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1.
Autism Adulthood ; 6(1): 95-105, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38435322

ABSTRACT

Background: TikTok is a popular social media site for connecting with others online where many users also access and share health-related information. Previous studies have characterized information shared about specific disabilities on TikTok, but descriptions of autism-related content are lacking. Understanding the information shared about autism on TikTok is important to understanding health communication in this space, the lived experiences of autistic people, and the role that social media platforms play in building community through connection, understanding, and inclusion. Methods: We used an open-source data scraper to identify and download videos with at least 1 million views and that used the hashtag #autism from TikTok. Using a joint inductive and deductive approach, we performed a content analysis of videos. We identified six content topics that described video content (e.g., positive social interactions and features of autism), and three categories that described video purpose (e.g., educational, experiential, and observational). We used descriptive statistics to describe characteristics of who was in the TikTok videos. Results: We analyzed n = 678 videos. The most common content topic of TikTok videos was features of autism (39.7%), followed by marginalization (25.4%). Most videos were categorized as experiential (61.4%) or observational (31.4%) rather than educational (7.2%). Approximately 65.5% of videos featured an autistic adult and 22.6% featured an autistic child. Among videos featuring an autistic person (n = 594), most autistic people were perceived to be White (87.0%) with similar numbers of feminine (52.9%) and masculine (44.8%) presenting autistic people. Conclusions: Highly viewed #autism TikTok videos primarily share autistic people's individual experiences rather than providing general education about autism. However, autistic Black, Indigenous, and people of color may have difficulty finding others that represent them along both disability and racial dimensions. Future research should investigate autistic people's motivations for using TikTok, and how #autism content shapes social discourse about autism.


What was the purpose of this study?: We wanted to describe information about autism that is highly viewed on TikTok to better understand what people see, hear, and learn about autism online. Autism content on TikTok can help autistic people find others with similar experiences and build community and can shape the way nonautistic people view and interact with autistic people. What did the researchers do?: We downloaded videos from TikTok that used the hashtag #autism and had at least 1 million views. We watched the videos and assigned each video a content topic and a category. Content topics described the content of the video and categories described the purpose of the video. What were the results of the study?: We included 678 videos grouped into six content topics: (1) features of autism, which included videos about restrictive and repetitive behaviors, social and communication differences, associated core experiences, and talents; (2) marginalization, which included videos about lack of access, stigma and misconceptions, and inspiration porn; (3) supports, which included accommodations, services and interventions, and caregiving; (4) positive social interactions; (5) daily life; and (6) miscellaneous/other.The most common content topic was features of autism (39.7%), followed by marginalization (25.4%). The least common content topic was positive social interactions (5.2%). The most common category of videos was experiential (61.4%), followed by observational (31.4%) and educational (7.2%). More than half of the videos included an autistic adult, and about a quarter included an autistic child. Among the videos that included an autistic person, most autistic people were perceived to be White, and there were similar numbers of masculine and feminine-presenting autistic people. What do these findings add to what was already known?: We know that many autistic people like to communicate online and use social media. These findings show that most of the content about autism on TikTok involves autistic people sharing their life experiences instead of providing "facts" or education about autism. Because autistic people from diverse backgrounds were less often present in videos, these individuals may have difficulty connecting with each other on TikTok. What are potential weaknesses in this study?: We did not download TikTok videos while logged into a user account, so the videos we included may be different than the videos shown to an individual user who searches #autism. The way that we categorized videos may have been different from how others would have done so. We did not include less-viewed videos in the study, which could have had different content topics. Our perceptions of the gender, race, and ethnicity of people in videos may not reflect how they would self-identify. How will these findings help autistic adults now or in the future?: These findings may be helpful for autistic adults who are looking for online community building with other autistic people. Because many autistic people shared their lived experiences, these findings may promote understanding and acceptance of autistic people by nonautistic people.

