scholarly journals The Importance of Cancer Registry Linkage for Studying Rare Cancers in Prospective Cohorts

2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
Emily Maplethorpe ◽  
Emily V. Walker ◽  
Trenton Smith ◽  
Faith G. Davis ◽  
Yan Yuan

Large prospective cohort studies may offer an opportunity to study the etiology and natural history of rare cancers. Cancer diagnoses in observational cohort studies are often self-reported. Little information exists on the validity of self-reported cancer diagnosis, especially rare cancers, in Canada. This study evaluated the validity of self-reported cancer diagnosis in Alberta’s Tomorrow Project (ATP), a provincial cohort in Canada. ATP data were linked to the Alberta Cancer Registry (ACR). The first instance of self-reported cancer in a follow-up survey was compared to the first cancer diagnosis in the ACR after enrollment. The sensitivity and positive predictive value (PPV) were estimated for the reporting of cancer status, reporting of common or rare cancer, and reporting of site-specific cancer. Logistic regression analysis explored factors associated with false positive, false negative, and incorrect cancer site reporting. In the 30,843 ATP participants who consented to registry linkage, there were 810 primary cancer diagnoses in the ACR and 959 self-reports of first cancer post-enrollment, for a cancer status sensitivity of 92.1% (95% CI: 90.0-93.9) and PPV of 77.8% (95% CI: 75.0-80.4). Compared to common cancers, rare cancers had a lower sensitivity (62.8% vs. 89.6%) and PPV (35.8% vs. 84.5%). Participants with a rare cancer were more likely to report an incorrect site than those with a common cancer. Rare cancers were less likely to be captured by active follow-up than common cancers. While rare cancer research may be feasible in large cohort studies, registry linkage is necessary to capture rare cancer diagnoses completely and accurately.

Author(s):  
Benjamin Daniels ◽  
Hanna E Tervonen ◽  
Sallie-Anne Pearson

IntroductionDispensing claims are used commonly as proxy measures in pharmacoepidemiological studies, however, their validity is often untested. Objectives and ApproachWe quantified the level of ascertainment and potential biases arising when using dispensing claims to identify incident cancer cases in cohort studies. We used Department of Veterans’ Affairs client data linked with the New South Wales (NSW) Cancer Registry and Repatriation and Pharmaceutical Benefits Scheme data. We included clients aged ≥65 residing in NSW between July 2004 and December 2012. We matched clients with a cancer diagnosis to clients without a diagnosis based on demographic characteristics and available observation time. We used dispensing claims for anticancer medicines dispensed between July 2004 and December 2013 as a proxy for cancer diagnosis and calculated sensitivity, specificity, positive predictive values and negative predictive values compared with cancer registry data (gold standard), overall and by cancer site. We illustrated the potential for misclassification by the proxy in a cohort of people initiating opioid therapy. ResultsWe identified 15,679 incident cancer diagnoses in 14,112 clients from the cancer registry and 62,663 clients without a diagnosis. The proxy’s sensitivity was 30% for all cancers and ranged from 10-67% for specific cancers. Specificity was >90% for all cancers. The proxy correctly identified 26% of people with a cancer diagnosis who initiated opioid therapy, failed to identify 74% those with a cancer diagnosis, and was most robust for clients with breast cancer (61% were correctly identified). Conclusion / ImplicationsUse of anticancer medicine dispensings for identifying people with incident cancer diagnosis is a poor proxy. Excluding people with evidence of anticancer medicine dispensing from cohort studies may remove a disproportionate number of women with breast cancer. Researchers excluding or otherwise using anticancer medicine dispensing to identify people with cancer in pharmacoepidemiological studies should acknowledge the potential biases introduced to their findings.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23173-e23173
Author(s):  
Daniela Gercovich ◽  
Ernesto Gil Deza ◽  
Flavio Tognelli ◽  
Carlos Fernando Garcia Gerardi ◽  
Claudia Lorena Acuna ◽  
...  

