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      “I Haven’t Been Diagnosed, but I Should Be”—Insight Into Self-diagnoses of Common Mental Health Disorders: Cross-sectional Study


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          In recent years, social media has become a rich source of mental health data. However, there is a lack of web-based research on the accuracy and validity of self-reported diagnostic information available on the web.


          An analysis of the degree of correspondence between self-reported diagnoses and clinical indicators will afford researchers and clinicians higher levels of trust in social media analyses. We hypothesized that self-reported diagnoses would correspond to validated disorder-specific severity questionnaires across 2 large web-based samples.


          The participants of study 1 were 1123 adults from a national Qualtrics panel (mean age 34.65, SD 12.56 years; n=635, 56.65% female participants,). The participants of study 2 were 2237 college students from a large university in the Midwest (mean age 19.08, SD 2.75 years; n=1761, 75.35% female participants). All participants completed a web-based survey on their mental health, social media use, and demographic information. Additionally, the participants reported whether they had ever been diagnosed with a series of disorders, with the option of selecting “Yes”; “No, but I should be”; “I don’t know”; or “No” for each condition. We conducted a series of ANOVA tests to determine whether there were differences among the 4 diagnostic groups and used post hoc Tukey tests to examine the nature of the differences.


          In study 1, for self-reported mania ( F 3,1097=2.75; P=.04), somatic symptom disorder ( F 3,1060=26.75; P<.001), and alcohol use disorder (F 3,1097=77.73; P<.001), the pattern of mean differences did not suggest that the individuals were accurate in their self-diagnoses. In study 2, for all disorders but bipolar disorder ( F 3, 659=1.43; P=.23), ANOVA results were consistent with our expectations. Across both studies and for most conditions assessed, the individuals who said that they had been diagnosed with a disorder had the highest severity scores on self-report questionnaires, but this was closely followed by individuals who had not been diagnosed but believed that they should be diagnosed. This was especially true for depression, generalized anxiety, and insomnia. For mania and bipolar disorder, the questionnaire scores did not differentiate individuals who had been diagnosed from those who had not.


          In general, if an individual believes that they should be diagnosed with an internalizing disorder, they are experiencing a degree of psychopathology similar to those who have already been diagnosed. Self-reported diagnoses correspond well with symptom severity on a continuum and can be trusted as clinical indicators, especially in common internalizing disorders such as depression and generalized anxiety disorder. Researchers can put more faith into patient self-reports, including those in web-based experiments such as social media posts, when individuals report diagnoses of depression and anxiety disorders. However, replication and further study are recommended.

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          Most cited references52

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          The PHQ-9: validity of a brief depression severity measure.

          While considerable attention has focused on improving the detection of depression, assessment of severity is also important in guiding treatment decisions. Therefore, we examined the validity of a brief, new measure of depression severity. The Patient Health Questionnaire (PHQ) is a self-administered version of the PRIME-MD diagnostic instrument for common mental disorders. The PHQ-9 is the depression module, which scores each of the 9 DSM-IV criteria as "0" (not at all) to "3" (nearly every day). The PHQ-9 was completed by 6,000 patients in 8 primary care clinics and 7 obstetrics-gynecology clinics. Construct validity was assessed using the 20-item Short-Form General Health Survey, self-reported sick days and clinic visits, and symptom-related difficulty. Criterion validity was assessed against an independent structured mental health professional (MHP) interview in a sample of 580 patients. As PHQ-9 depression severity increased, there was a substantial decrease in functional status on all 6 SF-20 subscales. Also, symptom-related difficulty, sick days, and health care utilization increased. Using the MHP reinterview as the criterion standard, a PHQ-9 score > or =10 had a sensitivity of 88% and a specificity of 88% for major depression. PHQ-9 scores of 5, 10, 15, and 20 represented mild, moderate, moderately severe, and severe depression, respectively. Results were similar in the primary care and obstetrics-gynecology samples. In addition to making criteria-based diagnoses of depressive disorders, the PHQ-9 is also a reliable and valid measure of depression severity. These characteristics plus its brevity make the PHQ-9 a useful clinical and research tool.
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            Validation of the Insomnia Severity Index as an outcome measure for insomnia research.

            C. Bastien (2001)
            Background: Insomnia is a prevalent health complaint that is often difficult to evaluate reliably. There is an important need for brief and valid assessment tools to assist practitioners in the clinical evaluation of insomnia complaints.Objective: This paper reports on the clinical validation of the Insomnia Severity Index (ISI) as a brief screening measure of insomnia and as an outcome measure in treatment research. The psychometric properties (internal consistency, concurrent validity, factor structure) of the ISI were evaluated in two samples of insomnia patients.Methods: The first study examined the internal consistency and concurrent validity of the ISI in 145 patients evaluated for insomnia at a sleep disorders clinic. Data from the ISI were compared to those of a sleep diary measure. In the second study, the concurrent validity of the ISI was evaluated in a sample of 78 older patients who participated in a randomized-controlled trial of behavioral and pharmacological therapies for insomnia. Change scores on the ISI over time were compared with those obtained from sleep diaries and polysomnography. Comparisons were also made between ISI scores obtained from patients, significant others, and clinicians.Results: The results of Study 1 showed that the ISI has adequate internal consistency and is a reliable self-report measure to evaluate perceived sleep difficulties. The results from Study 2 also indicated that the ISI is a valid and sensitive measure to detect changes in perceived sleep difficulties with treatment. In addition, there is a close convergence between scores obtained from the ISI patient's version and those from the clinician's and significant other's versions.Conclusions: The present findings indicate that the ISI is a reliable and valid instrument to quantify perceived insomnia severity. The ISI is likely to be a clinically useful tool as a screening device or as an outcome measure in insomnia treatment research.
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              Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990-2010: a systematic analysis for the Global Burden of Disease Study 2010.