2.
J Nutr ; 154(5): 1582-1587, 2024 05.
Article in English | MEDLINE | ID: mdl-38521191

ABSTRACT

BACKGROUND: Iron deficiency is the most common nutritional deficiency worldwide, particularly for young children and females of reproductive age. Although oral iron supplements are routinely recommended and generally considered safe, iron supplementation has been shown to alter the fecal microbiota in low-income countries. Little is known about the effect of iron supplementation on the fecal microbiota in high-income settings. OBJECTIVES: To assess the effect of oral iron supplementation compared with placebo on the gut microbiome in nonpregnant females of reproductive age in a high-income country. METHODS: A 21-d prospective parallel design double-blind, randomized control trial conducted in South Australia, Australia. Females (18-45 y) were randomly assigned to either iron (65.7 mg ferrous fumarate) or placebo. Fecal samples were collected prior to commencing supplements and after 21 d of supplementation. The primary outcome was microbiota ß-diversity (paired-sample weighted unique fraction metric dissimilarity) between treatment and placebo groups after 21 d of supplementation. Exploratory outcomes included changes in the relative abundance of bacterial taxa. RESULTS: Of 82 females randomly assigned, 80 completed the trial. There was no significant difference between the groups for weighted unique fraction metric dissimilarity (mean difference: 0.003; 95% confidence interval: -0.007, 0.014; P = 0.52) or relative abundance of common bacterial taxa or Escherichia-Shigella (q > 0.05). CONCLUSIONS: Iron supplementation did not affect the microbiome of nonpregnant females of reproductive age in Australia. This trial was registered at clinicaltrials.gov as NCT05033483.


Subject(s)
Dietary Supplements , Feces , Gastrointestinal Microbiome , Humans , Female , Gastrointestinal Microbiome/drug effects , Adult , Double-Blind Method , Young Adult , Feces/microbiology , Adolescent , Iron/administration & dosage , Iron/pharmacology , Middle Aged , South Australia , Anemia, Iron-Deficiency , Prospective Studies
3.
J Comp Eff Res ; 13(3): e230051, 2024 03.
Article in English | MEDLINE | ID: mdl-38294339

ABSTRACT

Aim: Previous research using state or regional samples has shown that autistic adults have a higher prevalence of health conditions in comparison to the general population. Methods: To build upon this important previous research, we conducted a cross-sectional retrospective study of 2019-2020 healthcare claims to determine the prevalence of conditions in a US national sample of privately insured autistic adults (n = 30,258) and an age- and sex-matched population comparison (n = 60,516) group of adults without autism diagnoses. Results: Like previous studies, we found that autistic adults had significantly greater odds of most mental and physical health conditions. However, our prevalence estimates differed from previous studies for several mental and physical health conditions. For example, our sample of autistic adults had higher prevalence of anxiety disorders (55%) and attention deficit hyperactivity disorders (34%), but lower prevalence of asthma (9%) and sleep disorders (3%) than previous studies. Discussion & conclusion: Our use of a large US national sample, more recent healthcare claims data, and different methods for identifying health conditions may have contributed to these differences. Our findings alert healthcare providers and policymakers to the health conditions most common among the growing population of autistic adults. We hope these findings lead to improved screening and management of these conditions, inform initiatives to improve access to healthcare, and guide future funding.


Subject(s)
Asthma , Autistic Disorder , Adult , Humans , Prevalence , Autistic Disorder/epidemiology , Cross-Sectional Studies , Retrospective Studies
4.
Autism ; : 13623613231206421, 2023 Oct 27.
Article in English | MEDLINE | ID: mdl-37886796

ABSTRACT

LAY ABSTRACT: Diabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18-22, 23-27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults' individual needs are important for future study to promote positive diabetes outcomes for autistic adults.

