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Objectives Adults who engage in altruistic social interest behaviors experience better mental health and have lower mortality rates than non-altruistic adults. The present study investigated the relationship between altruism and h...
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Objectives Adults who engage in altruistic social interest behaviors experience better mental health and have lower mortality rates than non-altruistic adults. The present study investigated the relationship between altruism and health and well-being in teens, and demographic and lifestyle variables. Methods A cross-sectional survey was implemented with a national sample of teens recruited through the Presbyterian Church (U.S.A.). Measures included the PedsQL, the Ryff Psychological Well-Being Scale, and a new self-report scale of Altruism (subscales: Receiving/ Providing Emotional Support, Family Helping Behavior, General Helping Behavior, and Helping Orientation). Results Data were collected from 457 teens (M age = 15.6, sd 1.2). Psychometric analyses revealed that a five-factor model fit the altruism data well. Multivariate regression revealed no association between providing emotional support and psychosocial health. There were, however, many associations between altruism and well-being, and differential associations by gender. Family helping was the most salient aspect of altruism for males, showing associations with positive social relations, purpose in life, and self-acceptance. For females, General Helping Behavior was associated with positive social relations, and Helping Orientation was associated with better purpose in life. Family Helping was associated with better physical health in females, but not for males. The only correlates of altruism were higher age, more physical activity, and engaging in positive religious coping. Conclusions Altruism is positively associated with health for females and with well-being for both males and females. Different gender-specific interventions to guide teens in doing more altruistic activities may have to be designed to capitalize on these different associations.
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We evaluated whether resources mediate and/or moderate the relationship between altruism and health outcomes in adults with lumbar spine disorders. Hierarchical regression modeling on 243 persons with lumbar spine disorders evalua...
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We evaluated whether resources mediate and/or moderate the relationship between altruism and health outcomes in adults with lumbar spine disorders. Hierarchical regression modeling on 243 persons with lumbar spine disorders evaluated gender differences and whether physical, emotional, and economic resources mediated or moderated the relationship between altruism (Schwartz Altruism) and health (Rand-36, PROMIS Pain Impact). Men and women had similar altruism subscale scores, but there were gender differences in the altruism-health relationships. Both men and women had better mental health with higher levels of Community Connection, after adjusting for Community Pressure, and this effect was mediated by emotional resources. Women evidenced better physical health and less pain impact when they endorsed higher levels of Community Connection and/or General Helping aspects of altruism. Physical and economic resources partially but did not fully mediate women’s altruism-physical health link. The altruism-pain impact link was not significant after adjusting for covariates. Men and women report similar levels of altruism but enjoy different benefits. Emotional resources explained the altruism-mental health link in both genders, but women experienced a physical health benefit of altruism that was not mediated by resources. Future research should test causal relationships.
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This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories.This longitudinal study of the psychosocial impa...
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This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories.This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. The depression index was validated using item-response-theory methods and receiver-operating-characteristic curve analysis. The Quality of Life (QOL) Appraisal Profilev2 Short-Form assessed cognitive-appraisal processes. Sequence analysis characterized depression-trajectory groups, and random effects models examined appraisal main effects, appraisal-by-group, and appraisal-by-group-by-time interactions.Sequence analysis generated six trajectory groups: Stably Well (n = 241), Stably Depressed (n = 299), Worsening (n = 79), Improving (n = 83), Fluctuating Pattern 1 (No–Yes–No; n = 41), and Fluctuating Pattern 2 (Yes–No–Yes; n = 28). While all groups engaged in negative appraisal processes when they were depressed, the Stably Depressed group consistently focused on negative aspects of their life. Response-shift effects were revealed such that there were differences in the appraisal-depression relationship over time for standards of comparison and recent changes for the Stably Depressed, and in health goals for those Getting Better.The present work is, to our knowledge, the first study of response-shift effects in depression. During these first 15.5 pandemic months, group differences highlighted the connection between negative appraisals and depression, and response-shift effects in these relationships over time. Egregious life circumstances may play a lesser role for the Stably Depressed but a greater role for people who have transient periods of depression as well as for those with improving trajectories (i.e., endogenous vs. reactive depression). How one thinks about QOL is intrinsically linked to mental health, with clear clinical implications.
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Aims Paroxysmal nocturnal hemoglobinuria (PNH) is a rare and life-threatening intravascular hematologic disorder with significant morbidity and premature mortality. Clinical trials (NCT02946463 and NCT03056040) comparing ravulizum...
