A Behavioral Test of Accepting Benefits that Cost Others: Associations with Conduct Problems and Callous-Unemotionality

Background: Youth with conduct problems (CP) often make decisions which value self-interest over the interests of others. Self-benefiting behavior despite loss to others is especially common among youth with CP and callous-unemotional traits (CU). Such behavioral tendencies are generally measured using self- or observer-report. We are unaware of attempts to measure this tendency with a behavioral paradigm. Methods/Principal Findings: In our AlAn’s (altruism-antisocial) game a computer program presents subjects with a series of offers in which they will receive money but a planned actual charity donation will be reduced; subjects decide to accept or reject each offer. We tested (1) whether adolescent patients with CP (n = 20) compared with adolescent controls (n = 19) differed on AlAn’s game outcomes, (2) whether youths with CP and CU differed significantly from controls without CP or CU, and (3) whether AlAn’s game outcomes correlated significantly with CP and separately, CU severity. Patients with CP and CU compared with controls without these problems took significantly more money for themselves and left significantly less money in the charity donation; AlAn’s game outcomes were significantly correlated with CU, but not CP. Conclusions/Significance: In the AlAn’s game adolescents with conduct problems and CU traits, compared with controls without CP/CU, are disposed to benefit themselves while costing others even in a novel situation, devoid of peer influences, where anonymity is assured, reciprocity or retribution are impossible, intoxication is absent and when the ‘‘other’ ’ to b

Patient and Physician Preferences for Regimen Attributes for the Treatment of HIV in the United States and Canada

A long-acting injectable (LAI) antiretroviral therapy (ART) regimen is now available as a treatment option for virologically suppressed adults with HIV-1. This study assessed preference for a LAI regimen using an online survey of virally suppressed people living with HIV (PLWH) and physicians treating HIV in the US and Canada. Preference was elicited in a discrete choice experiment (DCE) with three choice options (switch to a LAI regimen, switch to another daily oral ART regimen, or stay on their current daily oral ART regimen) and four treatment attributes. A total of 553 PLWH and 450 physicians completed the survey. From the DCE results, 59% of PLWH were predicted to prefer a LAI over an alternative oral ART or staying on their current oral treatment, and 55–66% of physicians were predicted to recommend LAI for PLWH, depending on the treatment challenge scenario presented. PLWH indicated LAI would remove daily reminders of HIV (75%) and reduce feelings of being stigmatized (68%). A majority of PLWH and physicians preferred a LAI over oral ART to overcome treatment challenges such as daily pill burden and adherence. These benefits of LAI ART along with preferences of PLWH and physicians can help to inform ART choice

Psychometric properties of a custom Patient-Reported Outcomes Measurement Information System (PROMIS) physical function short form and worst stiffness numeric rating scale in tenosynovial giant cell tumors.

PurposeThe purpose of this study was to evaluate the psychometric properties of the PROMIS-Physical Function (PF) and Worst Stiffness Numeric Rating Scale (NRS) among patients with tenosynovial giant cell tumors (TGCT).MethodsMeasurement properties of the customized lower extremity (LE) and upper extremity (UE) PROMIS-PF scales and Worst Stiffness NRS were assessed using data from the Phase 3 ENLIVEN trial (n = 120). Anchor- and distribution-based analyses were utilized to derive a responder threshold for meaningful change over time. The Patient Global Rating of Concept (PGRC)-Physical Functioning and Patient Global Impression of Change (PGIC)-Stiffness served as anchors. Responsiveness and responder threshold analyses were from baseline to week 25.ResultsCronbach's alpha values for internal consistency reliability were 0.93 and 0.91 for the PROMIS-PF LE and UE, respectively. Test-retest reliability intra-class correlation coefficients were > 0.75 for both instruments. Convergent validity for both instruments was supported by moderate to strong correlations (≥0.30) with the Brief Pain Inventory and EQ-5D. Known-groups validity was established between subgroups stratified by pain level (p < 0.05). Responsiveness was supported by evaluating change scores among different levels of change in PGRC-Physical Functioning and PGIC-Stiffness (overall F values < 0.001). Triangulation of responder definition analyses resulted in a threshold of ≥3 for the PROMIS-PF and ≥ 1 for the Worst Stiffness NRS.ConclusionThis study is the first to establish the psychometric properties of patient-reported outcome measures in TGCT. The evidence demonstrates that the PROMIS-PF and Worst Stiffness NRS have good reliability, validity, and responsiveness, and provides guidance for the interpretation of meaningful change

