797Understanding bias in recruitment through population-based cancer registries

2021 ◽  
Vol 50 (Supplement_1) ◽  
Author(s):  
Rebecca Bergin ◽  
Vicki White ◽  
Dallas English ◽  
Roger Milne

Abstract Focus of Presentation Participant recruitment through registries can provide population-based samples, but there are methodological challenges. We examine challenges and solutions in two studies recruiting participants through the Victorian Cancer Registry. Cross-sectional surveys of patients with colorectal, lung or ovarian cancer conducted in 2013-14 (study 1) and repeated in an ongoing study (study 2). The registry managed fast-track recruitment of eligible patients ( > =40yrs, confirmed diagnosis, approached within 6-months of diagnosis) Findings In study 1, registry rules for confirmed diagnosis required surgical histopathology. For cancers primarily treated non-surgically (e.g. lung), selection bias was common. In study 2, confirmation rules were extended to include biopsies with subsequent hospital notification. The registry does not receive imaging notifications and pathology labs/hospital reports can be delayed (>60days). Study eligibility criteria meant cases with advanced disease, common in lung cancer, or without a confirmed diagnosis within the study timeframe were excluded. However, colorectal and ovarian cases in study 1 were largely representative of the eligible population. In study 2, a different fast-track recruitment approach meant a longer time from diagnosis to response compared to study 1 (median 7 vs 5 months). Recruitment procedures are being improved through engagement between researchers and registry. Conclusions/Implications Local registry-based rules for recruitment and available data, study eligibility criteria and cancer type (particularly cancers without histopathological confirmation), may introduce bias. Researchers need to work closely with registry colleagues to understand and optimise recruitment. Key messages Registry-based recruitment can be biased. Early and ongoing communication between researchers and registry is strongly recommended.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 79-79
Author(s):  
Jenny Jing Xiang ◽  
Alicia Roy ◽  
Christine Summers ◽  
Monica Delvy ◽  
Jessica Lee O'Donovan ◽  
...  

79 Background: Patient-trial matching is a critical step in clinical research recruitment that requires extensive review of clinical data and trial requirements. Prescreening, defined as identifying potentially eligible patients using select eligibility criteria, may streamline the process and increase study enrollment. We describe the real-world experience of implementing a standardized, universal clinical research prescreening protocol within a VA cancer center and its impact on research enrollment. Methods: An IRB approved prescreening protocol was implemented at the VACT Cancer Center in March 2017. All patients with a suspected or confirmed diagnosis of cancer are identified through tumor boards, oncology consults, and clinic lists. Research coordinators perform chart review and manually enter patient demographics, cancer type and stage, and treatment history into a REDCap (Research Electronic Data Capture) database. All clinical trials and their eligibility criteria are also entered into REDCap and updated regularly. REDCap generates real time lists of potential research studies for each patient based on his/her recorded data. The primary oncologist is alerted to a patient’s potential eligibility prior to upcoming clinic visits and thus can plan to discuss clinical research enrollment as appropriate. Results: From March 2017 to December 2020, a total of 2548 unique patients were prescreened into REDCAP. The mean age was 71.5 years, 97.5% were male, and 15.5% were African American. 32.57 % patients had genitourinary cancer, 17.15% had lung cancer, and 46.15% were undergoing malignancy workup. 1412 patients were potentially eligible after prescreening and 556 patients were ultimately enrolled in studies. The number of patients enrolled on therapeutic clinical trials increased after the implementation of the prescreening protocol (35 in 2017, 64 in 2018, 78 in 2019, and 55 in 2020 despite the COVID19 pandemic). Biorepository study enrollment increased from 8 in 2019 to 15 in 2020. The prescreening protocol also enabled 200 patients to be enrolled onto a lung nodule liquid biopsy study from 2017 to 2019. Our prescreening process captured 98.57% of lung cancer patients entered into the cancer registry during the same time period. Conclusions: Universal prescreening streamlined research recruitment operations and was associated with yearly increases in clinical research enrollment at a VA cancer center. Our protocol identified most new lung cancer patients, suggesting that, at least for this malignancy, potential study patients were not missed. The protocol was integral in our program becoming the top accruing VA site for NCI’s National Clinical Trial Network (NCTN) studies since 2019.