e23173 Background: “The suicide rate in cancer patients is twice that observed in the general population in the United States” (JNCI vol 100, 24, page 1750, 2008). This paper focuses ona population with great psychological risk: cancer patients (Pt) with previous suicide attempts (SA) or a family history of suicide (FS); both grouped under SAFS for the purpose of this study. Methods: Between 9/26/2012 and 11/28/2018 all new patients (Pt) admitted to IOHM filled out a Past Medical History Form (PMHF) (ASCO 2013 ABST. e17539) with their preexisting clinical conditions. The database was locked and anonymized. Those with a history of SAFS before cancer diagnosis were selected. Results: Out of 15,617 Pt, 184 Pt (1.2%) were SAFS(141 Pt were SA, 39 Pt were FS and 4 Pt were both). The relative risk ofSA was ten times larger for those with FS. Psychiatric Medication: Antipsychotics: 15Pt (8%), Antidepressants: 23 Pt (12%) and Benzodiazepines 45 Pt(24%), No treatment 101 Pt (55%). Population Characteristics: Sex: F:144 Pt . M: 40 Pt. Age: 56y (r = 26-88). Tumor Dx: Breast (65 Pt ) - Gastrointestinal (24 Pt) - Urological (21 Pt ) - Lung (21 Pt ) -Gynecological (19 Pt) - Hematological (11 Pt) -Head &Neck (8 Pt) - Endocrine (7 Pt) - Other (8 Pt). Stages: Early (0-I-II-III): 130 Pt, Advanced: 54 Pt. Ob-Gyn history:25 Pt (17%) nulliparous, 18 Pt (12%) with one child, 77 Pt (53%) with 2 or 3 children and 24 Pt (17%) with more than 3 children; 62 Pt (43%) had previous abortions. Average severe comorbidities (respiratory and psychiatric) was 3 per Pt (r = 0-18). Toxic habits: Smoking: 120 Pt (65%), Alcohol: 37 Pt (20%) and Illicit Drugs: 4 Pt (2%). Follow-up: 19 months (r = 0-70). No Pt had any SA, or commited suicide, during the follow-up.Living patients:177 (96%). Conclusions: 1) In our vast cohort, 184 Pt (1.2%) were identified as highly vulnerable psychiatric Pt due to SAFS. 2) Given the high psychological risk and stressful cancer diagnosis, 83 Pt (45%) were prescribed psychiatric drugs. 3) Follow-up of SAFS Pt by a multidisciplinary team is requiredfor adequate Pt and family support.


2016 ◽  
Vol 116 (3) ◽  
pp. 381-389 ◽  
Author(s):  
Norman J. Temple

AbstractLarge numbers of randomised controlled trials (RCT) have been carried out in order to investigate diet–disease relationships. This article examines eight sets of studies and compares the findings with those from epidemiological studies (cohort studies in seven of the cases). The studies cover the role of dietary factors in blood pressure, body weight, cancer and heart disease. In some cases, the findings from the two types of study are consistent, whereas in other cases the findings appear to be in conflict. A critical evaluation of this evidence suggests factors that may account for conflicting findings. Very often RCT recruit subjects with a history of the disease under study (or at high risk of it) and have a follow-up of only a few weeks or months. Cohort studies, in contrast, typically recruit healthy subjects and have a follow-up of 5–15 years. Owing to these differences, findings from RCT are not necessarily more reliable than those from well-designed prospective cohort studies. We cannot assume that the results of RCT can be freely applied beyond the specific features of the studies.


2021 ◽  
Vol 156 (Supplement_1) ◽  
pp. S162-S162
Author(s):  
J G Zinni ◽  
D Mullins ◽  
P J DeChristopher ◽  
G Ramsey ◽  
B Vission ◽  
...  

