Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy.

Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health-related quality of life (HRQL). The Neuro-QoL measurement initiative is an NINDS-funded system of patient-reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-method and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty-one people diagnosed with epilepsy participated, the majority of which were male (62%) and Caucasian (95%), with a mean age of 47.3 (SD=16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. The Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol, and Positive Affect and Well-Being. Neurology Quality-of-Life short forms demonstrated adequate reliability (internal consistency range=.86-.96; test-retest range=.57-.89). Pearson correlations (p<.01) between Neuro-QoL forms of emotional distress (anxiety, depression, stigma) and the QOLIE-31 Emotional Well-Being subscale were in the moderate-to-strong range (r's=.66, .71 and .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r's=.59, .74 and .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r's=.58 and .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function subscale (r's=.60 and .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate-to-strong correlations with the QOLIE-31 Cognition subscale (r's=.65 and .75, respectively) and moderate relations with the Liverpool Adverse Events Profile (r's=.51 and .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r=-.65), Liverpool Adverse Events Profile (r=.69), and the Liverpool Seizure Severity Scale (r=.50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5-7months, including Fatigue, Sleep Disturbance, Depression, Positive Affect and Well-Being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test-retest reliability, convergent validity, and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy.

The Gender Gap: Who Is (and Is Not) Included on Graduate-Level Syllabi in Social/Personality Psychology.

We contacted a random sample of social/personality psychologists in the United States and asked for copies of their graduate syllabi. We coded more than 3,400 papers referenced on these syllabi for gender of authors as well as other characteristics. Less than 30% of the papers referenced on these syllabi were written by female first authors, with no evidence of a trend toward greater inclusion of papers published by female first authors since the 1980s. The difference in inclusion rates of female first-authored papers could not be explained by a preference for including classic over contemporary papers in syllabi (there was evidence of a recency bias instead) or the relative availability of female first-authored papers in the published literature. Implications are discussed.

Moral and religious convictions: Are they the same or different things?

People often assume that moral and religious convictions are functionally the same thing. But are they? We report on 19 studies (N = 12,284) that tested whether people's perceptions that their attitudes are reflections of their moral and religious convictions across 30 different issues were functionally the same (the equivalence hypothesis) or different constructs (the distinct constructs hypothesis), and whether the relationship between these constructs was conditional on political orientation (the political asymmetry hypothesis). Seven of these studies (N = 5,561, and 22 issues) also had data that allowed us to test whether moral and religious conviction are only closely related for those who are more rather than less religious (the secularization hypothesis), and a narrower form of the political asymmetry and secularization hypotheses, that is, that people's moral and religious convictions may be tightly connected constructs only for religious conservatives. Meta-analytic tests of each of these hypotheses yielded weak support for the secularization hypothesis, no support for the equivalence or political asymmetry hypotheses, and the strongest support for the distinct constructs hypothesis.

The state of social and personality science: Rotten to the core, not so bad, getting better, or getting worse?

The scientific quality of social and personality psychology has been debated at great length in recent years. Despite research on the prevalence of Questionable Research Practices (QRPs) and the replicability of particular findings, the impact of the current discussion on research practices is unknown. The current studies examine whether and how practices have changed, if at all, over the last 10 years. In Study 1, we surveyed 1,166 social and personality psychologists about how the current debate has affected their perceptions of their own and the field's research practices. In Study 2, we coded the research practices and critical test statistics from social and personality psychology articles published in 2003-2004 and 2013-2014. Together, these studies suggest that (a) perceptions of the current state of the field are more pessimistic than optimistic; (b) the discussion has increased researchers' intentions to avoid QRPs and adopt proposed best practices, (c) the estimated replicability of research published in 2003-2004 may not be as bad as many feared, and (d) research published in 2013-2014 shows some improvement over research published in 2003-2004, a result that suggests the field is evolving in a positive direction. (PsycINFO Database Record

Identifying Motor, Emotional-Behavioral, and Cognitive Deficits that Comprise the Triad of HD Symptoms from Patient, Caregiver, and Provider Perspectives.

