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Background: Quality of life is an important outcome to autistic individuals. However, the correlates of quality of life in this population are not well known. The purpose of this project was to investigate the extent to which employment, depression, anxiety, and social participation were associated with quality of life in autistic individuals. We also explored potential associations between emotion dysregulation and quality of life. Method: Baseline data from two randomized control trials were used for analysis. A total of 125 autistic adolescents and adults aged 16-45 (M = 25.40) participated. Linear regression models were constructed to investigate whether employment, depression, anxiety, and social participation were associated with five domains of quality of life: overall, physical health, psychological, social relationships, and environment. Additional linear regression models explored whether emotion dysregulation was associated with the same quality of life domains. Results: Surprisingly, employment was not significantly associated with any quality of life domain. Greater depression severity was significantly associated with poorer quality of life across all domains. Greater social participation was associated with better quality of life, but only for individuals with lower anxiety. More severe dysphoria was associated with poorer overall quality of life and the psychological and physical health domains. Conclusions: Results suggest that mental health and emotion dysregulation are important predictors of quality of life for autistic people. They also suggest that anxiety symptoms may attenuate the beneficial effects of social participation. This study provides insight into the unique experiences of autistic individuals and highlights potential unmet need.
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INTRODUCTION: Altered sensorimotor function is a common feature of autism spectrum disorder (ASD). As a result, spatiotemporal walking patterns are typically affected. Attentional processes relevant for locomotion may be altered in people with ASD. This study assessed the extent to which gait alterations observed under sensory challenging conditions are due to reduced attention-related processes in young adults with ASD. METHODS: Twenty-one adults with ASD and 21 age- and sex-matched neurotypical participants walked at a self-selected pace on a 10-m walkway under 12 sensory/attention conditions: hard or carpet flooring; well-lit or dim lighting; no attention task, an auditory choice-reaction time information-processing task, or a simple reaction time information-processing task. Gait data were collected with a 12-marker motion capture set and a trunk accelerometer. Spatiotemporal characteristics of gait were derived and compared between the two groups across gait conditions. RESULTS: Floor/light conditions impacted gait speed, average step length, average stance time, average step width, and step width variability similarly in both groups (p<0.05). The information processing tasks impacted average step length, gait speed, and step length variability (p<0.05). Group differences were found in step length metrics: the ASD group had decreased average step length during the simple reaction time information-processing task and neurotypical participants did not (p=0.039); the ASD group had increased variability on carpet compared to hard floor and the neurotypical group had no change in variability due to floor (p=0.015). SIGNIFICANCE: These results suggest that attentional set-shifting and somatosensory inputs may play an important role in ASD-related gait alterations. Step length metrics appear to be sensitive to group differences between ASD and neurotypical adults during sensory challenging conditions.
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Atención , Trastorno del Espectro Autista , Marcha , Humanos , Trastorno del Espectro Autista/fisiopatología , Masculino , Femenino , Atención/fisiología , Adulto Joven , Adulto , Marcha/fisiología , Tiempo de Reacción , Estudios de Casos y ControlesRESUMEN
AIMS: For over 30 years, combined research and treatment settings in the US have been critical to conceptualizing care for first-episode psychosis (FEP). Here we describe an early example of such a context, the Services for the Treatment of Early Psychosis (STEP) clinic, which is affiliated with the University of Pittsburgh. METHODS: We describe STEP's historical roots and establishment in the early 1990s; STEP's research and treatment contributions, alongside its growth and ongoing leadership. RESULTS: Research-based clinics, like STEP, preceded and helped pave the way for the Recovery After an Initial Schizophrenia Episode project in the US and the ensuing Coordinated Specialty Care (CSC) approach, now widely adopted in the US. Early clinic-based research at STEP helped establish protocols for psychopharmacology, the relevance of effective early treatment, including psychosocial approaches, and highlighted disparities in treatment outcomes across race/ethnicity. Multidisciplinary collaboration and dialogue with consumers contributed to early treatment, combining psychosocial and pharmacological approaches. STEP adopted CSC and is situated within a bi-state Learning Health System. STEP has retained a relatively unique 5-year treatment model and exists within continuum of care ideally suited to studying psychotic illness and treatment outcomes. CONCLUSIONS: STEP remains the largest academic FEP clinic in Pennsylvania. Academic FEP clinics like STEP will have a critical role within Learning Health Systems nationally to model participatory approaches, sustain early intervention treatment quality and ongoing treatment developments.
