In a retrospective analysis of 147 patients who underwent early LT (before 6 months of abstinence) for severe AH, we found that most patients survive for 1 year (94%) and 3 years (84%), similar to patients receiving liver transplants for other indications. Sustained alcohol use after LT was infrequent but associated with increased mortality. Our findings support the selective use of LT as a treatment for severe AH. Prospective studies are needed to optimize selection criteria, management of patients after LT, and long-term outcomes.
BACKGROUND:The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/postintervention comparison. PARTICIPANTS: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS:The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare-and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.KEY WORDS: autism; adults; community-based participatory research; primary care; healthcare interactions.
Violence against people with developmental disabilities is a highly prevalent yet understudied phenomenon. In particular, there is a paucity of literature surrounding the role of gender and the experiences of men. Using a cross-sectional study design, we surveyed 350 people with diverse developmental disabilities about experiences of abuse, perpetrators of abuse, and their physical and mental health status. These data were analyzed to determine whether gender influenced these domains. Statistical methods included chi-square, independent t tests, logistic regression, and hierarchical multiple regressions. Male and female participants reported abuse at high rates, with 61.9% of men and 58.2% of women reporting abuse as children and 63.7% of men and 68.2% of women reporting abuse as adults. More women than men reported adult sexual abuse, but there was no gender difference in the prevalence of any other form of abuse. Women were more likely than men to identify an intimate partner as their abuser, although intimate partners represented the minority of abusers for both men and women. Violence was associated with worse health status regardless of participant gender. These findings confirm that violence is an important issue for both men and women with developmental disabilities. Although some expected gender differences arose, such as higher rates of adult sexual abuse and intimate partner violence against women, these differences were less pronounced than they are in the general population, and the overall picture of abuse was one of gender similarities rather than differences.
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