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Aims Paroxysmal nocturnal hemoglobinuria (PNH) is a rare and life-threatening intravascular hematologic disorder with significant morbidity and premature mortality. Clinical trials (NCT02946463 and NCT03056040) comparing ravulizumab with eculizumab for PNH have supported the non-inferiority of the former and similar safety and tolerability. This secondary analysis compared PNH trial participants after 26?weeks on either treatment (n?=?438) to a general-population sample (GenPop) (n?=?15,386) and investigated response-shift effects. Methods Multivariate analysis of covariance (MANCOVA) investigated function and symptom scores on the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 of people with PNH as compared to GenPop, after covariate adjustment. Risk-factor groups were created based on clinical indicators known to be associated with worse PNH outcomes, and separate MANCOVAs were computed for lower- and higher-risk-factor groups. Differential item functioning (DIF) analyses examined whether item response varied systematically (1) by treatment, (2) compared to GenPop, and (3) over time, the latter two suggesting and reflecting response-shift effects, respectively. DIF analyses examined 24 items from scales with at least two items. Recalibration response shift was operationalized as uniform DIF over time, reflecting the idea that, for a given group, the difficulty of endorsing an item changes over time, after adjusting for the total subscale score. Reprioritization response shift was operationalized as non-uniform DIF over time, i.e., the relative difficulty of endorsing an item over time changes across the total domain score. Results Across PNH risk-factor levels, people who had been on either treatment for 26?weeks reported better-than-expected functioning and lower symptom burden compared to GenPop. Ravulizumab generally showed larger effect sizes. Results were similar for lower and higher PNH risk factors, with slightly stronger effects in the former. DIF analyses revealed no treatment DIF, but did uncover group DIF (9 items with uniform DIF, and 11 with non-uniform) and DIF over time (7 items with uniform DIF, and 3 with non-uniform). Conclusions This study revealed that people with PNH on ravulizumab or eculizumab for 26?weeks reported QOL levels better than those of the general population. Significant effects of DIF by group and DIF over time support recalibration and reprioritization response-shift effects. These findings suggest that the treatments enabled adaptive changes.
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Background Person-reported outcomes measurement development for rare diseases has lagged behind that of more common diseases. In studies of caregivers?of patients with rare diseases, one relies on proxy report to characterize this...
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Background Person-reported outcomes measurement development for rare diseases has lagged behind that of more common diseases. In studies of caregivers?of patients with rare diseases, one relies on proxy report to characterize this disability. It is important to measure the child’s disability accurately and comprehensively because it affects caregiver burden. We aimed to create a condition-specific caregiver proxy-report measure for Duchenne Muscular Dystrophy (DMD) in order to understand the impact of DMD on the caregiver. Drawing on relevant item banks from the Patient-Reported Outcome Measurement Information System (PROMIS), we sought to confirm their reliability and validity in the target sample of DMD caregivers. Methods This web-based study recruited DMD caregivers via Rare Patient Voice, patient-advocacy groups, and word of mouth. Recruitment was stratified by age of the caregiver’s child with DMD, which broadly represents stages of DMD progression: 2–7, 8–12, 13–17, and >?18. Telephone interviews with DMD parent-caregivers pretested possible measures for content validity. The web-based study utilized an algorithm to categorize respondents’ ambulatory status for tailored administration of PROMIS Parent-Proxy items as well as some new items developed based on caregiver interviews. Item response theory analyses were implemented. Results The study sample included 521 DMD caregivers representing equally the four age strata. The proxy-report measure included the following domains: fatigue impact, strength impact, cognitive function, upper extremity function, positive affect, negative affect, sleep-device symptoms, and mobility. The first five domains had strong psychometric characteristics (unidimensionality; acceptable model fit; strong standardized factor loadings; high marginal reliability). Negative Affect, covering anger, anxiety, depressive symptoms, and psychological stress, fit a bifactor model with good model fit, high marginal reliability, and strong factor loadings. The Sleep-device symptoms domain was not unidimensional, and the mobility domain did not have a simple structure due to residual correlations among items at opposite end of the mobility-disability continuum. These two domain scores were retained as clinimetric indices (i.e., uncalibrated scales), to achieve the overall goal of having a content-valid DMD-specific measure across all stages of disease severity. Conclusions The present study derived a DMD-specific proxy-report measure from PROMIS item banks and supplemental items that could potentially be utilized in caregiver research across all stages of the care recipient’s DMD. Future research will focus on assessing the responsiveness and validity of the measure over time and its comparison to DMD patient self-report.
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Purpose To illustrate how structural equation modeling (SEM) can be used for response shift detection with random measurement occasions and health state operationalized as fixed group membership (Study 1) or with fixed measurement...
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Purpose To illustrate how structural equation modeling (SEM) can be used for response shift detection with random measurement occasions and health state operationalized as fixed group membership (Study 1) or with fixed measurement occasions and health state operationalized as time-varying covariates (Study 2).
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Background Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, life-threatening terminal-complement-mediated disease resulting in intravascular hemolysis and thrombosis with significant morbidity and premature mortality. There ex...