2020 ◽  
Vol 2020 ◽  
pp. 1-7
Author(s):  
Liping Chen ◽  
Yiyan Zhang ◽  
Juan Jin ◽  
Nannan Li ◽  
Dan Liu ◽  
...  

Objective. To explore the proportion and characteristic of Chinese adults meeting The Systolic Blood Pressure Intervention Trial (SPRINT) eligibility criteria and assess its generalizability. Method. Our study was based on a cross-sectional, population-based survey with a sample of 26,093 participants aged over 20 years. The SPRINT eligibility criteria were age ≥ 50 years, elevated SBP of 130 to 180 mmHg depending on the number of antihypertensive medication classes being taken, and increased cardiovascular disease (CVD) but without diabetes, history of stroke and estimated glomerular filtration rate < 20   ml / min / 1.73   m 2 , or receiving dialysis. Results. Overall, we estimated that 4,036 (15.5%) participants would meet the SPRINT eligibility criteria. They were generally older, likely to be female, lower educational level, tended to be more overweight, and had higher Framingham risk score compared with overall population or subjects aged ≥ 50 years. Of participants eligible for SPRINT, most (56.2%) of them were not treated for hypertension, and 542 (13.4%) were not previously considered to have hypertension or need for antihypertension therapy. Among the 11,637 adults with hypertension, 3,494 (30.0%) would potentially benefit from treatment intensification. The most common antihypertensive medication class being taken was diuretic agents. Conclusion. A substantial percentage of Chinese subjects meet the SPRINT eligibility criteria. Further studies are needed to assess the cost-effectiveness from treatment intensification in Chinese setting.


2020 ◽  
Vol 4 (4) ◽  
Author(s):  
Kathleen M Fairfield ◽  
Adam W Black ◽  
Erika C Ziller ◽  
Kimberly Murray ◽  
F Lee Lucas ◽  
...  

Abstract Background We sought to describe lung cancer prevalence and mortality in relation to socioeconomic deprivation and rurality. Methods We conducted a population-based cross-sectional analysis of prevalent lung cancers from a statewide all-payer claims dataset from 2012 to 2016, lung cancer deaths in Maine from the state death registry from 2012 to 2016, rurality, and area deprivation index (ADI), a geographic area-based measure of socioeconomic deprivation. Analyses examined rate ratios for lung cancer prevalence and mortality according to rurality (small and isolated rural, large rural, or urban) and ADI (quintiles, with highest reflecting the most deprivation) and after adjusting for age, sex, and area-level smoking rates as determined by the Behavioral Risk Factor Surveillance System. Results Among 1 223 006 adults aged 20 years and older during the 5-year observation period, 8297 received lung cancer care, and 4616 died. Lung cancer prevalence and mortality were positively associated with increasing rurality, but these associations did not persist after adjusting for age, sex, and smoking rates. Lung cancer prevalence and mortality were positively associated with increasing ADI in models adjusted for age, sex, and smoking rates (prevalence rate ratio for ADI quintile 5 compared with quintile 1 = 1.41, 95% confidence interval [CI] =1.30 to 1.54) and mortality rate ratio = 1.59, 95% CI = 1.41 to 1.79). Conclusion Socioeconomic deprivation, but not rurality, was associated with higher lung cancer prevalence and mortality. Interventions should target populations with socioeconomic deprivation, rather than rurality per se, and aim to reduce lung cancer risk via tobacco treatment and control interventions and to improve patient access to lung cancer prevention, screening, and treatment services.


BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e025895 ◽  
Author(s):  
Usha Menon ◽  
Peter Vedsted ◽  
Alina Zalounina Falborg ◽  
Henry Jensen ◽  
Samantha Harrison ◽  
...  