5.
Am J Sports Med ; 51(11): 2908-2917, 2023 09.
Article in English | MEDLINE | ID: mdl-37551704

ABSTRACT

BACKGROUND: The traditional index of return-to-sport (RTS) readiness after anterior cruciate ligament reconstruction (ACLR) is the achievement of physical competence criteria. Emerging research indicates that psychological response and self-perceptions of physical competence may be critical mechanisms for successful RTS among young athletes. HYPOTHESIS: Young athletes with higher actual physical competence (APC) and perceived physical competence (PPC) will demonstrate a more positive psychological response at the time of RTS after ACLR. STUDY DESIGN: Cross-sectional study; Level of evidence, 3. METHODS: A total of 41 young athletes after primary ACLR completed testing within 8 weeks of medical clearance to RTS. APC was measured with isokinetic knee extension strength, single-limb crossover hop for distance, and the Knee injury and Osteoarthritis Outcome Score. PPC was measured with the Athletic Competence subscale of the Self-Perception Profile. Criteria for APC and PPC were based on established age- and activity-relevant cutoff scores. Different constructs of psychological response were assessed with the adapted Sport Motivation Scale, Brief Resilience Scale, and Anterior Cruciate Ligament Return to Sport after Injury (ACL-RSI) total and subscale scores (Emotions, Confidence, and Risk Appraisal). Multiple linear regression analyses were used to determine differences in measures of psychological response based on achievement of APC and PPC, while adjusting for age and sex. RESULTS: Of the 41 participants, 10 (24.4%) met all criteria for APC and 22 (53.7%) met the PPC criteria. The regression models estimating the ACL-RSI score (P < .001; adjusted R2 = 0.331), ACL-RSI Emotions score (P < .001; adjusted R2 = 0.427), and ACL-RSI Risk Appraisal score (P = .013; adjusted R2 = 0.212) were statistically significant. Although APC was not associated with any measure of psychological response, meeting PPC criteria, younger age, and male sex were found to be associated with a more positive psychological readiness to RTS, but not with motivation or resilience. CONCLUSION: Meeting PPC criteria was associated with higher psychological readiness to RTS among young athletes after ACLR, while meeting APC criteria was not associated with any construct of psychological response.


Subject(s)
Anterior Cruciate Ligament Injuries , Sports , Humans , Male , Return to Sport/psychology , Cross-Sectional Studies , Anterior Cruciate Ligament Injuries/surgery , Anterior Cruciate Ligament Injuries/psychology , Athletes/psychology , Muscle Strength/physiology
6.
JAMA Otolaryngol Head Neck Surg ; 149(8): 662-669, 2023 08 01.
Article in English | MEDLINE | ID: mdl-37318794

ABSTRACT

Importance: It is essential to measure an individual patient's baseline and follow-up abilities to demonstrate changes in clinical outcomes over time. Inherent in this strategy is interpreting whether the measured change is clinically significant and beyond measurement error. Conditional minimal detectable change (cMDC) values are widely used in many disciplines but have rarely been established for outcome measures in otolaryngology or hearing research, and never in cochlear implantation. Objective: To determine cMDC values for the Cochlear Implant Quality of Life-35 (CIQOL-35) Profile instrument to enhance our understanding of the initial and ongoing changes in functional abilities from cochlear implants (CIs). Design, Setting, and Participants: Item response theory analyses of responses from a multi-institutional cohort of 705 CI users at a tertiary CI center were used to derive standard error (SE) values for each possible CIQOL-35 domain score. Using an iterative approach, these SE values were used to calculate cMDC values for every possible pre-CI and post-CI domain score combination. We then compared pre-CI to 12-month post-CI CIQOL-35 domains scores in an independent cohort of 65 adult CI users to determine whether the measured change exceeded error to be clinically significant. The analysis took place on December 14, 2022. Interventions: The CIQOL-35 Profile instrument and cochlear implantation. Results: The cMDC values were smaller for the communication domain, and global measure and cMDC values for all domains were larger at the extremes of the measurement scale. Overall, 60 CI users (92.3%) demonstrated improvement beyond cMDC at 12 months post-CI for at least 1 CIQOL-35 domain, and no patients' scores declined beyond cMDC for any domain. The percentage of CI users demonstrating improvement beyond cMDC varied by domain, with communication (53 [81.5%]) showing the largest number of CI users improving, followed by global (42 [64.6%]) and entertainment (40 [60.9%]). In general, CI users who demonstrated improvement in CIQOL-35 domains had greater improvement in speech recognition scores than patients who did not, but the strength and significance of these associations greatly varied by domain and speech material. Conclusions and Relevance: This multistep cohort study found that cMDC values for the CIQOL-35 Profile provided personalized thresholds for detecting real changes in patient self-reported functional abilities over time across multiple domains, which may inform clinical decision-making. Moreover, these longitudinal results reveal the domains with more or less improvement, which may aid in patient counseling.


