Do patients with inflammatory bowel disease really know what other immune-mediated inflammatory diseases they are diagnosed with?

BACKGROUND AND AIMS: The association of inflammatory bowel disease (IBD) with other immune-mediated inflammatory diseases (IMIDs) in the same patient is well known. We aimed to evaluate the degree of knowledge that patients with IBD have regarding the coexistence of other IMIDs and to analyze the factors associated with the concordance between self-reported and confirmed medical information. METHODS: Patients with IBD at a tertiary hospital answered a questionnaire on the presence of 54 IMIDs (self-reported diagnosis), and their IMID diagnosis was confirmed in their medical records (reference diagnosis). Agreement between the self-reported IMID and the IMID according to medical records was evaluated. The association between concordance and different predictors was evaluated using logistic regression models. RESULTS: A total of 1,620 patients were included. Six hundred and twenty-six (39%) patients were diagnosed with at least one IMID, and 177 (11%) with two or more. Overall agreement between patients´ self-report and medical records was k:0.61. When we grouped IMIDs according to affected organs or systems, agreement on rheumatic IMIDs was moderate (k:0.58), whereas agreement on cutaneous (k:0.66), endocrine (k: 0.74) and ocular (k:0.73) IMIDs was substantial. Among patients who had IMIDs, the factor associated with greater concordance was female gender, while lower concordance was associated with a lower educational level and the fact that the IMID had been diagnosed at the same time or later than IBD. CONCLUSION: The knowledge that patients with IBD have regarding the coexistence of other IMIDs is poor, especially in rheumatic IMIDs.

Validation of self-reported morbidities of the Korean Atomic Bomb Survivor Cohort.

Objectives: This study aimed to evaluate the agreement of disease status collected through a survey of the Korean Atomic Bomb Survivor Cohort (K-ABC), compared with medical claim records from the Korean National Health Insurance Service (NHIS) database and the Korean Central Cancer Registry (KCCR). Methods: Data on the lifetime physician-diagnosed morbidities of 1,215 K-ABC participants were collected through an interviewer-administered questionnaire between 2020 and 2022. Survey data were linked to the NHIS and KCCR databases. Eleven diseases were included for validation. We evaluated the following indicators: sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), accuracy, the area under the curve (AUC), and the kappa coefficient. Results: The mean (standard deviation) age was 62.1 (18.7) years, and 42.6% of the participants were aged ≥70 years. Hypertension and cataracts showed the highest prevalence rates (33.8% and 28.8%, respectively). Hypertension, diabetes, and cancer demonstrated high sensitivity (>0.8) and specificity (>0.9), whereas diabetes, cancer, myocardial infarction, angina pectoris, and asthma exhibited high accuracy (>0.9). In contrast, arthritis, allergic rhinitis, and asthma showed low sensitivity (<0.4) and kappa values (<0.3). In the participants aged ≥70 years, the kappa value was ≥0.4 for all diseases except arthritis, allergic rhinitis, and asthma. Conclusion: The results from this initial analysis showed relatively high agreement between the survey and NHIS/KCCR databases, especially for hypertension, diabetes, and cancer. Our findings suggest that the information on morbidities collected through the questionnaires in this cohort was valid for both younger and older individuals.

Distribution of self-reported borderline personality disorder traits symptoms in a large-scale clinical population.