ObjectiveDifferences in time intervals to diagnosis and treatment between jurisdictions may contribute to previously reported differences in stage at diagnosis and survival. The International Cancer Benchmarking Partnership Module 4 reports the first international comparison of routes to diagnosis and time intervals from symptom onset until treatment start for patients with lung cancer.DesignNewly diagnosed patients with lung cancer, their primary care physicians (PCPs) and cancer treatment specialists (CTSs) were surveyed in Victoria (Australia), Manitoba and Ontario (Canada), Northern Ireland, England, Scotland and Wales (UK), Denmark, Norway and Sweden. Using Wales as the reference jurisdiction, the 50th, 75th and 90th percentiles for intervals were compared using quantile regression adjusted for age, gender and comorbidity.ParticipantsConsecutive newly diagnosed patients with lung cancer, aged ≥40 years, diagnosed between October 2012 and March 2015 were identified through cancer registries. Of 10 203 eligible symptomatic patients contacted, 2631 (27.5%) responded and 2143 (21.0%) were included in the analysis. Data were also available from 1211 (56.6%) of their PCPs and 643 (37.0%) of their CTS.Primary and secondary outcome measuresInterval lengths (days; primary), routes to diagnosis and symptoms (secondary).ResultsWith the exception of Denmark (−49 days), in all other jurisdictions, the median adjusted total interval from symptom onset to treatment, for respondents diagnosed in 2012–2015, was similar to that of Wales (116 days). Denmark had shorter median adjusted primary care interval (−11 days) than Wales (20 days); Sweden had shorter (−20) and Manitoba longer (+40) median adjusted diagnostic intervals compared with Wales (45 days). Denmark (−13), Manitoba (−11), England (−9) and Northern Ireland (−4) had shorter median adjusted treatment intervals than Wales (43 days). The differences were greater for the 10% of patients who waited the longest. Based on overall trends, jurisdictions could be grouped into those with trends of reduced, longer and similar intervals to Wales. The proportion of patients diagnosed following presentation to the PCP ranged from 35% to 75%.ConclusionThere are differences between jurisdictions in interval to treatment, which are magnified in patients with lung cancer who wait the longest. The data could help jurisdictions develop more focused lung cancer policy and targeted clinical initiatives. Future analysis will explore if these differences in intervals impact on stage or survival.


PLoS ONE ◽  
2019 ◽  
Vol 14 (2) ◽  
pp. e0212454 ◽  
Author(s):  
Frances B. Maguire ◽  
Cyllene R. Morris ◽  
Arti Parikh-Patel ◽  
Rosemary D. Cress ◽  
Theresa H. M. Keegan ◽  
...  

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18501-18501
Author(s):  
T. Gansler ◽  
K. Sharpe ◽  
C. Demler ◽  
H. Eyre

18501 Background: The low prevalence of clinical trial participation limits progress in clinical research and practice. ACS assists individuals in finding trials appropriate to their medical and personal situation. Methods: The ACS call center and website provide access to a comprehensive cancer clinical trial database and matching software platform licensed from EmergingMed. This report outlines characteristics and outcomes of constituents who met initial eligibility criteria and requested further information for at least one trial after entering data on their diagnosis and prior treatment. Results: Among 4525 CTMS constituents during 2004–5, 58% were patients, 40% were their relatives and 2% were friends. 62% entered data via the call center, the rest used www.cancer.org (although for quality assurance reasons, all must speak with a call center specialist before receiving trial site contact information). They requested protocols for a median of 6 trials (range 1 to 75); most often requesting information on trials for lung cancer (16.4%), breast cancer (11.4%), colorectal cancer (7.3%), prostate cancer (7.0%), and melanoma (5.2%). Likelihood of trial enrollment varied by cancer type (χ2, p < 0.0001) and was highest with kidney cancer (10.7%), melanoma (7.8%), multiple myeloma (4.4%), head & neck cancer (4.4%), and leukemia (3.8%). We studied several common cancer types in greater detail. For example, in analysis of data from 2004, non-small cell lung cancer patients requesting trial information had more advanced disease than typical patients in the National Cancer Database (χ2, p < 0.001). Enrollment rates for patients with stage I-IIIA and IIIB-IV were 0% and 3.7% (NS), respectively; rates for those with ECOG performance 0–1 and >1 were 4.8% and 0.0% (χ2, p < 0.05). Conclusions: The ACS CTMS can substantially augment participation in clinical trials among patients not recruited into trials by their oncologists. No significant financial relationships to disclose.


2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 6111-6111 ◽  
Author(s):  
Phyllis Noemi Butow ◽  
Lynley Aldridge ◽  
Melanie Bell ◽  
Ming Sze ◽  
Maurice Eisenbruch ◽  
...  