Subject(s)
Cochlear Implantation , Cochlear Implants , Speech Perception , Adult , Humans , Cohort Studies , Quality of Life , Speech Perception/physiology , Treatment Outcome
7.
JAMA Surg ; 158(4): 386-392, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36790769

ABSTRACT

Importance: Improving equity in organ transplant access for people with intellectual and developmental disabilities (IDD) is a topic of social discourse in mainstream media, state legislation, and national legislation. However, few studies have compared evaluation rates, transplant rates, and outcomes among adults with and without IDD. Objective: To compare rates of kidney transplant and transplant-specific outcomes between propensity-score matched groups of adults with end-stage kidney disease (ESKD [also referred to as end-stage renal disease (ESRD)]) with and without co-occurring IDD. Design, Setting, and Participants: This retrospective cohort study included all Medicare inpatient and outpatient standard analytical files from 2013 through 2020. A total of 1 413 655 adult Medicare beneficiaries with ESKD were identified. Propensity-score matching was used to balance cohorts based on age, sex, race, follow-up duration, and Charlson Comorbidity Index. The matched cohorts consisted of 21 384 adults with ESKD (10 692 of whom had IDD) and 1258 kidney transplant recipients (629 of whom had IDD). Data were analyzed between June 1, 2022, and August 1, 2022. Exposure: IDD. Main Outcomes and Measures: Evaluation for kidney transplant, receipt of kidney transplant, perioperative complications, readmission, mortality, graft rejection, and graft failure. Results: Of the 21 384 propensity-score matched adults with ESKD, the median (IQR) age was 55 (43-65) years, 39.2% were male, 27.4% were Black, 64.1% were White, and 8.5% identified as another race or ethnicity. After propensity score matching within the ESKD cohort, 633 patients with IDD (5.9%) received a kidney transplant compared with 1367 of adults without IDD (12.8%). Adults with IDD were 54% less likely than matched peers without IDD to be evaluated for transplant (odds ratio, 0.46; 95% CI, 0.43-0.50) and 62% less likely to receive a kidney transplant (odds ratio, 0.38; 95% CI, 0.34-0.42). Among matched cohorts of kidney transplant recipients, rates of perioperative complications, readmission, and graft failure were similar for adults with and without IDD. Conclusions and Relevance: Using the largest cohort of adult kidney transplant recipients with IDD to date, the study team found that rates of evaluation and transplant were lower despite yielding equivalent outcomes. These data support consideration of adults with IDD for kidney transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.


Subject(s)
Kidney Failure, Chronic , Kidney Transplantation , Organ Transplantation , Aged , Child , Adult , Humans , Male , United States/epidemiology , Middle Aged , Female , Retrospective Studies , Developmental Disabilities/epidemiology , Medicare , Kidney Failure, Chronic/epidemiology , Kidney Failure, Chronic/surgery
8.
Article in English | MEDLINE | ID: mdl-36685335