Introduction: Borderline Personality Disorder (BPD) traits play a crucial role in the prognosis of psychiatric disorders, as well as in assessing risks associated with negativity and impulsivity. However, there is a lack of data regarding the distribution characteristics of BPD traits and symptoms within clinical populations. Methods: A total of 3015 participants (1321 males, 1694 females) were consecutively sampled from outpatients at the psychiatric and psycho-counseling clinics at the Shanghai Mental Health Center. BPD symptoms were assessed using a self-reported personality diagnostic questionnaire. Having BPD traits is defined as having five or more positive items in self-reported BPD characteristics. Participants were stratified into male and female groups, age groups, and diagnostic groups (schizophrenia, mood disorders, anxiety disorders). Exploratory factor analysis using principal components analysis was conducted. Three factors were identified: "F1: Affective Instability and Impulsivity", "F2: Interpersonal Unstable and Extreme Reactions", and "F3: Identity Disturbance". Results: Among 3015 participants, 45.9% of the patients self-reported BPD traits. Comparing of male and female patients, there was no statistically significant difference in the occurrence rate of BPD traits (χ2 = 1.835, p=0.176). However, in terms of symptoms, female patients reported more symptoms than male patients. Female patients also exhibited more pronounced features on F2 compared to male patients (t =-1.972, p=0.049). There is a general decrease in BPD traits, symptoms, and factors with increasing age. Specifically, the proportion of positive BPD traits is approximately halved before the age of 30 and decreases to around one-third after the age of 30. BPD traits were most common in the Mood Disorders group at 55.7%, followed by the Anxiety Disorders group at 44.4%, and Schizophrenia group at 41.5% (χ2 = 38.084, p<0.001). Discussion: Our study revealed the pervasive presence of BPD traits and symptoms among psychiatric outpatients, exhibiting distinctive distributions across gender, age, and diagnostic categories. These findings emphasize the significance of identifying and addressing BPD pathology in the clinical care of psychiatric outpatients.

Stability and Validity of Self-Reported Depression and Anxiety in Autistic Youth.

The aim of this study was to assess test-retest reliability and diagnostic validity of self-report instruments of depression and anxiety in autistic youth. Participants were 55 autistic youth aged 8-17 years presenting with depressive or anxiety symptoms. They were interviewed with the Kiddie Schedule for Affective Disorders and Schizophrenia for School-Age Children (K-SADS-PL) and completed the Children's Depression Inventory, Second Edition - Self Report Short (CDI 2:SR[S]) and the Revised Child Anxiety and Depression Scale (RCADS) twice, separated by a two-week interval. Test-retest reliability was measured with intraclass correlation coefficients (ICCs), and diagnostic validity was assessed using receiver operating characteristic (ROC) curves with the summary ratings on the K-SADS-PL as the criterion. The effect of participant characteristics was analyzed through a moderation analysis. Generalized anxiety (GAD) and social anxiety disorder (SOC) were the two most prevalent disorders in the sample. Test-retest reliability for most of the subscales was good (ICC = 0.74 - 0.87), with the exception of the RCADS obsessive-compulsive disorder (OCD) and GAD. The Adaptive Behavior conceptual score was a significant moderator of the reliability of the CDI 2:SR[S]. The ROC analysis suggested the RCADS SOC and the CDI 2:SR[S] to be good screening tools with inadequate specificity when appropriately sensitive cutoff scores are used. Optimal cutoff scores in this sample were lower than originally published. The findings suggest that autistic youth can provide stable reports of anxiety and depressive symptoms over time. Diagnostic validity varied according to the construct and instrument.

Are people consuming the diets they say they are? Self-reported versus estimated adherence to low carbohydrate and low fat diets: National Health and Nutrition Examination Survey, 2007-2018.

BACKGROUND: Mischaracterization of dietary intake by patients and study participants is a common problem that presents challenges to clinical and public health approaches to improve diet quality, identify healthy eating patterns, and reduce the risk of chronic disease. OBJECTIVE: This study examined participants' self-reported adherence to low carbohydrate and low fat diets compared to their estimated adherence using up to two 24-hour recalls. DESIGN: This cross-sectional study acquired data on dietary intake from respondents in the National Health and Nutrition Examination Survey (NHANES) 2007-2018. PARTICIPANTS/SETTING: This study included 30,219 respondents ≥20 y who had complete and reliable dietary data and were not pregnant or breastfeeding. MAIN OUTCOME MEASURES: The main outcome was prevalence of self-reported and estimated adherence to low carbohydrate or low fat diet patterns. STATISTICAL ANALYSES PERFORMED: Self-reported adherence to low carbohydrate or low fat diets was evaluated using responses to questionnaires. Estimated adherence to these diets was assessed using data from up to two 24-hour recalls and usual intake methodology developed by the National Cancer Institute. RESULTS: Of the 1.4% of participants that reported being on a low carbohydrate diet, estimated adherence (<26% energy from carbohydrates) using 24-hour recalls was 4.1%, whereas estimated adherence among those that did not report following a low carbohydrate diet was <1% (P-difference=0.014). Of the 2.0% of participants who reported being on a low fat diet, estimated adherence (<30% energy from fat) was 23.0%, whereas estimated adherence among those that did not report following a low fat diet was 17.8% (P-difference=0.048). CONCLUSIONS: This research demonstrates that most individuals mischaracterized their diet pattern when compared to up to two 24-hour recalls. These findings emphasize the need for clinicians and public health professionals to be cautious when interpreting individuals' self-reported diet patterns, and should aim to collect more detailed dietary data when possible.

