Validation Of Case Definitions Research Articles

P123: Cognitive Disorders and Impact on Caregivers: The COGCARE Study protocol

Introduction and objectives:Dementia is associated with a high burden of disease, impacting patients, families and society. Nevertheless, related epidemiological data is becoming outdated, given the difficulties of implementing costly and laborious fieldwork surveys. Data is also difficult to retrieve from health and social services’ information systems. Overall, we must improve the feasibility and validity of case definition regarding dementia and the assessment of caregivers’ consequences. The 10/66 Dementia Research Group diagnostic algorithm is a cross-culturally valid method(1). A ‘short 10/66’ was also validated(2), but not in Portugal. We intend to assess its feasibility and validity in Portuguese samples, using REDcap (a browser-based, metadata-driven software) in mobile devices. Additionally, we aim to assess dementia family caregivers’ subjective burden and psychological distress, contrasting primary care and hospital outpatient settings.Methods:A multicentre mixed-methods study will be conducted on fifty dyads of older people with dementia and their caregivers, plus 150 dyads of ‘controls’ and their close family members, as informants. The ‘short 10/66’ will be administered. Dementia caregivers’ assessments include the Zarit Burden Interview and Self-report Questionnaire. Quantitative analyses will estimate the sensitivity and specificity of the ‘short 10/66’ dementia case definition. Semi-structured qualitative interviews will be conducted with participants and research assistants, exploring their experiences with the assessment process; thematic analysis will then be used.Implications:We expect this study to facilitate the diagnosis of dementia and data collection in health/social services on a routine basis, which will potentially improve the feasibility and decrease the costs of epidemiological surveys and allow for prevalence monitoring in Portugal.

Validation of case definitions of depression derived from administrative data against the CIDI-SF as reference standard: results from the PROspective Qu\xe9bec (PROQ) study

BackgroundAdministrative data have several advantages over questionnaire and interview data to identify cases of depression: they are usually inexpensive, available for a long period of time and are less subject to recall bias and differential classification errors. However, the validity of administrative data in the correct identification of depression has not yet been studied in general populations. The present study aimed to 1) evaluate the sensitivity and specificity of administrative cases of depression using the validated Composite International Diagnostic Interview – Short Form (CIDI-SF) as reference standard and 2) compare the known-groups validity between administrative and CIDI-SF cases of depression.MethodsThe 5487 participants seen at the last wave (2015–2018) of the PROQ cohort had CIDI-SF questionnaire data linked to hospitalization and medical reimbursement data provided by the provincial universal healthcare provider and coded using the International Classification of Disease. We analyzed the sensitivity and specificity of several case definitions of depression from this administrative data. Their association with known predictors of depression was estimated using robust Poisson regression models.ResultsAdministrative cases of depression showed high specificity (≥ 96%), low sensitivity (19–32%), and rather low agreement (Cohen’s kappa of 0.21–0.25) compared with the CIDI-SF. These results were consistent over strata of sex, age and education level and with varying case definitions. In known-groups analysis, the administrative cases of depression were comparable to that of CIDI-SF cases (RR for sex: 1.80 vs 2.03 respectively, age: 1.53 vs 1.40, education: 1.52 vs 1.28, psychological distress: 2.21 vs 2.65).ConclusionThe results obtained in this large sample of a general population suggest that the dimensions of depression captured by administrative data and by the CIDI-SF are partially distinct. However, their known-groups validity in relation to risk factors for depression was similar to that of CIDI-SF cases. We suggest that neither of these data sources is superior to the other in the context of large epidemiological studies aiming to identify and quantify risk factors for depression.

Pelvic floor disorders in women who consult primary care clinics: development and validation of case definitions using primary care electronic medical records.

