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.

Two models of mind blanking.

Mind blanking is a mental state in which attention does not bring any perceptual input into conscious awareness. As this state is still largely unexplored, we suggest that a comprehensive understanding of mind blanking can be achieved through a multifaceted approach combining self-assessment methods, neuroimaging and neuromodulation. In this article, we explain how electroencephalography and transcranial magnetic stimulation could be combined to help determine whether mind blanking is associated with a lack of mental content or a lack of linguistically or conceptually determinable mental content. We also question whether mind blanking occurs spontaneously or intentionally and whether these two forms are instantiated by the same or different neural correlates.

The assessment of emotion reactivity: The Italian validation of the Perth Emotional Reactivity Scale-Short Form (PERS-S).

Emotion reactivity refers to the activation, intensity and duration of emotional responses to internal or external stimuli. It can be differentiated from emotion regulation since the former is the very first response to an emotional trigger, and the latter can be defined as a tool for maintaining one's arousal in a window of tolerance. Since, to date, there are no Italian self-report measures able to evaluate individuals' emotional reactivity, this study aimed to contribute to the Italian validation of the Perth Emotional Reactivity Scale-Short Form (PERS-S). The PERS-S is an 18-item self-report measure answered on a 5-point Likert scale that generates six subscale scores and two composite scores, with higher scores indicating higher levels of reactivity. Data from 768 individuals showed that the PERS-S had good to excellent goodness of fit. The internal consistency was high, with an overall reliability coefficient (Cronbach's α) of .87 and .86 for the negative and positive general scales, respectively. The PERS-S also demonstrated appropriate convergent validity, showing significant correlations with conceptually related measures, and acceptable divergent validity, showing minimal correlations with unrelated constructs. Finally, we evaluated the Test-Retest Reliability by administering the PERS-S to the same sample twice, with a 2-week interval. The significant correlations between the two PERS-S administrations suggest temporal stability. The Italian version of the PERS-S will enrich the repertoire of self-report measures for investigating the development and risk factors of mental health disorders and may have practical applications in clinical settings.

Measures of Subjective Memory for People with Epilepsy: A Systematic Review of Measurement Properties.

People with epilepsy frequently express concern about the burden of memory problems in their everyday lives. Self-report memory questionnaires may provide valuable insight into individuals' perceptions of their everyday memory performance and changes over time. Yet, despite their potential utility, the measurement properties of self-report memory questionnaires have not been evaluated in epilepsy. This systematic review aimed to provide a critical appraisal of the measurement properties of self-report memory questionnaires for adults with epilepsy. Following protocol registration (PROSPERO CRD42020210967), a systematic search of PubMed, EMBASE, Web of Science, CINAHL, and PsychInfo from database inception until 27 May 2021 was conducted. Eligible studies were published in English-language peer-reviewed journals, recruited adults with epilepsy, and reported on the development or evaluation of the measurement properties of a self-report memory questionnaire. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology was used to evaluate each study of a measurement property, and results were qualitatively synthesised. In total, 80 articles and one test manual were located containing 153 studies of measurement properties pertinent to 23 self-report memory questionnaires. Overall, no scale could be recommended outright for the evaluation of subjective memory symptoms in adults with epilepsy. This was due to the near absence of dedicated content validation studies relevant to this population and shortcomings in the methodology and scientific reporting of available studies of structural validity. Recommendations to support the advancement and psychometric validation of self-report memory questionnaires for people with epilepsy are provided.

Sleep characteristics and parameters of bone turnover and strength in the adult population: results from the Study of Health in Pomerania-TREND.