Change on the Revised Hearing Handicap Inventory and associated factors: results from a longitudinal cohort study.

OBJECTIVE: Describe how the Revised Hearing Handicap Inventory (RHHI) changes over time and determine associated factors. DESIGN: Data were from a community-based cohort study. Linear regression models were used to estimate mean baseline and final RHHI scores and change (final minus baseline score). Logistic regression models were used to determine factors associated with substantial RHHI change, defined as ±6 points. Factors included baseline age, sex, race, hearing aid use, and baseline pure-tone average (PTA; 0.5, 1.0, 2.0, 4.0 kHz, worse ear). STUDY SAMPLE: This study included 583 participants (mean age: 66.4 [SD 9.1] years; 59.9% female; 14.2% Minority race) with a mean follow-up time of 7.6 (SD 4.9) years. RESULTS: Baseline and final RHHI scores were 7.9 and 9.2 points, corresponding to an average 1.3-point increase in hearing difficulty over time. Most participants (65.4%) did not show substantial RHHI change, whereas 21.4% and 13.2% experienced substantial increase and decrease, respectively. In separate multivariable models, PTA and hearing aid use were associated with substantial increase in hearing difficulty, and PTA was associated with substantial decrease. CONCLUSIONS: The average RHHI change was relatively small. Hearing aid use and PTA were associated with RHHI change.

Psychometric validation of the Montgomery-åsberg Depression Rating Scale - Youth (MADRS-Y) in a clinical sample.

BACKGROUND: Depression in adolescence is a serious major global health problem with increasing rates of prevalence. Measures of depression that are valid for young people are clearly needed in clinical contexts. METHODS: The study included 577 patients from child and adolescent psychiatry (n = 471) and primary care (n = 106) aged 12-22 years in Sweden (Mage=16.7 years; 76% female). The reliability and validity for Montgomery-Åsberg Depression Rating Scale - Youth (MADRS-Y) were investigated. To confirm the latent structure, we used a single-factor confirmatory factor analysis (CFA). A Kruskal-Wallis test was performed to test total score differences between diagnostic groups. Using Spearman's rho correlations, we examine whether single items in the MADRS-Y correlate with suicidal ideation measured by The Suicidal Ideation Questionnaire-JR (SIQ-JR). RESULTS: The internal consistency using McDonald's coefficient omega was excellent. The CFA of the 12-item MADRS-Y supported a one factor structure. Evidence of convergent and discriminant validity was shown. There was a significant difference in MADRS-Y scores across diagnostic groups, with higher results for depressive disorders. A strong correlation with suicidal ideation was found for two items. CONCLUSIONS: The results support MADRS-Y as a brief, reliable, and valid self-report questionnaire of depressive symptoms for young patients in a clinical setting.

The PompeQoL questionnaire: Development and validation of a new measure for children and adolescents with Pompe disease.

Genetic disorders pose great challenges for affected individuals and their families, as they must cope with the irreversible nature of the disease and a life-long dependence on medical assistance and treatment. Children and adolescents dealing with Pompe disease (PD) often struggle to keep up with their peers in physical activities. To gain valuable insights into their subjective experiences and better understand their perception and coping related to daily challenges linked to their condition and treatment, the use of standardized questionnaires is crucial. This study introduces the novel PompeQoL 1.0 questionnaire for children and adolescents with PD, designed for comprehensive assessment of both disease-specific FDH and HRQoL through self- and proxy reports. Content validity was ensured through patients' and parents' involvement at the initial stages of development and in subsequent cognitive debriefing process. Participants found the questionnaire easy to understand, answerable, relevant, and comprehensive. Adjustments based on feedback from patients and their parents improved its utility as a patient- and observer-reported outcome measure. After careful item examination, 52 items were selected, demonstrating moderate to excellent test-retest reliability for most scales and initial evidence for satisfactory construct validity. The PompeQoL questionnaire stands as a valuable screening instrument for both clinical and research purposes. Future research should prioritize additional revisions and larger validation studies, focusing on testing the questionnaire in clinical practice and trials. Nevertheless, the PompeQoL 1.0 stands out as the first standardized measure providing insights into disease-specific FDH and HRQoL among children and adolescents with various forms of PD.