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Individuals with schizophrenia and other associated disorders experience significant disturbance to their quality of life (QoL) due to a multitude of co-occurring symptoms. Popular evidence-based practices (EBPs) devote significant effort to reduce positive symptomatology in order to prevent relapse, while emerging research posits that other symptoms (cognitive deficits, negative and affective symptoms) are more indicative of QoL disturbance. This study sought to examine the impact of symptom constructs on QoL and attempt to infer directionality of influence via network analysis. A total of 102 recovery phase adult outpatients with schizophrenia spectrum disorders were assessed on positive, negative, and affective symptomatology, in addition to QoL and cognitive abilities. Exploratory factor analysis and network analysis were performed to identify associations and infer directed influence between symptom constructs, and a directed acyclic graph was constructed to observe associations between symptom domains and QoL. Factor analysis results indicated that individual measures align with their respective symptom constructs. Strong factor correlations were found between QoL and the negative and affective symptom constructs, with weaker associations found between positive symptoms and cognition. Visualization of the network structure illustrated QoL as the central cluster of the network, and examination of the weighted edges found the strongest connectivity between QoL, negative symptomatology, and affective symptoms. More severe negative and affective symptoms were most directly linked with poorer QoL and may prove to be integral in attaining positive outcomes in schizophrenia treatment. Incorporation of psychosocial treatments in addition to pharmacotherapy may prove effective in targeting negative and affective symptoms.
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Trastornos del Conocimiento , Esquizofrenia , Adulto , Humanos , Esquizofrenia/tratamiento farmacológico , Calidad de Vida/psicología , Psicología del Esquizofrénico , Pacientes Ambulatorios , Trastornos del Conocimiento/diagnósticoRESUMEN
Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800 + self-reporters with IDDs and 800 + caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them.
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OBJECTIVE: The Clubhouse model (CM) for serious mental illness is a recovery-oriented and member-driven program that aims to facilitate functional recovery. Efficacy evaluation of the CM is limited by lack of uniform functional disability assessment. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS-2.0) is a widely accepted measure of functional disability, but its psychometric properties have yet to be examined within the CM. METHOD: This research sought to confirm the generic six-factor structure of the 12-item WHODAS-2.0 using retrospective administrative data from 339 adults with serious mental illness from an accredited Clubhouse. A second-order confirmatory factor analysis was conducted, followed by secondary known-groups analyses to examine whether the WHODAS-2.0 differentiates between subgroups with varying degrees of disability. RESULTS: The WHODAS-2.0 demonstrated good overall reliability. The generic six-factor structure produced nonsignificant loadings due to lack of independence between the "participation" and "getting along" factors. The items of these two factors were combined into a five-factor model, which displayed excellent fit, with all significant paths and adequate-to-strong loadings, and no correlation among errors. The WHODAS-2.0 significantly differentiated members by receipt of public assistance, employment status, and number of medical comorbidities, supporting construct validity. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: These results provide initial support for the use of the 12-item WHODAS-2.0 as a CM-related outcome measure and encourage future research of the full 36-item version. The intentional community approach of the CM is unique and may require adjustments to the factor structure of the WHODAS-2.0 by merging the "participation" and "getting along" domains. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Autistic transition-age youth experience high rates of unemployment and underemployment, in part due to the social challenges they may face when having conversations in the workplace. In an effort to help enhance conversational abilities in the workplace, our collaborative team partnered to develop WorkChat: A Virtual Workday. Specifically, our team of scientists, community partners, and diversity and inclusion experts participated in a community-engaged process to develop WorkChat using iterative feedback from autistic transition-age youth and their teachers. With initial development complete, this study reports on the protocol that our collaborative team developed, reviewed, and approved to conduct a randomized controlled trial (RCT) to evaluate the real-world effectiveness and initial implementation process outcomes of WorkChat when integrated into post-secondary pre-employment transition services (Pre-ETS). Our aims are to: 1) evaluate whether services-as-usual in combination with WorkChat, compared to services-as-usual with an attention control, enhances social cognition and work-based social ability (between pre- and post-test); reduces anxiety about work-based social encounters (between pre- and post-test), and increases sustained employment by 9-month follow-up; 2) evaluate whether social cognitive ability and work-based social ability mediate the effect of WorkChat on sustained employment; and 3) conduct a multilevel, mixed-method process evaluation of WorkChat implementation.
