Validity of self-reported cancer history in the health examinees (HEXA) study: A comparison of self-report and cancer registry records

2017 ◽  
Vol 50 ◽  
pp. 16-21 ◽  
Author(s):  
Sooyoung Cho ◽  
Aesun Shin ◽  
Daesub Song ◽  
Jae Kyung Park ◽  
Yeonjung Kim ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Self Report ◽  
Cancer History

Sensitivity and specificity of self-reported cancer history compared to cancer registry.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 234-234 ◽  
Author(s):  
Craig Earle
Keyword(s):  
Sensitivity And Specificity ◽  
Cancer Registry ◽  
Metastatic Potential ◽  
Self Report ◽  
Health Study ◽  
Baseline Survey ◽  
Administrative Claims ◽  
Cancer History ◽  
Match Rate ◽  
Ontario Cancer Registry

234 Background: The Ontario Health Study (OHS) is a large prospective epidemiologic cohort study in which any Ontario resident eighteen years of older may enroll regardless of prior medical history. Baseline data are collected using web-based tools. As part of the consent process, participants are asked for consent to link study data with administrative and health care claims databases, including the Ontario Cancer Registry (OCR). There is an option to enter their Health Insurance Number (HIN) for this purpose. The purpose of this study was to link these data and evaluate the accuracy of self-reported cancer history compared to the cancer registry. Methods: Consenting participants that provided HINs were deterministically linked to the administrative data. Those that did not were probabilistically linked using name, sex and date of birth. Cancer registry records indicating a cancer diagnosed before the date of completion of the OHS baseline survey were considered the gold standard. Concordance, sensitivity, and specificity were assessed. Results: OHS records were successfully linked to administrative claims data and the Ontario Cancer Registry (OCR) with an 85.13% match rate. The final cohort consisted of 139,798 participants. A personal history of cancer was reported by 13,171 of these subjects, out of which 10,066 were found with a record in the OCR. The sensitivity of self-report was 77% and the specificity 95%. Excluding cancers diagnosed after the completion of the baseline survey increased sensitivity of self-report to 93%. The main area of discrepancy causing low sensitivity was the self-reporting of non-melanomatous skin cancers in the OHS questionnaire. Conclusions: While some self-over-reporting of cancer history may occur, cancers with lower metastatic potential tend to be under-captured in our provincial cancer registry. These findings have implications for cohort creation for research and quality improvement.

Early impact of the Affordable Care Act (ACA) on financial worry.

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 44-44
Author(s):  
Amy J. Davidoff ◽  
Xin Hu ◽  
Helen M. Parsons ◽  
Zhiyuan Zheng ◽  
Keyword(s):  
Cancer Survivors ◽  
Cancer Survivor ◽  
Self Report ◽  
Cancer History ◽  
Interaction Terms ◽  
Non Melanoma Skin Cancer ◽  
Interview Survey ◽  
Status Interaction ◽  
Linear Probability ◽  
The Impact

44 Background: We examined changes in financial worry for working-aged cancer survivors compared to individuals without a cancer history (controls) after ACA-mandated health insurance enrollment and caps on cost-sharing were implemented in 2014. We hypothesized that cancer survivors would be more likely to report financial worry, and that ACA implementation would reduce financial worry. Methods: We pooled data from the 2013-2014 National Health Interview Survey for adults aged 21-64 years. Cancer survivors were identified based on self-report of ever being told by a physician that they had cancer (excluding non-melanoma skin cancer). Reports of worry about eight financial matters were dichotomized as “very worried” vs. “less worried”; a summary measure captured reports of being “very worried” about any item. Linear probability regressions assessed the impact of being a cancer survivor and the post-ACA period on high financial worry, controlling for demographics and health status. Interaction terms between cancer and post-ACA tested for differential ACA effects for cancer survivors. Results: Compared to controls (n = 50,304), cancer survivors (n = 2,192) were more likely to report being very worried about finances pre-ACA (46.7% vs. 39.6%) and post-ACA (42.3% vs. 36.0%). The ACA was associated with an adjusted 3.9 (CI: 2.9-4.9) percentage point (PPT) decrease in the probability of financial worry overall. Being a cancer survivor was associated with increased likelihood of being very worried about finances overall (PPT = 3.5, CI: 0.8-6.2), medical costs associated with a serious illness (PPT = 3.4, CI: 0.9-5.9) and normal healthcare (PPT = 3.4, CI: 1.1-5.7), having enough money for retirement (PPT = 2.4, CI: 0.0-4.8), and being able to maintain an enjoyable standard of living (PPT = 2.5, CI: 0.3-4.7). The ACA did not affect financial worry for cancer survivors differently than for controls. Conclusions: The ACA was associated with small but significant reductions in financial worry for working-aged adults, with similar effects for cancer survivors and controls. Cancer survivors were more likely to report financial worry, and worried about both paying for healthcare and the ability to maintain an adequate financial position in the short and longer run.