Discrepancies between self-reported medication in adherence and indirect measurement adherence among patients undergoing antiretroviral therapy: a systematic review.

BACKGROUND: Given the critical importance of medication adherence in HIV/AIDS treatment, this study aims to compare medication adherence measured by self-report (SR) and indirect measurement among antiretroviral therapy (ART) patients, exploring the differences of adherence results measured by different tools. METHODS: We systematically searched PubMed, Embase, and the Cochrane Library to identify all relevant literature published up to November 22, 2023, without language restrictions, reporting adherence to ART measured by both SR and indirect measurement methods, while also analyzing individual and group adherence separately. Discrepancies between SR and indirect measurement results were assessed using the Mann-Whitney U test or Wilcoxon signed-rank test, with correlations evaluated using the Pearson correlation coefficient. Following one-to-one comparisons, meta-epidemiological one-step analysis was conducted, and network meta-analysis techniques were applied to compare results obtained through specific adherence assessment tools reported in the identified articles. RESULTS: The analysis encompassed 65 original studies involving 13,667 HIV/AIDS patients, leading to 112 one-to-one comparisons between SR and indirect measurement tools. Statistically significant differences were observed between SR and indirect measurement tools regarding both individual and group adherence (P < 0.05), with Pearson correlation coefficients of 0.843 for individual adherence and 0.684 for group adherence. During meta-epidemiological one-step analysis, SR-measured adherence was determined to be 3.94% (95% CI: -4.48-13.44%) higher for individual adherence and 16.14% (95% CI: 0.81-18.84%) higher for group adherence compared to indirectly measured results. Subgroup analysis indicated that factors such as the year of reporting and geographic region appeared to influence the discrepancies between SR and indirect measurements. Furthermore, network meta-analysis revealed that for both individual and group adherence, the results obtained from most SR and indirect measurement tools were higher than those from electronic monitoring devices, with some demonstrating statistical significance (P < 0.05). CONCLUSIONS: The findings underscored the complexity of accurately measuring medication adherence among ART patients. Significant variability was observed across studies, with self-report methods showing a significant tendency towards overestimation. Year of reporting, geographic region, and adherence measurement tools appeared to influence the differences between SR and indirect measurements. Future research should focus on developing and validating integrated adherence measurements that can combine SR data with indirect measures to achieve a more comprehensive understanding of adherence behaviors.

Improving the reading ease of the Quick Inventory of Depressive Symptomatology - Self Report (QIDS-SR): Development and psychometric properties of an 'Accessible English' version.

Self-report questionnaires are commonly used in depression research with little consideration of their reading ease. This study aimed to increase the reading ease of the commonly-used Quick Inventory of Depressive Symptoms Self Report (QIDS-SR) and assess the impact of the change in wording on the measure's psychometric properties. The study had three phases: 1) Flesh-Kincaid readability statistics of the original and modified wording were compared; 2) a sample of n = 95 participants rated the modified wording for perceived change in meaning and ease of understanding; 3) a second sample of n = 136 participants completed two versions of the QIDS-SR (original, modified, or one of each) alongside the Beck Depression Inventory (BDI). The internal consistency, test-retest reliability and convergent validity of the modified version were assessed. The modified QIDS-SR had significantly higher reading ease, was considered easier to understand and was not perceived to have a significant change in meaning. Its psychometric properties were unaffected. The wording of the questionnaire was successfully simplified to increase its accessibility and this had no notable impact on the psychometric properties of the measure.

Protocol for a systematic review evaluating psychometric properties and gender-related measurement (non)invariance of self-report assessment tools for autism in adults.