Abstract Introduction/Objective Kidd antigens can bind complement (C3) as well as Kidd specific warm autoantibodies (WAAb). An 838G>A single nucleotide variant (SNV) defines JK*01 and JK*02 which codes the antithetical Jka and Jk b, respectively. Both alleles translate the high prevalence (>99%) Jk3 (JK3). The 130G>A is associated with weak Jka and weak Jkb expression. In vivo binding of non-agglutinating globulins can cause false-negative phenotypes by means of the blocked antigen phenomenon (BAP). Methods/Case Report Transfusions were requested for a 74-year-old Caucasian (CA) female with Evan’s Syndrome, and an 85-year-old African American (AA) female with metastatic uterine cancer. Both had a history of nonspecific WAAb. Direct antiglobulin testing (DAT) detected moderate in vivo sensitization of IgG and C3. They phenotyped Jk(a- b-) with untreated and EDTA glycine-acid (EGA) treated IgG DAT-negative cells. Their serum contained anti-Jk3 reactivity, while a panreactive WAAb in the eluate reacted with Jk3- donor and EGA treated DAT-negative autologous cells. Weak anti-Jka and anti-Jkb reactivity remained in the alloadsorbed serum of the antithetical adsorbing cells. Genetic testing of the CA revealed JK*01W.01(130A)/02 alleles, while cDNA confirmed the alleles would be transcribed into mRNA. Sequencing of the AA detected 130G/A, and 838G/A as well as other silent mutations predicting either a Jk(a+wb+) or Jk(a+b+w) phenotype. The CA received one compatible JK:-3 transfusion, and both individuals benefited from multiple least incompatible transfusions of Jk a+ and/or Jk b+ donors with expected hemoglobin increases (1 g/dL per transfusion). The CA serologically phenotyped Jk(a-b+) 132 days later following prolonged immunosuppressive therapy while a normocytic normochromic anemia and the WAAb persisted. No follow up evaluations of the AA are available. Results (if a Case Study enter NA) NA Conclusion Unexpected BAP can confound immunohematology testing and lead WAAbs mimicking alloanti-Jk3 to be mischaracterized as allogeneic. By predicting phenotypes, genetic analysis can aid serological techniques in antibody characterization and help circumvent complications searching for rare JK:-3 donors.


2021 ◽  
Vol 3 (Supplement_6) ◽  
pp. vi22-vi22
Author(s):  
Laureline Gatellier ◽  
Yuko Moue ◽  
Tomohiro Matsuda

Abstract Background: Rare Cancers Japan (RCJ) consists of members of 20 rare cancer patient groups and individual rare cancer patients, including the Japan Brain Tumor Alliance (JBTA), the Pediatric Brain Tumor Network, and the DIPG Symposium Organizing Committee, and aims to solve the challenges of rare cancers. RCJ, together with the National Cancer Center Japan and the Japan Federation of Cancer Patient Groups is currently conducting a survey to clarify unmet needs of patients, as a follow-up survey to surveys conducted in 2018. Since then, a major paradigm shift happened in Japan, with the advent of genomic medicine and development of new treatments. This study plans to identify the latest unmet needs of cancer patients and to clarify the differences between cancer types to provide data for the improvement of healthcare systems.Purpose: Focusing on unmet needs of cancer patients, we conduct an online questionnaire survey of a total of 1,600 cancer patients (including brain tumor patients) regarding the following endpoints (1) detection and diagnosis, (2) treatment, (3) genomic medicine (access to genetic mutation testing), (4) clinical trials, (5) necessary information, medical care and support systems and (6) quality of life. The collected information will be analyzed to clarify the needs of patients and the nature of patient-centered healthcare. Method: The survey will be administered online, including a mix of open-ended and multiple-choice questions. The total number of questions, including respondent demographics, is 38, and the time required to answer them is expected to be between 15 and 20 minutes. Data analysis will take into account cancer type of cancer, gender, age group and region of residence of the respondent.Expected results: By February 2022, the results of the survey are expected to be available, as basis of discussion to improve brain tumor treatment and follow up, from a multidisciplinary perspective.


2020 ◽  
Vol 2020 ◽  
pp. 1-6
Author(s):  
Laura Pérez-Campos Mayoral ◽  
María Teresa Hernández-Huerta ◽  
Gabriel Mayoral-Andrade ◽  
Eduardo Pérez-Campos Mayoral ◽  
Edgar Zenteno ◽  
...  

The debate regarding the cutoff point in the treatment of patients with subclinical hypothyroidism (Shypo) is ongoing. Generally, two different groups are identified for treatment by levels of 10 and 20 mIU/L. Nevertheless, the question remains, “what cutoff point should be chosen?” We have written a selective nonsystematic review focused on the 97.5 percentile reference value reported in healthy subjects in a number of countries and observed important disparities, which partly show the challenge of identifying a single cutoff point for those patients needing medication. We identified studies of TSH on the natural history of subclinical hypothyroidism from population-based prospective cohort studies, which follow up patients for several years. The evolution of TSH levels in these patients is variable. Some cases of TSH may return to lower levels at different stages over the years, but others may not, possibly even developing into overt thyroid failure, also variable. We analyzed factors that may explain the normalization of serum TSH levels. In addition, we found that thorough population-based prospective cohort studies following up on TSH levels, thyroid antibodies, and ultrasonography are important in decisions made in the treatment of patients. However, the 97.5 percentile reference value varies in different countries; therefore, an international cutoff point for subclinical hypothyroidism cannot be recommended.