6111 Background: Immigration is increasing world-wide. Cancer survivorship is now recognised as a period of difficult adjustment for all patients, and possibly more so for immigrants. We explored disparities in quality of life outcomes for immigrant (IM) versus Anglo-Australian (AA) cancer survivors. Methods: In a cross-sectional design, cancer survivors were recruited through the New South Wales, Queensland and Victorian Cancer Registries in Australia. IM participants, their parents and grandparents were born in a country where Chinese, Greek, or Arabic is spoken and spoke one of those languages. AAs were born in Australia and spoke English. All were diagnosed with cancer 1-3 years previously. Questionnaires (completed in preferred language) included the Hospital Anxiety and Depression Scale (anxiety/ depression), FACT-G (quality of life) and Supportive Care Needs Survey (unmet needs). Outcomes were compared between AA and IM groups in adjusted regression models that included age, gender, socio-economic status, education, marital status, religion, time since diagnosis and cancer type (prostate, colorectal, breast and other). Results: There were 599 participants (response rate 41%). Consent was unrelated to demographic and disease variables. AA and IM groups were similar except that immigrants had higher proportions in the low and highly educated groups (p < 0.0001), and higher socioeconomic status (p = 0.0003). In adjusted analyses (see table), IMs had clinically significant higher depression (possible range 0-21), greater unmet information and physical needs, and lower quality of life than AAs. The possible range for the latter three is 0-100. Conclusions: Immigrants experience poorer outcomes in cancer survivorship, even after adjusting for socio-economic, demographic and disease differences. Interventions are required to improve their adjustment after cancer. Results highlight areas of unmet need that might be better addressed by the health system (particularly with regard to provision of information and support. [Table: see text]


BMC Cancer ◽  
2018 ◽  
Vol 18 (1) ◽  
Author(s):  
A. Seigneurin ◽  
P. Delafosse ◽  
B. Trétarre ◽  
A. S. Woronoff ◽  
M. Velten ◽  
...  

2021 ◽  
Author(s):  
Michel Carlos Mocellin ◽  
Cintia Chaves Curioni ◽  
Alessandra da Silva Pereira ◽  
Simone Augusta Ribas ◽  
Michelle Teixeira Teixeira ◽  
...  

Abstract Background: Complex B vitamin deficiency are involved with several outcomes in fertility and pregnancy. In Brazil, the national prevalence rates of these micronutrients deficiencies in women at reproductive age was not known. Therefore, this study aims to systematically identify, select, evaluate, analyze and report the prevalence rates of complex B vitamins deficiencies in women at reproductive age in Brazil, and identify variables that may modify the outcome rates.Methods: A systematic review will be conducted guided by the following question: “What is the prevalence of vitamin B complex deficiencies in women at reproductive age in Brazil?”. The studies will be identified and selected from a literature search using electronic databases, consultation to researchers/specialists, as well as reference lists of eligible studies and reviews on the topic. Major eligibility criteria include observational cross-sectional and cohort studies performed in women with 10-49 years old from Brazil; pregnant and lactating mothers; and which that investigated the deficiency of complex B vitamins by laboratorial test. Two reviewers independently will perform the screening and selection of studies, to subsequently perform data extraction and risk assessment of bias. For data report, a narrative approach will be used to summarize the characteristics of the included studies and the individual prevalence found for each micronutrient tested, and if the studies are sufficiently homogeneous, a quantitative synthesis (meta-analysis) will be performed.Discussion: Identify the national and regional prevalence rates of complex B vitamins deficiencies allow the policy makers discuss, plan and implement public policy to prevent and/or reduces the rates, if they are larger, or at least highlight discussions about a program of screening the vitamins deficiencies in this specific population for to know the epidemiologic scenario among the years, serving as an indirect indicator of the socioeconomic and dietary patterns of this population. Also, specifically for folates, this study allows to compare the prevalence rates of deficiency of this vitamin before and after the mandatory fortification of wheat and corn flours implemented since 2004. Nevertheless, the evidence gathered may highlight the need for population-based studies to investigate the deficiency of these vitamins.Systematic review registration: PROSPERO registration number: CRD42020188474


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