BACKGROUND: Given the recent evidence on gender differences in the presentation of autism, there is an increasing concern that current tools for autism do not adequately capture traits more often found in women. If tools for autism measure autistic traits differently based on gender alone, their validity may be compromised as they may not be measuring the same construct across genders. Measurement invariance investigations of autism measures can help assess the validity of autism constructs for different genders. The aim of this systematic review is to identify and critically appraise the psychometric properties of all self-report tools for autism in adults that meet two criteria: (a) they have been published since or included in the NICE (2014) recommendations, and (b) they have undergone gender-related measurement invariance investigations as part of their validation process. METHODS: A search of electronic databases will be conducted from 2014 until the present using MEDLINE, Embase, and PsycINFO using predefined search terms to identify eligible studies. The search for grey literature will include sources such as OpenGrey, APA PsycEXTRA, and Scopus. Two reviewers will independently screen titles, abstracts, and full texts for eligibility. The references of included studies will be searched for additional records. The methodological quality of the studies will be evaluated using the COSMIN Risk of Bias checklist, while psychometric quality of findings will be assessed based on criteria for good measurement properties and ConPsy checklist. The quality of the total body of evidence will be appraised using the approach outlined in the modified GRADE guidelines. DISCUSSION: This systematic review will be among the first to assess the psychometric properties and gender-related measurement invariance of self-reported measures for autism in adults that were published since (or included in) NICE (2014) guidelines. The review will provide recommendations for the most suitable tool to assess for autism without gender bias. If no such measure is found, it will identify existing tools with promising psychometric properties that require further testing, or suggest developing a new measure. SYSTEMATIC REVIEW REGISTRATION: The protocol has been registered at the International Prospective Register of Systematic Reviews (PROSPERO). The registration number is CRD42023429350.

Psychometric properties of the self-report version of the Strengths and Weaknesses of ADHD Symptoms and Normal Behavior Scale in a sample of Hungarian adolescents and young adults.

The Strengths and Weaknesses of ADHD Symptoms and Normal Behaviour Scale (SWAN) measures the full spectrum of attention and activity symptoms, not just the negative end of the distribution. Previous studies revealed strong psychometric properties of the parent and teacher report versions; however, there is little research on the new self-report form of the SWAN. Therefore, our research aimed to explore the psychometric characteristics of the SWAN self-report. A non-clinical sample of young women (N = 664, mean age: 20.01 years, SD: 3.08 years) completed the SWAN self-report, the Strengths and Difficulties Questionnaire (SDQ) and the Mental Health Continuum Short Form (MHC-SF). We tested several models using confirmatory factor analyses to assess the factorial validity of the SWAN self-report. Distributional characteristics, convergent, and predictive validity were assessed. A bifactor model with a general factor and a specific inattention factor (bifactor-1) provided the best fit in our data (CFI = 0.977, TLI/NFI = 0.972, RMSEA = 0.053 [90% CI: 0.047 - 0.059], SRMR = 0.061, ω = 0.90). The reliability of the general ADHD factor was good (ωh = 0.87), and the specific inattention factor was acceptable (ωh = 0.73). The distribution of the SWAN self-report scores did not differ from the normal distribution. A strong correlation between the SWAN and the SDQ Hyperactivity subscale was found. The analyses revealed good predictive validity. Our results suggest that the SWAN self-report is a valuable tool for assessing symptoms of ADHD in adolescents and young adults.

A novel method to monitor rheumatoid arthritis prevalence using hospital and medication databases.