2017 ◽  
Vol 77 (4) ◽  
pp. 510-514 ◽  
Author(s):  
Lene Dreyer ◽  
René L Cordtz ◽  
Inger Marie J Hansen ◽  
Lars Erik Kristensen ◽  
Merete L Hetland ◽  
...  

ObjectiveTo study the risk of a second malignant neoplasm (SMN) and mortality in patients with rheumatoid arthritis (RA) with a history of a primary cancer diagnosis and treated with biological disease-modifying antirheumatic drugs (bDMARD).MethodsAmong patients with RA (n=15 286) registered in the DANBIO Register during 2000–2011, 1678 had a primary cancer according to the Danish Cancer Registry. HRs for SMN and death were calculated.ResultsDuring follow-up there were 279 patients with RA contributing person-years to the bDMARDs use before their primary cancer diagnosis, 220 to the only after, 92 to the both before and after, while 1203 patients with RA contributed to the non-use strata. Ever use of bDMARDs was associated with a HR of 1.11 (95% CI 0.74 to 1.67) for developing a SMN compared with non-use (cancer site adjusted). The HR for death associated with bDMARD use before the primary cancer diagnosis was increased 1.53 (95% CI 1.13 to 2.09). After further adjustment for extent of the primary cancer, the HR for death was 1.20 (95% CI 0.88 to 1.63) for bDMARDs use before cancer, 1.36 (95% CI 0.78 to 2.39) for bDMARD use only after cancer and 1.22 (95% CI 0.70 to 2.13) for use both before and after the cancer.ConclusionsAmong patients with RA with a history of cancer, treatment with bDMARDs was not associated with increased risk of SMN. No clear conclusion can be drawn regarding mortality in bDMARD-treated patients with RA.


Author(s):  
Benjamin Daniels ◽  
Hanna E Tervonen ◽  
Sallie-Anne Pearson

IntroductionDispensing claims are used commonly as proxy measures in pharmacoepidemiological studies; however, their validity is often untested. ObjectivesTo assess the performance of a proxy for identifying cancer cases based on the dispensing of anticancer medicines and estimate the misclassification of cancer status and potential for bias researchers may encounter when using this proxy. MethodsWe conducted our validation study using Department of Veterans’ Affairs (DVA) client data linked with the New South Wales (NSW) Cancer Registry and Repatriation Pharmaceutical Benefits Scheme data. We included DVA clients aged ≥65 years residing in NSW between July 2004 and December 2012. We matched clients with a cancer diagnosis to clients without a diagnosis based on demographic characteristics and available observation time. We used dispensing claims for anticancer medicines dispensed between July 2004 and December 2013 as a proxy to identify clients with cancer and calculated sensitivity, specificity, positive predictive values and negative predictive values compared with cancer registrations (gold standard), overall and by cancer site. We illustrated misclassification by the proxy in a cohort of people initiating opioid therapy. Using the proxy, we excluded people with cancer from the cohort, in an attempt to delineate people potentially using opioids for cancer rather than chronic non-cancer pain. ResultsWe identified 15,679 new cancer diagnoses in 14,112 DVA clients from the cancer registry and 62,663 clients without a diagnosis. Sensitivity of the proxy based on dispensing claims was 30% for all cancers and around 20% for specific cancers (range: 10-67%). Specificity was above 90% for all cancers. The dispensing proxy correctly identified 26% of people with a cancer diagnosis who initiated opioid therapy and failed to identify 74% those with a cancer diagnosis; the proxy was most robust for clients with breast cancer where 61% were correctly identified by proxy. ConclusionsDispensings of anticancer medicines as a proxy for people with a cancer diagnosis performed poorly. Excluding patients with evidence of anticancer medicine use from cohort studies may result removal of a disproportionate number of women with breast cancer. Researchers excluding or otherwise using anticancer medicine dispensing to identify people with cancer in pharmacoepidemiological studies should acknowledge the potential biases introduced to their findings.