Poor sleep quality or sleep deprivation may be related to decreased bone mineral density. We aimed to assess whether associations of sleep characteristics and bone turnover or strength are present in adults from the general population and whether these are independent of common risk factors such as sex, age, and obesity. A total of 1037 participants from the Study of Health in Pomerania-TREND underwent laboratory-based polysomnography and quantitative ultrasound measurements at the heel. Of these participants, 804 completed standardised questionnaires to assess daytime sleepiness, insomnia, and sleep quality. Serum concentrations of two bone turnover markers, intact amino-terminal propeptide of type 1 procollagen (P1NP) and carboxy-terminal telopeptide of type 1 collagen (CTX) were measured. Cross-sectional associations of polysomnography variables (total sleep time, sleep efficiency, time spent wake after sleep onset, oxygen desaturation index, apnea-hypopnea index, and obstructive sleep apnea [OSA]), as well as sleep questionnaire scores with the bone turnover markers and the ultrasound-based stiffness index were assessed in linear regression models. In adjusted models, higher insomnia scores and lower sleep quality scores were related to a higher bone turnover in women but not in men. However, associations between polysomnography variables or questionnaire scores and the stiffness index were absent. Our study provides limited evidence for relationships between sleep characteristics and bone turnover and strength independent of common risk factors for OSA and osteoporosis. Nevertheless, women reporting poor sleep or insomnia in combination with risk factors for osteoporosis might benefit from an evaluation of bone health.

Network analysis of sleep bruxism in the EPISONO adult general population.

Sleep bruxism (SB) has been associated with biological and psychosocial factors. The assessment of SB includes self-report, clinical evaluation, and polysomnography. This study aimed to investigate the associations of self-reported SB with other sleep disorders and demographic, psychological, and lifestyle factors in the adult general population, and to investigate whether self-reported SB and polysomnographically (PSG) confirmed SB provide similar outcomes in terms of their associated factors. We recruited 915 adults from the general population in Sao Paulo, Brazil. All participants underwent a one-night PSG recording and answered questions about sex, age, BMI, insomnia, OSA risk, anxiety, depression, average caffeine consumption, smoking frequency, and alcohol consumption frequency. We investigated the link between SB and the other variables in univariate, multivariate, and network models, and we repeated each model once with self-reported SB and once with PSG-confirmed SB. Self-reported SB was only significantly associated with sex (p = 0.042), anxiety (p = 0.002), and depression (p = 0.03) in the univariate analysis, and was associated with insomnia in the univariate (p < 0.001) and multivariate (ß = 1.054, 95%CI 1.018-1.092, p = 0.003) analyses. Network analysis showed that self-reported SB had a direct positive edge to insomnia, while PSG-confirmed SB was not significantly associated with any of the other variables. Thus, sleep bruxism was positively associated with insomnia only when self-reported, while PSG-confirmed SB was not associated with any of the included factors.

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.

Reliability and validity of rapid assessment tools for measuring 24-hour movement behaviours in children aged 0-5 years: the Movement Behaviour Questionnaire Baby (MBQ-B) and child (MBQ-C).

BACKGROUND: The development of validated "fit-for-purpose" rapid assessment tools to measure 24-hour movement behaviours in children aged 0-5 years is a research priority. This study evaluated the test-retest reliability and concurrent validity of the open-ended and closed-ended versions of the Movement Behaviour Questionnaire for baby (MBQ-B) and child (MBQ-C). METHODS: 300 parent-child dyads completed the 10-day study protocol (MBQ-B: N = 85; MBQ-C: N = 215). To assess validity, children wore an accelerometer on the non-dominant wrist (ActiGraph GT3X+) for 7 days and parents completed 2 × 24-hour time use diaries (TUDs) recording screen time and sleep on two separate days. For babies (i.e., not yet walking), parents completed 2 × 24-hour TUDs recording tummy time, active play, restrained time, screen time, and sleep on days 2 and 5 of the 7-day monitoring period. To assess test-retest reliability, parents were randomised to complete either the open- or closed-ended versions of the MBQ on day 7 and on day 10. Test-retest intraclass correlation coefficients (ICC's) were calculated using generalized linear mixed models and validity was assessed via Spearman correlations. RESULTS: Test-retest reliability for the MBQ-B was good to excellent with ICC's ranging from 0.80 to 0.94 and 0.71-0.93 for the open- and closed-ended versions, respectively. For both versions, significant positive correlations were observed between 24-hour diary and MBQ-B reported tummy time, active play, restrained time, screen time, and sleep (rho = 0.39-0.87). Test-retest reliability for the MBQ-C was moderate to excellent with ICC's ranging from 0.68 to 0.98 and 0.44-0.97 for the open- and closed-ended versions, respectively. For both the open- and closed-ended versions, significant positive correlations were observed between 24-hour diary and MBQ-C reported screen time and sleep (rho = 0.44-0.86); and between MBQ-C reported and device-measured time in total activity and energetic play (rho = 0.27-0.42). CONCLUSIONS: The MBQ-B and MBQ-C are valid and reliable rapid assessment tools for assessing 24-hour movement behaviours in infants, toddlers, and pre-schoolers. Both the open- and closed-ended versions of the MBQ are suitable for research conducted for policy and practice purposes, including the evaluation of scaled-up early obesity prevention programs.