ABSTRACT

Background: An emerging body of evidence suggests that autistic people are at greater risk for mortality than non-autistic people. Yet, relatively little is known about mortality rates among autistic people during older adulthood (i.e., age 65 or older). Methods: We examined 5-year mortality among a national US sample of Medicare-enrolled autistic (n=3,308) and non-autistic (n=33,080) adults aged 65 or older. Results: Autistic older adults had 2.87 times greater rate of mortality (95% CI=2.61-3.07) than non-autistic older adults. Among decedents (39.6% of autistic and 15.1% of non-autistic older adults), the median age of death was 72 years (IQR=69-78) for autistic and 75 years (IQR=70-83) for non-autistic older adults. Among autistic older adults, those with intellectual disability had 1.57 times greater rate of mortality (95% CI=1.41-1.76) than those without, and males had 1.27 times greater rate of mortality (95% CI=1.12-1.43) than females. Conclusions: Many trends regarding mortality observed in younger samples of autistic people were also observed in our study. However, we found only a three-year difference in median age at death between autistic and non-autistic decedents, which is a much smaller disparity than reported in some other studies. This potentially suggests that when autistic people live to the age of 65, they may live to a more similar age as non-autistic peers.

9.
Autism ; 27(4): 1132-1141, 2023 05.
Article in English | MEDLINE | ID: mdl-36325713

ABSTRACT

LAY ABSTRACT: Real-time telehealth visits, called "virtual visits," are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Telemedicine , Humans , Adult , Autistic Disorder/therapy , Autism Spectrum Disorder/therapy , Anxiety , Family
10.
J Autism Dev Disord ; 53(3): 1285-1289, 2023 Mar.
Article in English | MEDLINE | ID: mdl-35128588

ABSTRACT

We examined how sharing autism research articles via social and news media was associated with citations and downloads. We included articles published in 2019 from three autism-focused journals. Every 10 Twitter shares yielded a 4.4% increase in article downloads and 5.2% increase in citations. Articles with at least one Facebook post had 23.3% more downloads than those without. Articles with at least one news story had 56.9% more downloads and 39.3% more citations than those without. Descriptive analysis indicated the most shared, downloaded, and cited articles focused largely on treatments or interventions. Autism researchers should continue sharing articles via Twitter and news media because it increases the reach of their work and may better engage research and autism community members.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Social Media , Humans , Communication , Mass Media
11.
Laryngoscope ; 132 Suppl 12: S1-S13, 2022 11.
Article in English | MEDLINE | ID: mdl-36082873

ABSTRACT

OBJECTIVES: The purpose of this study is to develop and implement a functional staging system using the Cochlear Implant Quality of Life (CIQOL) framework. The CIQOL-35 Profile was developed and validated following a rigorous research design and found to be more comprehensive and psychometrically sound than previous patient-reported outcome measures (PROMs) applied to adult CI users. However, interpreting the CIQOL-35 Profile (and all PROMs) relative to real-world functioning remains difficult for patients and clinicians, which limits the capacity of PROMs to direct clinical care. To address this limitation, a functional staging system based on PROM scores was developed to provide detailed descriptions of patients' self-reported abilities (clinical vignettes) without sacrificing the inherent value of the psychometrically derived scores. The current study (1) creates an evidence-based CIQOL functional staging system using advanced psychometric techniques, (2) confirms the clarity and meaningfulness of the staging system with patients, and (3) implements the staging system to measure CIQOL stage progression using data from a longitudinal study design. METHODS: Item response theory (IRT) analyses of CIQOL-35 Profile data from 705 experienced adult CI users and expert opinion were used to determine the cut-scores that separated adjacent stages for the six CIQOL-35 domains (communication, emotional, entertainment, environment, listening effort, and social). The research team then created clinical vignettes based on item response patterns for each stage. Semi-structured key informant interviews were conducted with 10 adult CI users to determine the clarity and meaningfulness of the CIQOL stages and associated clinical vignettes. Finally, we prospectively collected CIQOL-35 Profile scores from 42 CI users prior to cochlear implantation and then at 3- and 6-months post-CI activation to measure CIQOL stage progression. RESULTS: Psychometric analyses identified five statistically distinct stages for the communication domain and three stages for all other domains. Using IRT analysis results for guidance, research team members independently identified the cut-scores that represented transitions between the functional stages for each domain with excellent agreement (κ = 0.98 [95% confidence interval 0.96-0.99]). Next, the key informant interviews revealed that CI users found the clinical vignettes to be clear and only minor changes were required. Participants also agreed that stage progression represented meaningful improvements in functional abilities. Finally, 88.1% of 42 patients in the prospective cohort (n = 37) improved from pre-CI functional stage by at least one functional stage in one or more domains. The communication domain had the greatest number of patients improve by one or more stages (59.5%) and the social domain the fewest (25.6%). There was also a trend for less improvement at 3- and 6-months post-CI activation for patients at higher pre-CI functional stages, even though higher stages were achievable. CONCLUSION: The new CIQOL functional staging system provides an evidence-based understanding of the real-world functional abilities of adult CI users from pre-CI to 3- to 6-months post-CI activation across multiple domains. In addition, study results provide the proportion of CI users in each stage at each timepoint. Results can be used during discussions of expectations with potential CI users to provide enhanced insight regarding realistic outcomes and the anticipated timing for improvements. The use of the CIQOL functional staging system also presents an opportunity to develop individualized goal-based rehabilitation strategies that target barriers to stage advancement faced by CI users. LEVEL OF EVIDENCE: 2 Laryngoscope, 132:S1-S13, 2022.