2017 ◽  
Vol 35 (4_suppl) ◽  
pp. 188-188
Author(s):  
Grace Tang ◽  
Rachel Hart ◽  
Michelle Sholzberg ◽  
Christine Brezden-Masley

188 Background: Gastric cancer is highly prevalent amongst men and women. While many studies have identified the prevalence and association of iron deficiency anemia (IDA) in all cancer patients, few have focused on the gastric cancer population. The primary objective of this study was to determine the proportion of patients with gastric cancer who developed IDA, and chemotherapy induced anemia (CIA) at our institution. Secondary objectives were to identify types and frequencies of IDA therapies used. Methods: A retrospective study was carried out in 110 consecutive gastric cancer patients from 2006 to 2014 at St. Michael’s Hospital, Toronto, Canada. Patient demographics, previous history of IDA, and IDA based therapies were reviewed. IDA was defined as hemoglobin (Hb) < 130 g/L in men and < 120g/L in women and iron deficiency (ID) was defined as a ferritin < 15m/L. SAS 9.3 was used to calculate frequencies and proportions. Results: Of the 110 patients (median age 68.5 [interquartile range (IQR): 58-76]), 72 (65%) were male. Most patients were diagnosed at stage IV (35%) with a mean Hb of 118 g/L (standard deviation (SD): 19.7 g/L). Only 18 (16%) patients had a history of IDA prior to cancer diagnosis, and 63 (57%) had IDA at time of gastric cancer diagnosis. Only 29 patients (45%) had ferritin levels tested at first oncology visit. Of the 110 patients, 71 patients had an open (32%) or laparoscopic (68%) surgery. A total of 66 patients received chemotherapy, and 50 (76%) developed CIA. In this sample, 9 (14%) experienced a chemotherapy dose delay and 20 (30%) had a dose reduction. At last follow up, 87 (79%) of patients were diagnosed with IDA. Red blood cell (RBC) transfusions were most frequently prescribed (95%), compared to oral (29%) or intravenous iron (12%). Conclusions: A total of 87 (79%) gastric cancer patients were diagnosed with IDA and nearly all patients received a RBC transfusion. We found that the diagnosis of IDA increased by 22% from the time of gastric cancer diagnosis to last follow up. There was a high proportion of IDA in our gastric cancer population despite inconsistent screening for ID. This highlights the need for consistent screening and targeted therapy for ID to reduce transfusions and improve quality of life in this patient population.


2011 ◽  
Vol 29 (18) ◽  
pp. 2466-2473 ◽  
Author(s):  
Elena B. Elkin ◽  
Michelle L. Klem ◽  
Anne Marie Gonzales ◽  
Nicole M. Ishill ◽  
David Hodgson ◽  
...  

Purpose To compare characteristics and outcomes of breast cancer in women with and without a history of radiation therapy (RT) for Hodgkin's lymphoma (HL). Patients and Methods Women with breast cancer diagnosed from 1980 to 2006 after RT for HL were identified from eight North American hospitals and were matched three-to-one with patients with sporadic breast cancer by age, race, and year of breast cancer diagnosis. Information on patient, tumor and treatment characteristics, and clinical outcomes was abstracted from medical records. Results A total of 253 patients with breast cancer with a history of RT for HL were matched with 741 patients with sporadic breast cancer. Median time from HL to breast cancer diagnosis was 18 years. Median age at breast cancer diagnosis was 42 years. Breast cancer after RT for HL was more likely to be detected by screening, was more likely to be diagnosed at an earlier stage, and was more likely to be bilateral at diagnosis. HL survivors had an increased risk of metachronous contralateral breast cancer (adjusted hazard ratio [HR], 4.3; 95% CI, 1.7 to 11.0) and death as a result of any cause (adjusted HR, 1.9; 95% CI, 1.1 to 3.3). Breast cancer–specific mortality was also elevated, but this difference was not statistically significant (adjusted HR, 1.6; 95% CI, 0.7 to 3.4). Conclusion In women with a history of RT for HL, breast cancer is diagnosed at an earlier stage, but these women are at greater risk for bilateral disease and are more likely to die as a result of causes other than breast cancer. Our findings support close follow-up for contralateral tumors in these patients and ongoing primary care to manage comorbid conditions.


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