Inconsistencies in self-reported diabetes in a large panel study: the Survey of Health, Ageing and Retirement in Europe (SHARE).

BACKGROUND: The validity of self-reported chronic conditions has been assessed by comparing them with medical records or register data in several studies. However, the reliability of self-reports of chronic diseases has less often been examined. Our aim was to assess the proportion and determinants of inconsistent self-reports of diabetes in a long panel study. METHODS: SHARE (Survey of Health, Ageing and Retirement in Europe) includes 140,000 persons aged ≥ 50 years from 28 European countries and Israel. We used data from waves 1 to 7 (except wave 3) collected between 2004 and 2017. Diabetes was assessed by self-report. An inconsistent report for diabetes was defined as reporting the condition in one wave, but denying it in at least one later wave. The analysis data set included 13,179 persons who reported diabetes, and answered the question about diabetes in at least one later wave. Log-binomial regression models were fitted to estimate crude and adjusted relative risks (RR) with 95% confidence intervals (CI) for the associations between various exposure variables and inconsistent report of diabetes. RESULTS: The proportion of persons with inconsistent self-reports of diabetes was 33.0% (95% CI: 32.2%-33.8%). Inconsistencies occurred less often in persons taking antidiabetic drugs (RR = 0.53 (0.53-0.56)), persons with BMI ≥ 35 kg/m2 versus BMI < 25 kg/m2 (RR = 0.70, (0.64-0.77)), and poor versus excellent subjective health (RR = 0.87 (0.75-1.01)). Inconsistencies occurred more often in older persons (RR = 1.15 (1.12-1.18) per 10 years increase of age), and persons not reporting their age at diabetes onset (RR = 1.38 (1.31-1.45)). CONCLUSION: In SHARE, inconsistent self-report of diabetes is frequent. Consistent reports are more likely for persons whose characteristics make diabetes more salient, like intake of antidiabetic medication, obesity, and poor subjective health. However, lack of attention in answering the questions, and poor wording of the items may also play a role.

Examining Concordance Between Self-Report and Biomedical HIV Viral Load Data: A Scoping Review.

Assessment of HIV viral load based on laboratory results is the gold standard in HIV care and research. However, blood assay or accessing medical records is not always possible due to research or service contexts and constraints. Self-report of viral load test results expands data resources, is a convenient method of collecting data in both research and service settings, and is useful for HIV surveillance. The purpose of this scoping review was to identify existing literature on the validity of self-reported viral load data compared to blood assay or medical record review. We found that the existing literature is limited, with varied data collection methods, self-report measures, and study designs, as well as predictors of accuracy. Concordance between self-reported viral load and biomedical data varied across studies but appeared to be more consistent among samples recruited from clinical populations that reported engagement in HIV care. While it is difficult to draw definitive conclusions about the validity of self-reported viral load across existing studies, there is a need for a standardized measure and method of collection that can be utilized across diverse populations living with HIV.