To date, there has been no validated method to identify cases of pelvic floor disorders in primary care electronic medical record (EMR) data. We aimed to develop and validate symptom-based case definitions for urinary incontinence, fecal incontinence and pelvic organ prolapse in women, for use in primary care epidemiologic or clinical research. Our retrospective study used EMR data from the Southern Alberta Primary Care Research Network (SAPCReN) and the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) in southern Alberta. Trained researchers remotely reviewed a random sample of EMR charts of women aged 18 years or older from 6 rural and urban clinics to validate case definitions for urinary incontinence, fecal incontinence and pelvic organ prolapse. We calculated sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV), and estimated SAPCReN prevalence as appropriate. Charts of 900 women were included. Sensitivity was 81.9% (95% confidence interval [CI] 75.1-87.2) for urinary incontinence, 61.2% (95% CI 46.2-74.5) for fecal incontinence, and 51.8% (95% CI 40.6-62.8) for pelvic organ prolapse. Corresponding specificity values were 71.9% (95% CI 68.4-75.1), 99.2% (95% CI 98.2-99.6) and 98.8% (95% CI 97.7-99.4), PPVs 40.6% (95% CI 35.4-46.0), 81.1% (95% CI 64.3-91.4) and 81.1% (95% CI 67.6-90.1), and NPVs 94.4% (95% CI 92.1-96.1), 97.8% (95% CI 96.5-98.6) and 95.3% (95% CI 93.6-96.6). The SAPCReN-observed prevalence for urinary incontinence was 29.7% (95% CI 29.3-30.0), but the adjusted prevalence was 2.97%. The case definition for urinary incontinence met our standard for validity (sensitivity and specificity > 70%), and the case definitions for fecal incontinence and pelvic organ prolapse had PPVs greater than 80%. The urinary incontinence definition may be used in epidemiologic research, and those for fecal incontinence and pelvic organ prolapse may be used in quality-improvement studies or creation of disease registries. Our symptom-based case definitions could also be adapted for research in other EMR settings.

Chikungunya: important lessons from the Jamaican experience

ABSTRACTObjectives.To describe the clinical presentation of chikungunya virus (CHIKV) illness in adults during the 2014 outbreak in Jamaica and to determine the predictive value of the case definition.Methods.A cross-sectional study was conducted using clinical data from suspected cases of CHIKV that were reported to the Ministry of Health in April – December 2014. In addition, charts were reviewed of all individuals over 15 years of age with suspected CHIKV based on a diagnosis of CHIKV or “acute viral illness” that presented to four major health centers in Jamaica during the week prior to and the peak week of the epidemic. Data abstracted from these charts using a modified CHIKV Case Investigation Form included demographics, clinical findings, and laboratory tests.Results.In 2014, the Ministry of Health of Jamaica received 4 447 notifications of CHIKV infection. PCR testing was conducted on 137 suspected CHIKV cases (56 men and 81 women; median age 28 years) and was positive for 89 (65%) persons. In all, 205 health charts were identified that met the selection criteria (51 men and 154 women, median age 43 years). The most commonly reported symptoms were arthralgia (86%) and fever (76%). Of those who met the epidemiologic case definition for CHIKV as defined by the Pan American Health Organization, only 34% had this diagnosis recorded. Acute viral illness was the most frequently recorded diagnosis (n = 79; 58%).Conclusions.Broader case definitions for acute CHIKV illness may be needed to identify suspected cases during an outbreak. Standardized data collection forms and validation of case definitions may be useful for future outbreaks.

Surgical Treatment of Genital Manifestations of Lymphatic Filariasis: A Systematic Review.

Genital manifestations of lymphatic filariasis (genital LF) are a significant cause of disfigurement and disability in the developing world. Surgery is the standard treatment; however, definitive publications are lacking and best practice remains unclear. An exhaustive search strategy using keyword and subject headings was applied to Medline, EMBASE, Web of Science, CINAHL, and Scopus. Additionally citation lists, Google and Google Scholar, archives of relevant journals and websites were searched systematically. Studies with data on one or more human patient(s) who underwent surgery for genital LF were included. Articles were screened and data extracted by the first author with data verification by the second author. Fifty-seven studies were included: 18 series of ablative surgery, four series of non-ablative surgery and 35 case reports. Poor study quality, heterogeneous case definitions, lack of severity grading and limited follow-up precluded meta-analysis. Two series of simple hydrocelectomies performed in resource-limited settings reported early complication rates of 3.0-3.5 % using eversion and 5-7 % using excision, with recurrence of 7 % and 3-5 %, respectively. Complications were minimal for single-surgeon series and greater (12-18 %) when scrotal reconstruction was performed. There is little useful evidence for lymphatic bypass procedures in genital LF. Under-recognition of atypical manifestation of genital LF leads to potentially unnecessary surgeries. Surgery for genital LF is safe in resource-limited settings; however, more well-designed studies with better follow-up are needed. Research priorities include validation of case definitions and severity grading systems, and solutions to improve post-operative follow-up in resource-limited settings.

