1.95%), or other ethnicity (7.80%); 2.45% of the sample was missing ethnicity data. Multilevel modeling was used to investigate within- and between-person variance in intercepts and slopes of child depressive symptoms. A steeper increase in depressive symptoms was found for children lower in laboratory-assessed effortful control (EC). Lower mother-reported surgency and higher mother-reported NE predicted increases in child depressive symptoms in the context of lower mother-reported EC. Our findings implicate EC as having main and moderating effects related to depressive symptoms in middle childhood. We emphasize the importance of developing prevention programs that enhance EC-like abilities.

Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] in England: A Randomised Controlled Trial of Two Questionnaires

Concepts allied to ethnicity are increasingly coming under question as legitimate variables for use in health research. A randomised controlled trial of two ethnicity screening questions for ascertaining risk of carrying genes associated with sickle cell and thalassaemia illustrates the challenges and limitations of assessing an association of social constructs and genetic statuses. Objectives . To evaluate two candidate ethnicity screening questions in antenatal screening programmes in low, mixed and high sickle cell prevalence areas, and to identify time taken in administration of the questions by use of the following measures: 1. Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview. 2. Numbers of carriers of clinically significant haemoglobin disorders missed by ethnicity screening questions. 3. Time taken to explain screening question for sickle cell disease (SCD)/thalassaemia and obtain ethnic/family origins. 4. Proportion of clients providing usable ethnic/family origins data. 5. Reported ethnic/family origins in pregnant women at first booking with midwife. Design . Ten-month (September 2002–June 2003) questionnaire study with random allocation to two self-administered ethnicity questions, comparison with laboratory results and results from re-interview. The settings were antenatal booking clinics in four geographical areas of England of varying expected foetal prevalence of SCD: very high (29.75 per 10,000 pregnancies); high (8.2); mixed high and low (1.29); and low (0.18). The subjects were 4,559 pregnant women at first booking with midwife. Results . Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview were 4.33% (CI 2.63–6.68%) for a category-based question and 9.45% (CI 6.86–12.61%) for a binary plus open-ended question. Proportions of carriers missed were 5.74% (CI 2.34–11.46%) and 9.71% (CI 4.75–17.13%) by category-based and binary plus open-ended questions, respectively. Average time taken to ascertain ethnic/family origins for screening was between 2.17 and 5.12 minutes in different areas, and up to 15 minutes at the 95th centile. Usable ethnicity screening data was missing in 2.94% of instances. Errors in interpretation or missing data were 3.2% for a category-based question and 4.71% for a binary plus open-ended ethnicity question. Ethnicity Question A produces fewer cases of missing or misinterpreted data (p < 0.001). Conclusions . A category-based ethnicity screening question was more effective than a binary plus open-ended question. Using the more effective question, 5.74% (CI 2.34–11.46%) of significant haemoglobinopathies will be missed in a selective screening programme, and 4.33% (CI 2.63–6.68%) of replies to an ethnicity screening question will be unreliable when compared to information given upon re-interview. In specific carefully circumscribed situations, namely, in antenatal screening for sickle cell and thalassaemia, it is possible to measure the degree of association between social constructs of ethnicity and health status in a manner that may help in effecting policy decisions.