RESUMEN: La evaluación de la carga viral del VIH basada en resultados de laboratorio es el patrón-oro en la atención e investigación del VIH. Sin embargo, el análisis de sangre o el acceso a los registros médicos no siempre es posible debido a los contextos y limitaciones de la investigación o los servicios. El autoinforme de los resultados de las pruebas de carga viral aumenta los recursos de datos, es un método conveniente de recopilación de datos tanto en contextos de investigación como de servicios, y es útil para la vigilancia de VIH. El propósito de esta revisión de alcance fue identificar la literatura existente sobre la validez de los datos de carga viral autoinformados en comparación con análisis de sangre o revisión de registros médicos. Encontramos que la literatura existente es limitada, con variados métodos de recopilación de datos, medidas de autoinforme y diseños de estudio, así como predictores de exactitud. La concordancia entre la carga viral autoinformada y los datos biomédicos varió entre los estudios, pero pareció ser más consistente entre las muestras reclutadas de poblaciones clínicas que indicaron participación en la atención del VIH. Aunque es difícil extraer conclusiones definitivas sobre la validez de la carga viral autoinformada en los estudios existentes, existe la necesidad de una medida y un método de recopilación estandarizados que puedan utilizarse en diversas poblaciones que viven con el VIH.

Overreporting of adherence to hepatitis C direct-acting antiviral therapy and sustained virologic response among people who inject drugs in the HERO study.

BACKGROUND: Self-reported adherence to direct-acting antivirals (DAAs) to treat hepatitis C virus (HCV) among persons who inject drugs (PWID) is often an overreport of objectively measured adherence. The association of such overreporting with sustained virologic response (SVR) is understudied. This study among PWID aimed to determine a threshold of overreporting adherence that optimally predicts lower SVR rates, and to explore correlates of the optimal overreporting threshold. METHODS: This study analyzed per-protocol data of participants with adherence data (N = 493) from the HERO (Hepatitis C Real Options) study. Self-reported and objective adherence to a 12-week DAA regimen were measured using visual analogue scales and electronic blister packs, respectively. The difference (Δ) between self-reported and objectively measured adherence was calculated. We used the Youden index based on receiver operating characteristic (ROC) curve analysis to identify an optimal threshold of overreporting for predicting lower SVR rates. Factors associated with the optimal threshold of overreporting were identified by comparing baseline characteristics between participants at/above versus those below the threshold. RESULTS: The self-reported, objective, and Δ adherence averages were 95.1% (SD = 8.9), 75.9% (SD = 16.3), and 19.2% (SD = 15.2), respectively. The ≥ 25% overreporting threshold was determined to be optimal. The SVR rate was lower for ≥ 25% vs. < 25% overreporting (86.7% vs. 95.8%, p <.001). The factors associated with ≥ 25% Δ adherence were unemployment; higher number of days and times/day of injecting drugs; higher proportion of positive urine drug screening for amphetamine, methamphetamine, and oxycodone, and negative urine screening for THC (tetrahydrocannabinol)/cannabis. CONCLUSIONS: Self-reported DAA adherence was significantly greater than objectively measured adherence among PWID by 19.2%. Having ≥ 25% overreported adherence was associated with optimal prediction of lower SVR rates. PWID with risk factors for high overreporting may need to be more intensively managed to promote actual adherence.

Exploring older people's understanding of the QOL-ACC, a new preference-based quality-of-life measure, for quality assessment and economic evaluation in aged care: the impact of cognitive impairment and dementia.

BACKGROUND: Quality-of-life is an essential outcome for quality assessment and economic evaluation in health and social care. The-Quality-of-Life - Aged Care Consumers (QOL-ACC) is a new preference-based quality-of-life measure, psychometrically validated with older people in aged care. More evidence is needed to inform the self-report reliability of the QOL-ACC in older people with varying levels of cognitive impairment and dementia. METHODS: A think-aloud protocol was developed and applied with older residents. The Mini Mental State Examination (MMSE) was applied to assign participants to no cognitive impairment (NCI - MMSE score ≥ 27) and cognitive impairment (MMCI - MMSE score < 27) subgroups. Three independent raters utilised a Tourangeau survey response model-based framework to identify response issues. Data were compared across cognition subgroups and synthesized using a 'traffic light' grading to classify frequency and type of response issues. Gradings were utilised to assess self-report reliability according to different levels of cognitive impairment. RESULTS: Qualitative data from 44 participants (NCI = 20, MMCI = 24) were included for analysis. Response issues were more evident in the cognitive impairment subgroup than the no cognitive impairment subgroup. All participants who received a 'red' grade had an MMSE score of < 20 and 66% of 'amber' grades occurred in the cognitive impairment subgroup. CONCLUSIONS: The QOL-ACC is able to be completed reliably by older residents with an MMSE score > 17. Future research is needed to assess the generalisability of these findings to other preference-based quality of life instruments and for older people in other care settings including health systems.