Validity of Self-reported Cancer History: A Comparison of Health Interview Data and Cancer Registry Records

2001 ◽  
Vol 153 (3) ◽  
pp. 299-306 ◽  
Author(s):  
Mayur M. Desai ◽  
Martha Livingston Bruce ◽  
Rani A. Desai ◽  
Benjamin G. Druss
Keyword(s):  
Cancer Registry ◽  
Interview Data ◽  
Cancer History ◽  
Health Interview

scholarly journals Validity of self-reported cancer: Comparison between self-report versus cancer registry records in the Geelong Osteoporosis Study

2020 ◽  
Vol 68 ◽  
pp. 101790
Author(s):  
Stephanie P. Cowdery ◽  
Amanda L. Stuart ◽  
Julie A. Pasco ◽  
Michael Berk ◽  
David Campbell ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Self Report ◽  
Geelong Osteoporosis Study

scholarly journals Assessing cancer history accuracy in primary care electronic health records through cancer registry linkage

2020 ◽  
Author(s):  
Megan Hoopes ◽  
Robert Voss ◽  
Heather Angier ◽  
Miguel Marino ◽  
Teresa Schmidt ◽  
...  
Keyword(s):  
Primary Care ◽  
Electronic Health Records ◽  
Cancer Survivors ◽  
Cancer Patients ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Cancer Site ◽  
Health Records ◽  
Cancer History ◽  
Data Source

Abstract Background Many cancer survivors receive primary care in community health centers (CHCs). Cancer history is an important factor to consider in the provision of primary care, yet little is known about the completeness or accuracy of cancer history data contained in CHC electronic health records (EHRs). Methods We probabilistically linked EHR data from >1.5 million adult CHC patients to state cancer registries in California, Oregon, and Washington and estimated measures of agreement (eg, kappa, sensitivity, specificity). We compared demographic and clinical characteristics of cancer patients as estimated by each data source, evaluating distributional differences with absolute standardized mean differences. Results 74,707 cancer patients were identified between the two sources (EHR only, n = 22,730; registry only, n = 23,616; both, n = 28,361). Nearly half of cancer patients identified in registries were missing cancer documentation in the EHR. Overall agreement of cancer ascertainment in the EHR vs cancer registries (gold standard) was moderate (kappa = 0.535). Cancer site-specific agreement ranged from substantial (eg, prostate and female breast; kappa >0.60) to fair (melanoma and cervix; kappa <0.40). Comparing population characteristics of cancer patients as ascertained from each data source, groups were similar on sex, age, and federal poverty level, but EHR-recorded cases showed greater medical complexity than those ascertained from cancer registries. Conclusions Agreement between EHR and cancer registry data was moderate and varied by cancer site. These findings suggest the need for strategies to improve capture of cancer history information in CHC EHRs to ensure adequate delivery of care and optimal health outcomes for cancer survivors.

Classical social reward signatures in infants with later ASD

2019 ◽  
Vol 42 ◽  
Author(s):  
Teodora Gliga ◽  
Mayada Elsabbagh
Keyword(s):  
Early Development ◽  
Social Motivation ◽  
Self Report ◽  
Social Reward ◽  
Socially Motivated

Abstract Autistic individuals can be socially motivated. We disagree with the idea that self-report is sufficient to understand their social drive. Instead, we underscore evidence for typical non-verbal signatures of social reward during the early development of autistic individuals. Instead of focusing on whether or not social motivation is typical, research should investigate the factors that modulate social drives.

The Relationship Between Hearing Loss Self-Management and Hearing Aid Benefit and Satisfaction

2019 ◽  
Vol 28 (2) ◽  
pp. 274-284 ◽  
Author(s):  
Elizabeth Convery ◽  
Gitte Keidser ◽  
Louise Hickson ◽  
Carly Meyer
Keyword(s):  
Decision Making ◽  
Hearing Loss ◽  
Hearing Aids ◽  
Clinical Decision Making ◽  
Hearing Aid ◽  
Well Being ◽  
Self Report ◽  
Self Management ◽  
Hearing Aid Benefit ◽  
The Relationship

Purpose Hearing loss self-management refers to the knowledge and skills people use to manage the effects of hearing loss on all aspects of their daily lives. The purpose of this study was to investigate the relationship between self-reported hearing loss self-management and hearing aid benefit and satisfaction. Method Thirty-seven adults with hearing loss, all of whom were current users of bilateral hearing aids, participated in this observational study. The participants completed self-report inventories probing their hearing loss self-management and hearing aid benefit and satisfaction. Correlation analysis was used to investigate the relationship between individual domains of hearing loss self-management and hearing aid benefit and satisfaction. Results Participants who reported better self-management of the effects of their hearing loss on their emotional well-being and social participation were more likely to report less aided listening difficulty in noisy and reverberant environments and greater satisfaction with the effect of their hearing aids on their self-image. Participants who reported better self-management in the areas of adhering to treatment, participating in shared decision making, accessing services and resources, attending appointments, and monitoring for changes in their hearing and functional status were more likely to report greater satisfaction with the sound quality and performance of their hearing aids. Conclusion Study findings highlight the potential for using information about a patient's hearing loss self-management in different domains as part of clinical decision making and management planning.