Subject(s)
Cochlear Implantation , Cochlear Implants , Adult , Humans , Longitudinal Studies , Prospective Studies , Quality of Life
12.
Curr Psychiatry Rep ; 24(10): 565-571, 2022 10.
Article in English | MEDLINE | ID: mdl-35969335

ABSTRACT

PURPOSE OF REVIEW: We reviewed the literature from 2017 to 2022 on autistic adults' use of mental healthcare and barriers to care. To encourage immediate improvement in mental healthcare, we provide five strategies mental health providers can use to better care for autistic adults. RECENT FINDINGS: Most autistic adults use mental healthcare and use it more often than non-autistic adults. Autistic adults' experiences with mental healthcare are characterized by (1) lack of providers knowledgeable about autism, (2) use of treatments that may not be accommodating to individual needs, and (3) difficulty navigating the complex healthcare system. These barriers contribute to prevalent unmet needs for mental healthcare. Autistic adults use mental healthcare frequently but have unmet mental health needs. As necessary systemic changes develop, providers can begin immediately to better care for autistic adults by learning about their needs and taking personalized care approaches to meet those needs.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Mental Health Services , Adult , Autism Spectrum Disorder/psychology , Autism Spectrum Disorder/therapy , Autistic Disorder/psychology , Health Services Accessibility , Humans
13.
JAMA Otolaryngol Head Neck Surg ; 148(9): 870-878, 2022 09 01.
Article in English | MEDLINE | ID: mdl-35951334

ABSTRACT

Importance: Previous research suggests that clinicians view realistic patient expectations as the most important nonaudiological factor in the decision to proceed with a cochlear implant (CI). However, clinicians have few data to determine whether patients' outcome expectations are realistic. Objective: To address this unmet clinical need through the development and psychometric analysis of a new patient-reported outcome measure, the CI Quality of Life (CIQOL) Expectations. Design, Setting, and Participants: This cross-sectional study was conducted at a tertiary CI center from February 26, 2020, to August 31, 2021. First, a team comprising 2 CI audiologists, a CI surgeon, a hearing scientist, and 2 psychometricians with experience in instrument development converted all items from the CIQOL-35 Profile instrument into statements reflecting expected outcomes. Then, cognitive interviews with 20 potential CI users assessed the clarity and comprehensiveness of the new instrument. Next, responses to the CIQOL-Expectations instrument for 131 potential adult CI candidates were psychometrically analyzed using confirmatory factor analysis and item response theory. Finally, degree to which patient expectations changed from before to after and their CI evaluation appointments was measured. Intervention: The CIQOL-Expectations instrument. Results: Of 178 participants, 85 (47.8%) were female, and there was 1 (0.6%) Asian, 26 (14.6%) Black or African American, 1 (0.6%) Latinx, and 150 (84.3%) White individuals. No major content or grammar changes were identified during the cognitive interviews. Overall, all CIQOL domains demonstrated adequate to strong psychometric properties. Several domains did not meet all a priori established indicators of model fit or ability to separate CI users based on response patterns, but all met most indicators. Potential CI users demonstrated the highest mean (SD) expectation scores for the environment (70.2 [20.8]) and social (68.4 [18.0]) domains. In addition, the entertainment (20 [15.3%]) and environment (31 [24.4%]) domains had the highest percentage of patients with expectation scores of 100. Yet, normative CIQOL-35 Profile data from experienced CI users suggested few patients obtain this high degree of functional benefit after implant. Conclusions and Relevance: The results of this cross-sectional study suggest that the CIQOL-Expectations instrument may provide an opportunity to assess potential CI users' expected outcomes using modification of an established CIQOL instrument and a patient-centered framework. The included items and domains reflect real-world functional abilities valued by CI users and may provide opportunities for an evidence-based shared decision-making approach to the CI evaluation process. With this instrument, clinicians can compare individual patients' pre-CI outcome expectations with established normative data and provide appropriate counseling.