Inconclusiveness of psychometric testing of medication adherence questionnaires.

PURPOSE: To propose a paradigm change for the validation procedures of medication adherence questionnaires. METHODS: A total of 121 validation procedures of unique questionnaires for medication adherence were analyzed. RESULTS: "Construct validity" and "internal consistency" were most often assessed, and test results varied largely. A more in-depth analysis indicated that the assessment of medication non-adherence included distinct but related constructs, such as the extent to which doses are missed, and the attempt to identify different facets of medication-taking behavior. Consequently, each construct requires a different measurement approach with different psychometric tests for establishing its validity and reliability. CONCLUSION: Results show that assessing the validity and reliability of adherence questionnaires with standard procedures including statistical tests is inconclusive. Refinement of the constructs of non-adherence is needed in pharmacy and medical practice. We suggest a distinction between the (i) extent of missed doses over the past 2 weeks, (ii) modifiable reasons for non-adherence behavior, and (iii) unmodifiable factors of non-adherence. Validation procedures and corresponding statistical methods should be selected according to the specific single constructs.

Can personality disorder be accurately assessed in older age? A differential item functioning analysis of ICD-11 inventories.

OBJECTIVES: The contested categorical personality disorder (PD) criteria are not well suited to inform PD diagnoses in older adults. Yet, the classification of PDs is undergoing a critical transition phase with a paradigm shift to a dimensional approach for diagnosing PDs. No special attention was given to the expression of PDs in older age when the dimensional ICD-11 model was developed. Given that PDs are highly prevalent in older adults, there is an urgent need to examine if ICD-11 related instruments are able to adequately assess for PDs in older adults. METHODS: The age-neutrality of ICD-11 measures was examined in a sample of 208 Dutch community-dwelling adults (N = 208, M age = 54.96, SD = 21.65), matched on sex into 104 younger (age range 18-64) and 104 older (age range 65-93) adults. An instrument is considered not to be age-neutral if a collective large level of differential item functioning (DIF) exists in a group of items of an instrument (i.e., 25% or more with DIF). We therefore set out to detect possible DIF in the following ICD-11 self-report measures: the Standardized Assessment of Severity of Personality Disorder (SASPD), the Personality Inventory for ICD-11 (PiCD), and the Borderline Pattern Scale (BPS). RESULTS: DIF analyses using a non-parametric odds ratio approach demonstrated that SASPD, PiCD, and BPS were age-neutral with less than 25% of items showing DIF. Yet, impact of DIF at scale level, examined by way of differential test functioning (DTF), indicated a DTF effect on the SASPD total score. CONCLUSIONS: These results of age-neutrality of the PiCD and BPS are promising for measuring ICD-11 traits and the borderline pattern. Yet, the age-neutral measurement of PD severity requires further research. With a rapidly aging population, its accurate assessment across the entire adult life span, including older age, is a prerequisite for an adequate detection of PDs.

Subjective and objective measures of cognitive function are correlated in persons with Post-COVID-19 Condition: a secondary analysis of a Randomized Controlled Trial.