Content validity and ePRO usability of the BPI-sf and “worst pain” item with pleural and peritoneal mesothelioma

Abstract Background The Brief Pain Inventory-short form (BPI-sf) is widely used in self-reported pain assessment, incorporates pain numeric rating scales (NRS) and is commonly utilized in electronic format in clinical trials, however, there is no published information about its usability as an electronic patient-reported outcome (ePRO) measure. The objective of this qualitative study was threefold: 1) to better understand pain experiences among patients with pleural or peritoneal mesothelioma; 2) to assess the interpretability of the instructions, item stem, recall period, and response option of the “worst pain” item of the BPI-sf; and 3) to examine the usability of the TrialMax Touch™ (CRF Health, Inc., Plymouth Meeting, PA) screen-based handheld device and the electronic format of the BPI-sf in a sub-sample of pleural mesothelioma patients. Methods A cross-sectional qualitative study was conducted among participants with pleural and peritoneal mesothelioma recruited from 4 clinical sites in the US. Semi-structured telephone or in-person interviews were conducted consisting of concept elicitation, cognitive interviewing of the 11-item BPI-sf, and in-person interview evaluation of ePRO assessment usability in pleural mesothelioma patients. Results Twenty-one participants recruited from 4 clinical sites in the US were interviewed in-person (n = 9) and by telephone (n = 12); 71% male; mean age 68.7 ± 13.6 years. Pleural and peritoneal patients described pain as ranging from discomfort to intense pain and reported being able to distinguish tumor pain from treatment pain. The BPI-sf “worst pain” item was relevant to, and easily understood by, study participants with pleural and peritoneal mesothelioma. The ePRO version was found to be easy to use, but readability of small font may be an issue. Participants reported minimal differences between their responses on the paper and ePRO version for all of the pain severity and pain interference items. Conclusions Results support the relevance and ease of understanding of the “worst pain” item and provide support for its content validity in patients with pleural and peritoneal mesothelioma. Usability of the ePRO format of the BPI-sf was confirmed for use in clinical trials among patients with pleural mesothelioma

The Relationship Between Patient-Reported Severity of Hair Loss and Health-Related Quality of Life and Treatment Patterns Among Patients with Alopecia Areata

IntroductionAlopecia areata (AA) is an autoimmune disease characterized by hair loss. Patients with AA experience a range of social and emotional impacts, and the lack of effective treatments and multiple affected locations can deepen the burden of illness. The objective of the current study was to assess health-related quality of life (HRQL) among patients with AA, and to evaluate the relationship between patient-reported AA severity, HRQL and treatment patterns.MethodsA web survey was completed by participants recruited through the National Alopecia Areata Foundation. The survey included questions on disease characteristics, burden and impact (evaluated by the Skindex-16 for AA and items on work/school and sexual relationships), healthcare utilization and treatment experience. Analyses were conducted for the overall sample and by key subgroups, including AA severity and disease duration.ResultsA total of 1327 participants with AA completed the survey. The mean age was 39.7 [standard deviation (SD) 12.3] years and 58.4% were female. On average, participants had experienced signs and symptoms of AA for 11.5 years (SD 12.5) and were diagnosed by a healthcare provider (HCP) 10.5 (SD 12.2) years ago. Participants reported a range of severity of current scalp hair loss, including 0% (2.6%), 1-20% (39.8%), 21-49% (26.2%), 50-94% (10.2%) and 95-100% (21.3%). Participants reporting 95-100% of scalp hair missing were less likely to be currently seeing an HCP and to currently be on treatments for AA. There was a non-linear relationship between HRQL and current AA severity. Participants with 1-20% to 50-94% of current scalp hair missing reported higher symptom, functioning and emotional impacts due to AA than participants with 0% missing scalp hair and/or 95-100% missing scalp hair. Similar findings were observed for current eyebrow and eyelash severity, except for emotional impacts.ConclusionSeverity of AA plays an important role in understanding the burden of illness and healthcare patterns of people living with AA