Subject(s)
Cochlear Implantation , Cochlear Implants , Adult , Cross-Sectional Studies , Female , Humans , Male , Motivation , Quality of Life
14.
Otol Neurotol ; 43(7): 797-802, 2022 08 01.
Article in English | MEDLINE | ID: mdl-35878634

ABSTRACT

OBJECTIVE: Although adult cochlear implant (CI) outcomes have primarily focused on speech recognition scores, the rigorous development of a CI-specific patient-reported outcome measure provides an opportunity for a more comprehensive and ecologically valid approach to measure the real-world functional abilities of adult CI users. Here, we report for the first time normative Cochlear Implant Quality of Life (CIQOL)-35 Profile and global scores and variance for a large, multi-institutional sample of adult CI users. STUDY DESIGN: Cross-sectional study design. SETTING: CI centers in the United States. PATIENTS: Seven hundred five adults with bilateral moderate to profound hearing loss with at least 1 year of CI use. INTERVENTIONS: Cochlear implantation. MAIN OUTCOME MEASURES: CIQOL-35 Profile and CIQOL-10 Global scores. RESULTS: During the development of the CIQOL instruments, 1,000 CI users from all regions of the United States were invited to participate in studies. Of these, 705 (70.5%) completed all portions of the study, and their data are reported here. Mean CIQOL domain scores were highest (indicating better function) for the emotional and social domains and lowest for listening effort. The entertainment and social domains demonstrated the widest distribution of scores and largest standard deviations, indicating greatest variability in function. Overall, there were minimal ceiling and floor effects for all domains. CONCLUSION: Normative scores from a large sample of experienced adult CI users are consistent with clinical observations, showing large differences in functional abilities and large variability. Normative CIQOL data for adult CI users have the potential to enhance preoperative discussions with CI candidates, improve post-CI activation monitoring, and establish standards for CI centers.


Subject(s)
Cochlear Implantation , Cochlear Implants , Speech Perception , Adult , Cross-Sectional Studies , Humans , Quality of Life , Speech Perception/physiology
15.
Front Immunol ; 13: 879600, 2022.
Article in English | MEDLINE | ID: mdl-35720418