BACKGROUND: It remains unclear whether subjective and objective measures of cognitive function in Post COVID-19 Condition (PCC) are correlated. The extent of correlation has mechanistic and clinical implications. METHODS: This post-hoc analysis of a randomized, double-blind, placebo-controlled clinical trial contains baseline data of subjective and objective measures of cognition in a rigorously characterized cohort living with PCC. Herein, we evaluated the association between subjective and objective condition function, as measured by the Perceived Deficits Questionnaire, 20-item (PDQ-20) and the Digit Symbol Substitution Test (DSST) and Trails Making Test (TMT)-A/B, respectively. RESULTS: A total of 152 participants comprised the baseline sample. Due to missing data, our statistical analyses included 150 for self-reported PDQ-20, 147 individuals for combined DSST-measured cognitive function (composite z-score of the Pen/Paper plus Online CogState Version, NcombinedDSST), 71 for in-person DSST-measured cognitive function (Pen/Paper Version), 70 for TMT-A-measured cognitive function, and 70 for TMT-B-measured cognitive function. After adjusting for age, sex, and education, PDQ-20 was significantly correlated with pen-and-paper DSST (ß = -0.003, p = 0.002) and TMT-B (ß = 0.003, p = 0.008) scores, but not with TMT-A scores (ß = -0.001, p = 0.751). CONCLUSIONS: Overall, a statistically significant correlation was observed between subjective and objective cognitive functions. Clinicians providing care for individuals with PCC who have subjective cognitive function complaints may consider taking a measurement-based approach to cognition at the point of care that focuses exclusively on patient-reported measures.

Adverse Menstrual Events Reported After and Before (or Without) COVID-19 Vaccination: A Systematic Review and Meta-Analysis of Comparative Observational Studies.

BACKGROUND: Reports of adverse menstrual events emerged during the COVID-19 vaccination campaign in multiple countries. This raised the question whether these reports were caused by the vaccines. The aim of this systematic review was to evaluate comparative studies on this topic (registered at PROSPERO [CRD42022324973]). METHODS: We included observational studies such as cohort studies and surveys comparing the response to self-reported questionnaires between post- versus pre-vaccination data. PubMed and Cochrane Library searches were conducted on 1 September 2023. The primary outcome was the incidence of any prespecified adverse menstrual event, and the outcome measure was the risk ratio. The meta-analysis was conducted by using the Mantel-Haenszel method and the random effects model. We summarized the results on risk factors as well as key findings of the studies included. RESULTS: We retrieved 161 references from electronic databases and additional sources such as references lists. Of those, we considered 21 comparative observational studies. The meta-analysis of any adverse menstrual adverse event reported in 12 studies resulted in a pooled estimate (risk ratio 1.13; 95% CI, 0.96-1.31) that did not favor any group. The analysis was constrained by considerable clinical and statistical heterogeneity. Risk factors for self-reported menstrual changes included a history of COVID-19 infection, the concern about COVID-19 vaccines, smoking, previous cycle irregularities, depression, and stress, and other issues. CONCLUSIONS: The risk ratio did not favor any group and heterogeneity was prevalent among the studies. Most studies suggested that the reported changes were temporary, minor, and nonserious.

Measurement invariance of the PROMIS emotional distress and subjective well-being domains among autistic and General Population adolescents.

PURPOSE: Quality of life (QoL) is identified as a clinical and research priority by the autistic community. Researchers have the responsibility to ensure that instruments used to measure QoL do so reliably and accurately among autistic participants. METHODS: Our study evaluated measurement invariance of Emotional Distress (Depression, Anxiety, Anger, Psychological Stress) and Subjective Well-Being (Life Satisfaction, Positive Affect, and Meaning & Purpose) scales of the Patient-Reported Outcomes Measurement Information System (PROMIS) among groups of autistic (N=140, n per scale=132-140) and general population (N=1,224, n per scale=406-411) teenagers (14-17 years). These scales were included in the PROMIS Autism Battery-Lifespan, which uses PROMIS scales to measure QoL domains most relevant for autistic people. RESULTS: Multi-group confirmatory factor analyses using permutation tests demonstrated that Depression and Positive Affect scales exhibited scalar invariance between groups, indicating that scores can be meaningfully compared across autistic and general population teens. Anger and Psychological Stress scales demonstrated metric invariance between groups, indicating that these scales measure the same latent trait in both groups, but group comparisons are not supported. CONCLUSION: We provide guidance as to how these scales can be used in psychometrically supported ways to capture constructs relevant for understanding QoL among autistic teens.