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Treatment discontinuation during clinical trials in schizophrenia is a critical challenge, especially for longer-term interventions in the early course. This research explored predictors of treatment discontinuation in an outpatient early course schizophrenia sample (N = 102) during an 18-month multi-site trial of Cognitive Enhancement Therapy (n = 58) and Enriched Supportive Therapy (n = 44). Fifty-three (52%) participants discontinued, with no significant difference between the treatment groups in discontinuation rate. Univariate and multivariate binary logistic regression models explored differences in key demographic and cognitive and behavioral outcomes between participants who completed and discontinued treatment. Significant multivariate predictors of discontinuation included IQ (linear) and problem solving (curvilinear). The concave shape of the problem solving prediction demonstrated that initially as scores were increasing the probability of non-completion was increasing. However, after a score of 41 (below average problem solving), the probability of being a non-completer decreased as performance increased. Non-completers had significantly lower IQ scores compared to completers. Post-hoc analyses indicated that participants who discontinued prior to mid-treatment exhibited the greatest intellectual challenges, with comparisons moderate-to-large in strength. IQ and problem solving are likely important factors to assess at pre-treatment in early course schizophrenia trials to identify those most vulnerable to discontinuation.
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Terapia Cognitivo-Conductual , Esquizofrenia , Humanos , Esquizofrenia/tratamiento farmacológico , CogniciónRESUMEN
Borderline personality disorder (BPD) is a debilitating clinical disorder associated with adverse impacts on multiple levels. While a high prevalence of childhood trauma has been noted, the ways such trauma impacts the development of BPD symptomatology remain unclear. In this systematic review, the authors examine the literature from 2000 to 2020, focusing on the association between trauma and BPD, and offer a comprehensive synthesis of possible etiological implications related to either one specific or multiple trauma types. In addition, results are analyzed based on commonly tested trauma parameters, including repeated exposure, polytrauma, onset, perpetrators, and gender. The authors also note some limitations in areas of sampling, measurement, causal inference methods, and data analyses. Results of this review point to several parameters of trauma that can be used to inform training for practitioners as well as enhance current interventions.
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Experiencias Adversas de la Infancia , Trastorno de Personalidad Limítrofe , Preescolar , Humanos , Trastorno de Personalidad Limítrofe/diagnóstico , Trastorno de Personalidad Limítrofe/epidemiología , Trastorno de Personalidad Limítrofe/etiologíaRESUMEN
BACKGROUND: Borderline Personality Disorder (BPD) is characterized by pervasive instability in a range of areas including interpersonal relationships, self-image, and affect. Extant studies have consistently identified significant correlations between childhood maltreatment (CM) and BPD. While exploring this CM-BPD link, a number of cross-sectional studies commonly emphasize the role of emotion dysregulation (ED). A better understanding of the associations between BPD and (1) CM and (2) ED are essential in formulating early, effective intervention approaches, and in addressing varied adverse impacts. METHODS: This cross-sectional study analyzed a subset of baseline data collected for a larger community-based longitudinal study. Given that our current focus on CM and ED, only those participants who completed the baseline CM assessment and ED measure (N = 144) were included for the primary analyses. We conducted stepwise multivariate linear models to examine the differential relationships between BPD features, ED, and multiple CM types. A path analysis with latent factors using the structural equation modeling (SEM) method was performed to test the indirect effect from CM to BPD features via ED. RESULTS: Linear regression models revealed that only emotional abuse (relative to other trauma types) was significantly associated with high BPD features. The SEM, by constructing direct and indirect effects simultaneously, showed that (1) ED partially mediated the path from CM to BPD features; and (2) CM played an important role in which the direct effect remained significant even after accounting for the indirect effect through ED. CONCLUSIONS: Our results highlight a most consistent association between emotional abuse and BPD, indicating its unique role in understanding BPD features in the context of CM. Further, shame-related negative appraisal and ED were found critical when examining the association between CM and BPD, possibly providing promising treatment targets for future practices.