Findings from a clinical and laboratory database developed for discovery of pathogenic mechanisms in myalgic encephalomyelitis/chronic fatigue syndrome

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic illness that is often disabling. This paper introduces the Chronic Fatigue Initiative, which conducted a large multi-center study to more fully characterize ME/CFS and ultimately to describe and understand the underlying mechanisms and pathogenesis of this illness. Methods: A total of 203 patients with ME/CFS (cases) and 202 matched healthy controls (HCs) were enrolled from 5 geographically different expert clinical sites to create a well-characterized population linked to a national biorepository. ME/CFS subjects were compared to a one-to-one matched HC population for analyses of symptoms and illness severity. Cases were further evaluated for frequency and severity of symptoms and symptom clusters, and the effects of illness duration and acute vs. gradual onset. Results: This study collected more than 4000 pieces of data from each subject in the study. Marked impairment was demonstrated for cases vs. controls. Symptoms of fatigue were identified, but also, nearly as frequent and severe, were symptoms of cognitive dysfunction, inflammation, pain and autonomic dysfunction. Potential subgrouping strategies were suggested by these identified symptom clusters: sleep, neurocognitive, autonomic, inflammatory, neuroinflammatory, gastrointestinal and endocrine symptoms. Conclusions: Clearly, ME/CFS is not simply a state of chronic fatigue. These data indicate that fatigue severity is matched by cognitive, autonomic, pain, inflammatory and neuroinflammatory symptoms as the predominant clinical features. These findings may assist in the clarification and validation of case definitions. In addition, the data can aid clinicians in recognizing and understanding the overall illness presentation. Framing ME/CFS as a multisystem disorder may assist in developing therapies targeting the multifaceted domains of illness.

Estimating Diabetes Prevalence in the Military Health System Population From 2006 to 2010

Evidence-based articles have demonstrated an increase in diabetes prevalence, but diabetes prevalence in the enrolled Military Health System population was previously understudied. Variability in diabetes prevalence rates calculated from 5 groups of algorithms was examined in the Military Health System population (3 million enrollees per year) from fiscal years 2006 to 2010. Time trend analysis and rate comparisons to the U.S. population were also performed. Increasing linear trends in diabetes prevalence from 2006 to 2010 were seen in all algorithms, though considerable rate variation was observed within each study year. Prevalence increased with age, except for a slight decrease in those ≥75 years. Overall diagnosed diabetes prevalence ranged from 7.26% to 11.22% in 2006 and from 8.29% to 13.55% in 2010. Prevalence among active duty members remained stable, but a significant upward trend was observed among nonactive duty members across study years. Age-standardized rates among nonactive duty females were higher than the U.S. population rates from 2006 to 2010. This study demonstrates prevalence rate variability because of differing case algorithms and shows evidence of a growing diabetes population in the Military Health System, specifically within the nonactive duty 45 years and older demographic groups. Further research of this population should focus on validation of case definitions.

Health care report cards. Validity of case definitions.

Administrative databases are increasingly being used to construct health care report cards. We analyzed information from one of the original report cards, the Medicare Hospital Information Project. Assessment of mortality statistics for three clinical entities--coronary artery bypass surgery, hip reconstruction, and treatment of sepsis--demonstrated widespread outcome variances that reflected imperfect definitions rather than performance issues in clinical care. The use of administrative data sets to design report cards requires clinical expertise to ensure validity of the data. Designers of report card measures should share preliminary data with providers to enable feedback in methods and uncover definitional and validity concerns before widespread dissemination.