              Measuring disease and injury burden in populations requires a composite metric that captures both premature mortality and the prevalence and severity of ill-health. The 1990 Global Burden of Disease study proposed disability-adjusted life years (DALYs) to measure disease burden. No comprehensive update of disease burden worldwide incorporating a systematic reassessment of disease and injury-specific epidemiology has been done since the 1990 study. We aimed to calculate disease burden worldwide and for 21 regions for 1990, 2005, and 2010 with methods to enable meaningful comparisons over time. We calculated DALYs as the sum of years of life lost (YLLs) and years lived with disability (YLDs). DALYs were calculated for 291 causes, 20 age groups, both sexes, and for 187 countries, and aggregated to regional and global estimates of disease burden for three points in time with strictly comparable definitions and methods. YLLs were calculated from age-sex-country-time-specific estimates of mortality by cause, with death by standardised lost life expectancy at each age. YLDs were calculated as prevalence of 1160 disabling sequelae, by age, sex, and cause, and weighted by new disability weights for each health state. Neither YLLs nor YLDs were age-weighted or discounted. Uncertainty around cause-specific DALYs was calculated incorporating uncertainty in levels of all-cause mortality, cause-specific mortality, prevalence, and disability weights. Global DALYs remained stable from 1990 (2·503 billion) to 2010 (2·490 billion). Crude DALYs per 1000 decreased by 23% (472 per 1000 to 361 per 1000). An important shift has occurred in DALY composition with the contribution of deaths and disability among children (younger than 5 years of age) declining from 41% of global DALYs in 1990 to 25% in 2010. YLLs typically account for about half of disease burden in more developed regions (high-income Asia Pacific, western Europe, high-income North America, and Australasia), rising to over 80% of DALYs in sub-Saharan Africa. In 1990, 47% of DALYs worldwide were from communicable, maternal, neonatal, and nutritional disorders, 43% from non-communicable diseases, and 10% from injuries. By 2010, this had shifted to 35%, 54%, and 11%, respectively. Ischaemic heart disease was the leading cause of DALYs worldwide in 2010 (up from fourth rank in 1990, increasing by 29%), followed by lower respiratory infections (top rank in 1990; 44% decline in DALYs), stroke (fifth in 1990; 19% increase), diarrhoeal diseases (second in 1990; 51% decrease), and HIV/AIDS (33rd in 1990; 351% increase). Major depressive disorder increased from 15th to 11th rank (37% increase) and road injury from 12th to 10th rank (34% increase). Substantial heterogeneity exists in rankings of leading causes of disease burden among regions. Global disease burden has continued to shift away from communicable to non-communicable diseases and from premature death to years lived with disability. In sub-Saharan Africa, however, many communicable, maternal, neonatal, and nutritional disorders remain the dominant causes of disease burden. The rising burden from mental and behavioural disorders, musculoskeletal disorders, and diabetes will impose new challenges on health systems. Regional heterogeneity highlights the importance of understanding local burden of disease and setting goals and targets for the post-2015 agenda taking such patterns into account. Because of improved definitions, methods, and data, these results for 1990 and 2010 supersede all previously published Global Burden of Disease results. Bill & Melinda Gates Foundation. Copyright © 2012 Elsevier Ltd. All rights reserved.

                Author and article information

                JMIR Form Res
                JMIR Form Res
                JMIR Formative Research
                JMIR Publications (Toronto, Canada )
                13 January 2023
                : 7
                : e39206
                [1 ] Department of Psychological and Brain Sciences Indiana University Bloomington Bloomington, IN United States
                [2 ] Department of Applied Health Science School of Public Health Indiana University Bloomington Bloomington, IN United States
                [3 ] Luddy School of Informatics, Computing, and Engineering Indiana University Bloomington Bloomington, IN United States
                Author notes
                Corresponding Author: Lauren A Rutter larutter@ 123456iu.edu
                Author information
                ©Lauren A Rutter, Jacqueline Howard, Prabhvir Lakhan, Danny Valdez, Johan Bollen, Lorenzo Lorenzo-Luaces. Originally published in JMIR Formative Research (https://formative.jmir.org), 13.01.2023.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included.

                : 3 May 2022
                : 10 October 2022
                : 2 December 2022
                : 5 December 2022
                Original Paper
                Original Paper

                assessment,depression,anxiety,self-report,social media
                assessment, depression, anxiety, self-report, social media


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