BACKGROUND: Most estimates of rheumatoid arthritis (RA) prevalence, including all official figures in Australia and many other countries, are based on self-report. Self-report has been shown to overestimate RA, but the 'gold standard' of reviewing individual medical records is costly, time-consuming and impractical for large-scale research and population monitoring. This study provides an algorithm to estimate RA cases using administrative data that can be adjusted for use in multiple contexts to provide the first approximate RA cohort in Australia that does not rely on self-report. METHODS: Survey data on self-reported RA and medications from 25 467 respondents of the Australian Longitudinal Study on Women's Health (ALSWH) were linked with data from the national medication reimbursement database, hospital and emergency department (ED) episodes, and Medicare Benefits codes. RA prevalence was calculated for self-reported RA, self-reported RA medications, dispensed RA medications, and hospital/ED RA presentations. Linked data were used to exclude individuals with confounding autoimmune conditions. RESULTS: Of 25 467 survey respondents, 1367 (5·4%) women self-reported disease. Of the 26 840 women with hospital or ED presentations, 292 (1·1%) received ICD-10 codes for RA. There were 1038 (2·8%) cases by the medication database definition, and 294 cases (1·5%) by the self-reported medication definition. After excluding individuals with other rheumatic conditions, prevalence was 3·9% for self-reported RA, 1·9% based on the medication database definition and 0·5% by self-reported medication definition. This confirms the overestimation of RA based on self-reporting. CONCLUSIONS: We provide an algorithm for identifying individuals with RA, which could be used for population studies and monitoring RA in Australia and, with adjustments, internationally. Its balance of accuracy and practicality will be useful for health service planning using relatively easily accessible input data.

Investigating the association between self-reported physical function, temporo-spatial parameters, walking kinematics and community-based ambulatory activity: Analysis of post-operative hip preservation patients.

INTRODUCTION: Wearable sensors provide the ability to assess ambulatory activity in the community after hip preservation surgery (HPS). In combination with gait analysis and patient reported outcomes, more perspective on post-operative function is gained. The purpose of this study was to assess the relationship between self-reported function/activity, temporo-spatial parameters and walking kinematics to objectively measured ambulatory activity. METHODS: Forty-nine participants (38 Females; age range 16-38 years) who were five years or more post-surgery and the following diagnoses were included: Acetabular Dysplasia (n=34), Femoroacetabular Impingement (n=12) and Legg-Calvé Perthes disease (n=3). Participants underwent 3D gait analysis and gait deviations were quantified using the Gait Deviation Index (GDI) and Gait Profile Score (GPS). Temporo-spatial parameters were also calculated. Self-reported pain/function and activity level were assessed via the Harris Hip Score (HHS) and UCLA Activity Scale (UCLA). Participants wore a StepWatch Activity Monitor in their community and the Intensity/Duration of ambulatory bouts were analyzed. Spearman correlation coefficients were run to assess the following relationships: in-lab walking measures, self-reported function/activity vs.community ambulatory activity. RESULTS: There were no statistically significant correlations between HHS, UCLA or temporospatial parameters with ambulatory activity (p>0.05). Worsening gait deviations (GDI/GPS scores) correlated with daily total ambulatory time (ρ=0.284/-0.284, p<0.05), time spent in Short duration ambulatory bouts (ρ=-0.321/0.321, p<0.05) and the amount of time in Long duration ambulatory bouts (ρ=0.366/-0.366, p<0.05). The amount of time spent in Easy intensity/Short duration and Easy intensity/Long duration ambulatory bouts did have a weak correlation with the GDI and GPS (p<0.05). CONCLUSIONS: In HPS patients after long-term follow up, ambulatory activity in the community did not correlate with patient reported outcomes but there was a weak correlation with the presence of gait deviations. Incorporating wearable sensors to assess community ambulatory bout intensity/duration, provides additional quantifiable measures into the overall function of patients following HPS.

How do we know whether treatment has failed? Paradoxical outcomes in counseling with young people.

Background: In both routine practice contexts and research studies, evidence from standardized self-report symptom measures, administered pre- and post-treatment, is predominantly used to determine whether psychotherapy has been successful. Understanding the nature of unsuccessful psychotherapy requires an ability to evaluate the credibility of outcome data generated by such techniques. An important body of research has identified discrepancies between outcomes assessed through symptom measures and those obtained from other sources. However, not enough is known about the extent to which such paradoxical outcomes exist. Objective: This study analyzes the relationship between outcomes, as assessed by a standardized self-report measure, and as assessed by ratings of young people's descriptions of change at post-counseling interviews. Methods: Participants were 50 young people (13-16 years old) who had taken part in a trial of up to 10 weeks of school-based humanistic counseling. Our primary standardized measure was the Young Person's CORE (YP-CORE). To assess young people's experiences of counseling change, three independent raters scrutinized transcripts of post-counseling interviews, and scored levels of helpfulness on a 1 (Not at all helpful) to 10 (Extremely helpful) scale. Inter-rater reliabilities were 0.94 (Cronbach's Alpha) and 0.96 (McDonald's Omega). Sensitivity analyses were conducted to explore relationships between helpfulness ratings and other outcome measures, i.e., satisfaction with counseling (ESQ) and the Goal-Based-Outcome Tool (GBO), and process measures, i.e., the Working Alliance Inventory (WAI-S) and the Barret Lennard Relationship Inventory (BLRI). Results: Multilevel analysis indicated that helpfulness ratings were not significantly associated with changes in YP-CORE scores. Analyzed categorically, 38% of those showing reliable improvement on the standardized measure were below the median for self-described helpfulness, and 47% of those not showing reliable change were at or above the median for self-described helpfulness. Sensitivity analyses demonstrated closer correlations between helpfulness ratings and other outcome measures (ESQ and GBO), and between helpfulness ratings and process measures (WAI-S and BLRI). Discussion: Our results raise questions about reliance on symptom change outcome measures for defining treatment success and failure, given their disparity with clients' own descriptions of the helpfulness of therapy. Implications for practice and research are discussed.