Use of a Mild-Gain Hearing Aid by Middle-Age Normal-Hearing Adults Who Do and Do Not Self-Report Trouble Hearing in Background Noise

2020 ◽  
Vol 29 (3) ◽  
pp. 419-428
Author(s):  
Jasleen Singh ◽  
Karen A. Doherty
Keyword(s):  
Hearing Aids ◽  
Background Noise ◽  
Middle Age ◽  
Hearing Aid ◽  
Normal Hearing ◽  
Self Report ◽  
Hearing Aid Use ◽  
Hearing Handicap ◽  
Before And After ◽  
Hearing Problems

Purpose The aim of the study was to assess how the use of a mild-gain hearing aid can affect hearing handicap, motivation, and attitudes toward hearing aids for middle-age, normal-hearing adults who do and do not self-report trouble hearing in background noise. Method A total of 20 participants (45–60 years of age) with clinically normal-hearing thresholds (< 25 dB HL) were enrolled in this study. Ten self-reported difficulty hearing in background noise, and 10 did not self-report difficulty hearing in background noise. All participants were fit with mild-gain hearing aids, bilaterally, and were asked to wear them for 2 weeks. Hearing handicap, attitudes toward hearing aids and hearing loss, and motivation to address hearing problems were evaluated before and after participants wore the hearing aids. Participants were also asked if they would consider purchasing a hearing aid before and after 2 weeks of hearing aid use. Results After wearing the hearing aids for 2 weeks, hearing handicap scores decreased for the participants who self-reported difficulty hearing in background noise. No changes in hearing handicap scores were observed for the participants who did not self-report trouble hearing in background noise. The participants who self-reported difficulty hearing in background noise also reported greater personal distress from their hearing problems, were more motivated to address their hearing problems, and had higher levels of hearing handicap compared to the participants who did not self-report trouble hearing in background noise. Only 20% (2/10) of the participants who self-reported trouble hearing in background noise reported that they would consider purchasing a hearing aid after 2 weeks of hearing aid use. Conclusions The use of mild-gain hearing aids has the potential to reduce hearing handicap for normal-hearing, middle-age adults who self-report difficulty hearing in background noise. However, this may not be the most appropriate treatment option for their current hearing problems given that only 20% of these participants would consider purchasing a hearing aid after wearing hearing aids for 2 weeks.

Determining Emotional Tone and Verbal Behavior in Patients With Tinnitus and Hyperacusis: An Exploratory Mixed-Methods Study

2019 ◽  
Vol 28 (3) ◽  
pp. 660-672
Author(s):  
Suzanne H. Kimball ◽  
Toby Hamilton ◽  
Erin Benear ◽  
Jonathan Baldwin
Keyword(s):  
Mixed Methods ◽  
Verbal Behavior ◽  
Coping Strategies ◽  
Mixed Methods Study ◽  
Self Report ◽  
Anxiety And Depression ◽  
Negative Consequences ◽  
Emotional Tone ◽  
Explanatory Mixed Methods ◽  
Quantitative Results

Purpose The purpose of this study was to evaluate the emotional tone and verbal behavior of social media users who self-identified as having tinnitus and/or hyperacusis that caused self-described negative consequences on daily life or health. Research Design and Method An explanatory mixed-methods design was utilized. Two hundred “initial” and 200 “reply” Facebook posts were collected from members of a tinnitus group and a hyperacusis group. Data were analyzed via the LIWC 2015 software program and compared to typical bloggers. As this was an explanatory mixed-methods study, we used qualitative thematic analyses to explain, interpret, and illustrate the quantitative results. Results Overall, quantitative results indicated lower overall emotional tone for all categories (tinnitus and hyperacusis, initial and reply), which was mostly influenced by higher negative emotion. Higher levels of authenticity or truth were found in the hyperacusis sample but not in the tinnitus sample. Lower levels of clout (social standing) were indicated in all groups, and a lower level of analytical thinking style (concepts and complex categories rather than narratives) was found in the hyperacusis sample. Additional analysis of the language indicated higher levels of sadness and anxiety in all groups and lower levels of anger, particularly for initial replies. These data support prior findings indicating higher levels of anxiety and depression in this patient population based on the actual words in blog posts and not from self-report questionnaires. Qualitative results identified 3 major themes from both the tinnitus and hyperacusis texts: suffering, negative emotional tone, and coping strategies. Conclusions Results from this study suggest support for the predominant clinical view that patients with tinnitus and hyperacusis have higher levels of anxiety and depression than the general population. The extent of the suffering described and patterns of coping strategies suggest clinical practice patterns and the need for research in implementing improved practice plans.

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