BACKGROUND: The objective of this study was to identify important attributes associated with the triad of symptoms (cognition, emotional-behavioral, and motor) of Huntington's disease (HD) from patient, caregiver, and medical provider perspectives to facilitate development of a new disease-specific, health-related quality of life (HRQOL) instrument. METHODS: We conducted a targeted literature review of HD and HRQOL instruments, expert surveys, and patient and caregiver phone-based interviews to extract information on the symptoms and issues most relevant to the HD symptom triad (HD triad). The data collected from these sources were used to generate themes and subdomains and to develop an integrated schema that highlights the key dimensions of the triad. RESULTS: THE SEARCH IDENTIFIED THE FOLLOWING AREAS: emotional functioning/behavioral changes (e.g., positive emotions, sadness/depression); cognitive functioning (e.g., memory/learning, attention/comprehension); physical functioning (e.g., motor functioning, medication); social functioning (e.g., leisure, interpersonal relationships); end-of-life concerns/planning; and gene testing. Fifteen individuals diagnosed with HD and 16 HD caregivers, recruited from several Huntington's Disease Society of America support group networks, completed phone interviews. Nineteen US medical providers who specialize in HD completed the online survey. Twenty-six subdomains of the HD symptom triad (seven cognition, 12 emotional-behavioral, and seven motor) emerged relatively consistently across patient, caregiver, and provider samples. These included movements/chorea, memory impairment, depression, and anxiety. DISCUSSION: Based on an integrated, mixed-methods approach, important HD triad symptom were identified and organized into a guiding schema. These patient-, caregiver-, and provider-triangulated data served as the basis for development of a HD-specific HRQOL instrument, the HD-PRO-TRIAD™.

HD-PRO-TRIAD™ Validation: A Patient-reported Instrument for the Symptom Triad of Huntington's Disease.

BACKGROUND: Few valid, disease-specific measures of health-related quality of life (HRQOL) capture the spectrum of symptoms associated with Huntington's disease (HD). The HD-PRO-TRIAD™ is a new, HD-specific, patient-reported outcome (PRO) instrument of the HD symptom triad (cognitive decline, emotional/behavioral dyscontrol, and motor dysfunction) designed for clinical research and practice. The objective was to validate the HD-PRO-TRIAD™ through a cross-sectional sample of individuals with HD and caregivers. METHODS: Development of the HD-PRO-TRIAD™ has been described elsewhere. A total of 132 individuals with HD and 40 HD caregivers, comprising 29 dyads, participated in the cross-sectional psychometric validation of this instrument. Participants provided responses to the HD-PRO-TRIAD™ and other HRQOL and disease severity instruments (EuroQOL 5D, Short Form 12, Neuro-QOL Item Banks, PROMIS Global Health, and self-reported Unified Huntington's Disease Rating Scale Total Functional Capacity and Independence Scales). Internal consistency, construct validity, and patient-caregiver proxy consistency were evaluated. RESULTS: Internal consistency of the three domains and overall HD-PRO-TRIAD™ instrument was supported by Cronbach's alpha values ≥0.94. Construct validity was supported by significant correlations between HD-PRO-TRIAD™ domain scores and other measures of the same domains (e.g., significant positive correlations between HD-PRO-TRIAD™ Anxiety with Neuro-QOL Anxiety), as well as slightly weaker but still strong correlations with other HRQOL instruments (e.g., HD-PRO-TRIAD™ Anxiety and UHDRS Independence; all p<0.01). Consistency between patient self-report and caregiver proxy report was supported by an intra-class correlation coefficient ≥0.92 for all three domains and the overall instrument. DISCUSSION: These data indicate that HD-PRO-TRIAD™ is a reliable and valid HRQOL instrument that captures the typical triad of HD symptoms.