The experience of effort in ADHD: a scoping review.

Background: Mental effort plays a critical role in regulating cognition. However, the experience of mental effort may differ for individuals with Attention-Deficit/Hyperactivity Disorder (ADHD), a disorder for which sustained mental effort 'avoidance' or 'dislike' is a criterion in the DSM. We conducted a scoping review to characterize the literature on the experiences of effort in ADHD. Methods: This systematic scoping review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) Extension for Scoping Reviews and Joanna Briggs Methodology. PsycINFO (OVID), PsycINFO (ProQuest) and PubMed were searched for studies published in English before February 14, 2023. Studies must have included an ADHD population or a measure of ADHD symptomatology, in addition to a self-report measure of the experience of effort or the use of an effort preference paradigm. Two researchers reviewed all abstracts, and one researcher reviewed full-text articles. Results: Only 12 studies met the inclusion criteria. Several gaps and inconsistencies in the research were identified in terms of method, definitions of effort, measurements of ADHD, and sample characteristics. Moreover, the pattern of results on the experience of effort was mixed. Conclusion: Despite its diagnostic and conceptual significance, the experience of mental effort in ADHD is not well studied. Critical gaps were identified in the existing literature. A three-facet conceptualization of effort is proposed-specifically, task-elicited effort, volitionally exerted effort, and the affect associated with engaging in effort - to guide future explorations of the experience of effort in ADHD.

[The perception gap on migraine: a survey study of the migraine patients, family members, and physicians].

Migraine is a disease that is difficult to be recognized by those around the patients, even though it causes significant hindrances. In this study, we conducted an exploratory comparison of the perceptions on migraine among patients, family members living with them, and physicians treating migraine patients. Patients and family members shared a common understanding on the pain of migraine, and hoped to spend more/better time together as a family. However, although family members felt compassion for the patients, lack of understanding by and patients' concern for the surroundings led to feelings of resignation and endurance on the side of patients. Regarding physicians' medical care, our results suggested the importance to understand the wishes and obstacles of each patient and to propose treatment accordingly. In order to reduce the burden of migraine, it is necessary to create an environment and raise awareness that allows people around the patients to understand and support the pain and hopes that each patient feels.

Agreement of medical record abstraction and self-report of breast cancer treatment with an extended recall window.

BACKGROUND: Medical record abstraction (MRA) and self-report questionnaires are two methods frequently used to ascertain cancer treatment information. Prior studies have shown excellent agreement between MRA and self-report, but it is unknown how a recall window longer than 3 years may affect this agreement. METHODS: The Women's Environmental Cancer and Radiation Epidemiology (WECARE) Study is a multicenter, population-based case-control study of controls with unilateral breast cancer individually matched to cases with contralateral breast cancer. Participants who were diagnosed with a first primary breast cancer from 1985 to 2008 before the age of 55 years completed a questionnaire that included questions on treatment. First primary breast cancer treatment information was abstracted from the medical record from radiation oncology clinic notes for radiation treatment and from systemic adjuvant treatment reports for hormone therapy and chemotherapy. Agreement between MRA and self-reported treatment was assessed with the kappa statistic and corresponding 95% confidence intervals (CIs). RESULTS: A total of 2808 participants with MRA and self-reported chemotherapy treatment information, 2733 participants with MRA and self-reported hormone therapy information, and 2905 participants with MRA and self-reported radiation treatment information were identified. The median recall window was 12.5 years (range, 2.8-22.2 years). MRA and self-reported treatment agreement was excellent across treatment modalities (kappachemo, 98.5; 95% CI, 97.9-99.2; kappahorm, 87.7; 95% CI, 85.9-89.5; kapparad, 97.9; 95% CI, 97.0-98.7). There was no heterogeneity across recall windows (pchemo = .46; phorm = .40; prad = .61). CONCLUSIONS: Agreement between self-reported and MRA primary breast cancer treatment modality information was excellent for young women diagnosed with breast cancer and was maintained even among women whose recall window was more than 20 years after diagnosis.