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Obtaining an autism spectrum disorder (ASD) diagnosis is often challenging for parents. The purpose of this study was to better understand this process and examine how elements of the process may influence parent satisfaction. A total of 406 parents of autistic children participated. Participants were administered a survey covering the ASD diagnostic process. Parents had developmental concerns early but experienced long wait times and usually attended many appointments. Mean diagnostic age was 3.26 years and overall delay was 1.20 years. Stress and being told there was "no problem" were significantly associated with parental satisfaction with the process. Findings provide insight into challenges experienced by families of autistic children and can help pinpoint areas where the diagnostic process may be improved.
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Trastorno del Espectro Autista , Niño , Humanos , Preescolar , Trastorno del Espectro Autista/diagnóstico , Padres , Encuestas y Cuestionarios , Satisfacción PersonalRESUMEN
Sensory abnormalities are characteristic of autism and schizophrenia. In autism, greater trial-to-trial variability (TTV) in sensory neural responses suggest that the system is more unstable. However, these findings have only been identified in the amplitude and not in the timing of neural responses, and have not been fully explored in schizophrenia. TTV in event-related potential amplitudes and inter-trial coherence (ITC) were assessed in the auditory mismatch negativity (MMN) in autism, schizophrenia, and controls. MMN was largest in autism and smallest in schizophrenia, and TTV was greater in autism and schizophrenia compared to controls. There were no differences in ITC. Greater TTV appears to be characteristic of both autism and schizophrenia, implicating several neural mechanisms that could underlie sensory instability.
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Trastorno del Espectro Autista , Trastorno Autístico , Esquizofrenia , Humanos , Potenciales Evocados Auditivos/fisiología , Estimulación Acústica , Electroencefalografía , Potenciales EvocadosRESUMEN
BACKGROUND: Precision implementation science requires methods to evaluate and select implementation strategies. This study developed and evaluated a novel measure of concordance between current and preferred dissemination channels (DC) and implementation strategies (IS) to guide efforts to improve the adoption of evidence-based management strategies for chronic pain. METHODS: We conducted a one-time electronic survey of Pennsylvania primary care practitioners (PCPs) about current vs. preferred chronic pain management DC and IS use. Survey items were selected based on preliminary data, the Model for Dissemination of Research, and the Evidence-Based Recommendations for Implementing Change taxonomy of implementation strategies. We used Cohen's kappa (κ) to assess the agreement between participant-level current and preferred DC/IS. We calculated % preferred minus % experienced for each DC/IS and assessed the equality of proportions to determine whether this difference significantly departed from zero. We categorized DC and IS based on the degree of use and preference, to evaluate alignment. RESULTS: The current sample included 101 Pennsylvania PCPs primarily in urban (94.06%), non-academic (90.10%) settings who self-identified as mostly female (66.34%) and white (85.15%). The greatest difference between preferred and experienced DCs, or "need," was identified by participants as workshops, clinical experts, seminars, and researchers. Similarly, participants reported the greatest IS gaps as multidisciplinary chronic pain workgroups, targeted support for clinicians, and a chronic pain clinical champion. Participating PCPs had moderate DC concordance (kappa = 0.45, 95% CI = 0.38-0.52) and low IS concordance (kappa = 0.18, 95% CI = 0.13-0.23). DC and IS concordance were both greater than that expected by chance. We further identified well-aligned DC and IS, including professional organizations, briefs, and guidelines. CONCLUSION: We identified a novel implementer-reported outcome of dissemination channel and implementation strategy concordance that allows implementation scientists to quantify the magnitude of the gap between the current and preferred experience of implementers. This quantitative measure can help with the selection and evaluation of dissemination channels and implementation strategies. Future research should leverage this measure to understand the degree to which preference concordance influences clinical outcomes and performance.