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Background Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, life-threatening terminal-complement-mediated disease resulting in intravascular hemolysis and thrombosis with significant morbidity and premature mortality. There exists no disease-specific quality-of-life (QOL) measure for PNH. Its QOL effects resemble those of hematologic cancers, which supports the use of cancer-specific QOL measures in PNH clinical trials. The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 has published norms for many European and North American countries, but not for Asian countries. We investigated differences by Asian ethnicity in scores and item function on the EORTC QLQ-C30. Methods This secondary analysis focused on two non-inferiority PNH trials (301 and 302) comparing eculizumab and ravulizumab (n?=?441). Analysis of covariance examined the main effect of Asian ethnicity on baseline EORTC QLQ-C30 scores, after adjusting for propensity scores encompassing trial, demographic and clinical factors. Mixed modeling of longitudinal data compared subscale scores in Asian vs. non-Asian patients, after propensity adjustment. Differential item function (DIF) was examined using ordinal regression models at baseline and longitudinally, to predict item score from total score, ethnicity, and their interaction to test for uniform DIF (significant main effect for Asian) and non-uniform DIF (significant Asian-by-total-score interaction). Results Of the 15 baseline domains, Asian patients scored slightly better on role and emotional functioning and slightly worse on constipation and diarrhea (0.22?<?Cohen’s d?<?0.36). In longitudinal models, Asians reported slightly higher appetite loss, diarrhea, and financial difficulties than non-Asians (R 2 increment?<?0.0005). There was negligible uniform and non-uniform DIF, i.e., R 2 0 to 0.018, far below Zumbo’s (1999) criterion of 0.13. On average there were larger differences from norms for Asians (mean?=?0.05, sd?=?0.44) than non-Asians (mean?=?-0.07, sd?=?0.36), but the size and direction of the differences varied considerably by domain, age, and gender. Conclusion When compared to norms, Asian patients showed no systematic biases. DIF results supported this finding. We conclude that Asian ethnicity does not impact interpretation of EORTC QLQ-C30 scores.
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Rates of medication nonadherence in youth with multiple sclerosis (MS) range from 10% to 60%. Qualitative studies of adherence can provide insight into children’s own perspectives about barriers and facilitators to their adherenc...
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Rates of medication nonadherence in youth with multiple sclerosis (MS) range from 10% to 60%. Qualitative studies of adherence can provide insight into children’s own perspectives about barriers and facilitators to their adherence and inform future interventions. This qualitative longitudinal descriptive study included children with MS ( n = 28) participating in a randomized controlled trial focused on medication adherence ( clinicaltrials.gov : NCT02234713). Following established methods, three independent reviewers coded transcripts of motivational interviewing (MI) sessions (three interviews per subject, performed monthly over a 3-month period) for relevant themes. They were subsequently categorized using inductive content analysis. Youth described medication adherence as being dependent on the ability to build and maintain healthy habits related to medication use, including embodiment of these habits. Barriers and facilitators included remembering/forgetting, experiences with fatigue, and experiences with medication. These themes were maintained through the second and third interviews. Future research focus on barriers and facilitators to habit maintenance in this population.
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Patient-centered research has emerged as critically important for understanding the impact of treatments on key stakeholders. The subjective experience of quality of life (QOL) is increasingly recognized as fundamental to delineat...
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Patient-centered research has emerged as critically important for understanding the impact of treatments on key stakeholders. The subjective experience of quality of life (QOL) is increasingly recognized as fundamental to delineating treatment goals. The present study utilized content analysis of qualitative data and quantitative analysis to highlight important domains of disease burden and underlying reasons for their importance, and to characterize goals for new treatments for Duchenne Muscular Dystrophy (DMD).The study sample reflected the perspectives of DMD patients and caregivers representing ambulatory, transitional, and non-ambulatory stages of disability progression (n = 20 per category). Open-ended interviews were content-analyzed and non-parametric statistical tests were used to compare ambulation groups. As patients progressed in disability, the noted DMD burdens reflected some differences in functional areas. While daily functioning and sports/recreation remained the most important priority areas across ambulation groups, “health” became less prominent as the disability progressed from ambulatory to transitional to non-ambulatory phases of disability; whereas relationships became more prominent as one progressed to the non-ambulatory phase from the ambulatory or transitional phases (Kruskall Wallis H = 12.24 and 5.28, p = 0.002 and 0.02, respectively). When asked why their burdens were important to them and how it impacted their or their child’s life, self-esteem/confidence was most important for ambulatory patients, and became less prominent for patients in the transitional and non-ambulatory phases of disability (Kruskall Wallis H = 9.46, p = 0.009). In contrast, independence was less important for ambulatory patients, and became increasing prominent for patients in the transitional and non-ambulatory phases of disability (Kruskall Wallis H = 7.35, p = 0.025). Emotional functioning was most prominent for all ambulation groups on their best and worst days. Goals for new DMD treatments focused on functional goals, general QOL goals, and concerns about safety, ease of use, and effectiveness.This study provides useful information about treatment goals for DMD from the perspective of patients and their caregivers. It highlights some consistent values across the disability trajectory, as well as introducing an evolution of priorities as the person with DMD becomes more disabled. Results provide a roadmap for patient-centered DMD drug development.
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Objective With the evolution of theory and methods for detecting recalibration, reprioritization, and reconceptualization response shifts, the time has come to evaluate and compare the current statistical detection techniques. Thi...
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Objective With the evolution of theory and methods for detecting recalibration, reprioritization, and reconceptualization response shifts, the time has come to evaluate and compare the current statistical detection techniques. This manuscript presents an overview of a cross-method validation done on the same patient sample.
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