Quality of life is an important outcome for autistic people and their families. However, many quality of life scales have not been tested to make sure they accurately measure quality of life among autistic people. It is important to make sure that quality of life measures works similarly among the autistic population. The goal of our study is to test whether scales on a common quality of life measure ­ the Patient-Reported Outcomes Measurement Information System (PROMIS) ­ measures quality of life in the same way between autistic and general population adolescents. We found that some of the PROMIS scales worked the same way for autistic and general population adolescents and others did not. These results help researchers confidently use the PROMIS scales to measure different aspects of quality of life among autistic youth.

Response processes for patients providing quantitative self-report data: a qualitative study.

OBJECTIVE: To identify factors that influence response processes for patients providing quantitative self-report data. Secondly, due to the lack of integrative and explanatory models in this area, to develop a model of patients' response processes that can guide what to look for when considering validity evidence and interpreting scores on individual items. METHODS: Participants (n = 13) were recruited from a specialized substance use disorder treatment clinic and interviewed while responding to items from a clinical feedback system implemented for routine outcome monitoring in that setting. The interview approach was based on cognitive interviewing. Data collection and analysis were inspired by a grounded theory approach. RESULTS: We identified several variables that influenced the participants' response processes. The variables were organized into five categories: context-related variables; item-related variables; response base variables; reasoning strategies; and response selection strategies. We also found that the participants' responses for many items were affected by different aspects of the response process in ways that are relevant to interpretation but not necessarily discernible from the numerical scores alone, and we developed response categories to capture this. CONCLUSION: The findings suggest that patients providing quantitative self-report data encounter conditions in the response process that challenge and influence their ability to convey meaning and accuracy. This results in responses that for many of the items reflect messages important for interpretation and follow-up, even if it does not appear from the numerical scores alone. The proposed model may be a useful tool when developing items, assessing validity, and interpreting responses.

Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks.

PURPOSE: To develop the PROMIS Pediatric Stigma (PPS) and Skin (PPS-Skin) by constructing a common metric for measuring stigma in children with various conditions, while capturing the unique features of each condition. METHODS: Data from 860 children, ages 8-17, with a diagnosis of epilepsy, pNF (neurofibromatosis type 1 associated neurofibroma plexform), MD (muscular dystrophy), cancer, or skin conditions recruited from three projects were analyzed. Children with epilepsy, pNF and MD (sample-1) completed the original 18-item Neuro-QoL Stigma, while children with cancer and skin conditions (e.g., atopic dermatitis, psoriasis, and genetic skin disorders; sample-2) completed a 16-item version and 6 additional skin related items. Exploratory factor analysis (EFA) and confirmatory analysis (CFA) were used to evaluate unidimensionality of 24 stigma items. Differential item functioning (DIF) was used to evaluate measurement equivalence on group, gender, age, and conditions. Item response theory model (IRT) was used to construct the final measure. RESULTS: Sufficient unidimensionality was supported by both EFA and CFA. No items showed significant DIF indicating stable measurement properties across groups of comparison. All items fit the IRT model and were able to be calibrated together to form the PPS which consists of 18 core items. The PPS-Skin (18 cores items + 6 skin items) was developed by calibrating 6 skin items onto the common metric as the PPS. CONCLUSIONS: We used IRT techniques to successfully develop the PPS and the PPS-Skin, which share a common metric and account for unique and common concerns related to chronic conditions.

On Personality Measures and Their Data: A Classification of Measurement Approaches and Their Recommended Uses.

We employ a new approach for classifying methods of personality measurement such as self-judgment, mental ability, and lifespace measures and the data they produce. We divide these measures into two fundamental groups: personal-source data, which arise from the target person's own reports, and external-source data, which derive from the areas surrounding the person. These two broad classes are then further divided according to what they target and the response processes that produce them. We use the model to organize roughly a dozen kinds of data currently employed in the field. With this classification system in hand, we describe how much we might expect two types of measures of the same attribute to converge-and explain why methods often yield somewhat different results. Given that each measurement method has its own strengths and weaknesses, we examine the pros and cons of selecting a given type of measure to assess a specific area of personality.