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BACKGROUND: Schizophrenia and related disorders are highly disabling and create substantial burdens for families, communities, and health care systems. Although pharmacological treatments can often lessen the psychotic symptoms that are a hallmark of schizophrenia, they do not lessen the social and cognitive deficits that create the greatest impediments to community engagement and functional recovery. This study builds on prior research on psychosocial rehabilitation by comparing the effectiveness of two treatments demonstrated as efficacious in improving social and community functioning, Cognitive Enhancement Therapy (CET) and a version of Social Skills Training (HOPES/SST). METHODS: The study uses a randomized cluster design in which a pair of clinicians at community- and hospital-based mental service centers deliver either CET or HOPES to at least one group of 6-8 eligible clients for 12 months. Clinicians are trained and then supervised weekly, with ongoing process measurement of treatment fidelity, attendance, satisfaction, and retention, and use of other services. Measures administered at baseline and at 6 and 12 months while in treatment, and then at 18 and 24 months after treatment include social adjustment, quality of life, social skills, positive and negative symptoms, and neuro- and social cognition. We hypothesize that CET will be associated with greater improvements than SST in both the primary outcome of community functioning and the secondary outcomes of neuro- and social cognition and social skills. Secondarily, we hypothesize that more cognitive impairment at baseline and younger age will predict more benefit from CET compared to HOPES. DISCUSSION: Resource shortages endemic in mental health services and exacerbated by the pandemic highlight the importance of identifying the most effective approach to improving social and community functioning. We aim to improve understanding of the impact of two efficacious psychosocial treatments and to improve clinicians' ability to refer to both treatments the individuals who are most likely to benefit from them. We expect the result to be programmatic improvements that improve the magnitude and durability of gains in community functioning. TRIAL REGISTRATION: ClinicalTrial.gov NCT04321759 , registered March 25, 2020.
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Terapia Cognitivo-Conductual , Esquizofrenia , Cognición , Humanos , Calidad de Vida , Esquizofrenia/diagnóstico , Habilidades Sociales , Resultado del TratamientoRESUMEN
BACKGROUND: Stress can lead to adverse physiological and psychological outcomes. Therefore, understanding stress during pregnancy provides insight into racial disparities in maternal health, particularly Black maternal health. OBJECTIVES: This study aimed to describe (1) daily exposure to self-reported stress levels during pregnancy, and (2) sources of stress among participants that identified as Black or White using data collected via ecological momentary assessment. METHODS: We leveraged survey data from the Postpartum Mothers Mobile Study, a prospective longitudinal study using ecological momentary assessment data collection methods to describe patterns of stress during pregnancy. This article is descriptive and documents patterns of self-reported stress levels and sources of stress. Frequencies and percentages of stress responses were computed to describe these patterns. RESULTS: The sample (n = 296) was 27% Black (n = 78) and 63% White (n = 184). Results were based on at least one measurement of that stress level during pregnancy. A similar number of Black and White participants reported no stress during pregnancy. White (85%-95%) and Black (60%-70%) participants reported low to moderate levels of stress. Black participants (38%) and White participants (35%) reported experiencing high stress. Black and White participants reported similar sources of stress: stress from a partner, too many things to do, a baby or other children, and financial concerns. White participants reported work as a top stressor, and Black participants reported financial issues as a top source of stress. CONCLUSION: This study provides insight into daily exposure to stress that has implications for maternal health. We described patterns of self-reported stress and sources of stress among Black and White participants. The daily exposures to stress reported by this sample exist within a context of root causes of structural inequities in education, health care, income, wealth, and housing that must be addressed to achieve maternal health equity.
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Evaluación Ecológica Momentánea , Salud Materna , Población Negra , Niño , Femenino , Humanos , Estudios Longitudinales , Embarazo , Estudios ProspectivosRESUMEN
Individuals with autism typically experience a range of symptoms, including abnormal sensory sensitivities. However, there are conflicting reports on the sensory profiles that characterize the sensory experience in autism that often depend on the type of stimulus. Here, we examine early auditory processing to simple changes in pitch and later auditory processing of more complex emotional utterances. We measured electroencephalography in 24 adults with autism and 28 controls. First, tones (1046.5Hz/C6, 1108.7Hz/C#6, or 1244.5Hz/D#6) were repeated three times or nine times before the pitch changed. Second, utterances of delight or frustration were repeated three or six times before the emotion changed. In response to the simple pitched tones, the autism group exhibited larger mismatch negativity (MMN) after nine standards compared to controls and produced greater trial-to-trial variability (TTV). In response to the prosodic utterances, the autism group showed smaller P3 responses when delight changed to frustration compared to controls. There was no significant correlation between ERPs to pitch and ERPs to prosody. Together, this suggests that early auditory processing is hyper-sensitive in autism whereas later processing of prosodic information is hypo-sensitive. The impact the different sensory profiles have on perceptual experience in autism may be key to identifying behavioral treatments to reduce symptoms.