Validation of the self-reported diagnosis of diabetes mellitus, hypercholesterolemia, and hypertension in Iran; STEPS 2016.

Purpose: As a part of STEPwise approach to risk factor Surveillance (STEPS) study, our aim was to evaluate the validity of the self-reported diagnosis of diabetes (DM), hypertension (HTN), and hypercholesterolemia (Hyper-Chol) in the Iranian population. Methods: Using systematic proportional to size cluster sampling, 27,232 participants were included in our study. We calculated the sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) to assess the validity of self-reported diagnoses. Furthermore, logistic regression was employed to examine the relationship between the validity of self-reported diagnoses and sociodemographic and lifestyle factors. All analyses were performed using STATA version 14. Results: The PPV for self-report of DM, HTN, and Hyper-Chol were estimated to be 69%, 74% and 80%, and NPV measured up to 95%, 84%, and 50%, respectively. Positive/negative self-reports were more accurate among older (younger) individuals. Age had a negative correlation with the validity of self-reported Hyper-Chol but a positive correlation with the validity of self-reported DM and hypertension HTN. Additionally, an increase in BMI was associated with an increase/decrease in PPV and a decrease/increase in NPV across all diseases. Conclusion: Self-report studies hold value in situations where direct in-person interaction is not feasible, either due to prohibitive costs or restrictions imposed by infectious diseases (COVID-19). Self-report surveys are valuable tools in studying the epidemiology of diseases; however, the type of the disease, the study purpose, either finding sick people or healthy people, the age subgroups, and socioeconomic status should be taken into consideration.

Secular trends and determinants of ad libitum energy intake measured in a research setting from 1999-2020.

Introduction: Historically, secular and seasonal trend analyses have been examined using self-report measures of intake. Rarely are objective measures and known determinants of dietary intake used in these analyses. Our objective was to quantify the seasonal and secular differences in an objective ad libitum intake paradigm while considering the contribution of determinants, such as fat-free mass (FFM) index and spontaneous physical activity (SPA) limited to the restricted space of a whole-room calorimeter. Methods: For this study, recruitment of N = 292 healthy, diabetes free, adults occurred from 1999 to 2020. Assessment during their 10-day stay included body composition (by DXA), SPA (by an approximately 24-h stay in whole-room calorimetry), and ad libitum intake (by a vending machine for 3 days). This secondary analysis used general linear models (GLM) to investigate secular and seasonal differences while adjusting for sex, age, FFM index, FM (fat mass) index, SPA, and race/ethnicity. Results: FFM index and SPA were positively associated with all intake measures (p < 0.05). In all adjusted seasonal models, season did not affect intake. Adjusted secular trends models (kcals/year) demonstrated a decrease in total kcals (ß = -55), intake as percent weight maintaining energy needs (ß = -2), protein kcals (ß = -10), fat kcals (ß = -27), and carbohydrates kcals (ß = -22) (all p < 0.05). After further adjustment for SPA, significance remained in all intake measures (p < 0.05). Secular trends in body composition revealed no changes in weight, BMI, and percent body fat (all p > 0.20). Discussion: Our results indicate that over time, ad libitum intake decreased in this controlled research setting and remained significant even after accounting for positive determinants of intake. A significant ad libitum decrease, coupled with no change in body composition, may highlight a participant bias toward calorie restriction in a controlled setting over time and deserves further investigation.