ABSTRACT

Background: Transgender women (TW) are at increased risk for both human immunodeficiency virus (HIV) and cardiovascular disease (CVD). Antiretroviral therapy-treated HIV has been associated with a two-fold increased risk of CVD, potentially due to dysregulated Toll-like receptor (TLR)-induced immune activation. Use of estrogens in feminizing hormone therapy (FHT) may enhance inflammatory responses and the risk of cardiovascular mortality in TW. Despite this, the immunomodulatory effects of estrogen use in TW with HIV have been inadequately explored. Methods: As an in vitro model for FHT, cryopreserved PBMCs (cryoPBMCs) from HIV negative (HIV-), HIV+ ART-suppressed (HIV+SP), and HIV+ ART-unsuppressed (HIV+USP) cisgender men were cultured overnight in the presence of 17-ß estradiol or 17-α ethinylestradiol with and without the TLR4 agonist LPS or the TLR8 agonist ssPolyU. Monocyte activation (CD69, HLA-DR, CD38) was assessed by flow cytometry. Cytokine levels (IL-6, TNF-α, IL-1ß, and IL-10) were measured in cell culture supernatants by Legendplex. Levels of phosphorylated TLR signaling molecules (JNK, MAPK p38) were assessed by Phosflow. Plasma levels of immune activation biomarkers (LPS-binding protein, monocyte activation markers sCD14 and sCD163, and inflammatory molecules IL-6 and TNF-α receptor I) were measured by ELISA. Results: PBMCs from people with HIV (PWH) produced greater levels of inflammatory cytokines following exposure to LPS or ssPolyU compared to levels from cells of HIV- individuals. While estrogen exposure alone induced mild changes in immune activation, LPS-induced TLR4 activation was elevated with estrogen in cisgender men (CM) with HIV, increasing monocyte activation and inflammatory cytokine production (IL-6, TNF-α). Interestingly, testosterone inhibited LPS-induced cytokine production in CM regardless of HIV status. Plasma markers of immune activation and microbial translocation (e.g., sCD14, sCD163, LPS-binding protein) were generally higher in PWH compared to HIV- CM, and these markers were positively associated with in vitro responsiveness to estrogen and LPS in CM with HIV. Conclusions: Our in vitro data suggest that estrogen exposure may enhance innate immune activation in PWH. Further examination is needed to fully understand the complex interactions of FHT, HIV, and CVD in TW, and determine optimal FHT regimens or supplementary treatments aimed at reducing excess immune activation.


Subject(s)
Estrogens , HIV Infections , Toll-Like Receptor 4 , Transgender Persons , Cardiovascular Diseases/immunology , Cardiovascular Diseases/pathology , Cardiovascular Diseases/virology , Cytokines/metabolism , Estrogens/adverse effects , Estrogens/pharmacology , Female , HIV Infections/drug therapy , HIV Infections/immunology , HIV Infections/virology , Humans , Interleukin-6/immunology , Lipopolysaccharide Receptors/immunology , Lipopolysaccharides/pharmacology , Male , Toll-Like Receptor 4/immunology , Tumor Necrosis Factor-alpha/immunology
17.
Curr Sports Med Rep ; 21(1): 28-33, 2022 Jan 01.
Article in English | MEDLINE | ID: mdl-35018896

ABSTRACT

ABSTRACT: We reviewed charts of 14,446 sports medicine patients, children aged 5 to 18 years, over a 3-year period to determine the discriminant validity of Exercise Vital Sign (EVS) questions. A logistic regression analyzed factors related to any moderate to vigorous physical activity (MVPA). A linear regression analyzed factors related to amount of MVPA for those who participated in any weekly MVPA. Overall, 48% of children reported meeting physical activity guidelines for 420 min·wk-1. Overall, children reported 400.36 ± 280.04 min·wk-1 of MVPA. Those with depression had significantly less MVPA than those without (95% confidence interval [CI], -96.65 to -26.31). Girls had significantly less MVPA than boys (95% CI, -59.15 to -40.31). Overweight and obese children reported less MVPA compared with normal weight children (95% CIs, -42.65 to -17.29 and -91.61 to -65.50, respectively). EVS demonstrates strong discriminant validity to detect differences between groups as a function of sex, body mass index, and depression.


Subject(s)
Pediatric Obesity , Body Mass Index , Child , Exercise , Female , Humans , Male , Overweight , Pediatric Obesity/diagnosis , Vital Signs
18.
J Gen Intern Med ; 37(10): 2413-2419, 2022 08.
Article in English | MEDLINE | ID: mdl-34990000

ABSTRACT

BACKGROUND: We previously found that autistic adults who received care through a primary care embedded specialized clinic, called the Center for Autism Services and Transition (CAST), had higher satisfaction, continuity of care, and preventive care use than national samples of autistic adults. OBJECTIVE: Examine the impact of CAST on healthcare utilization and expenditures. DESIGN: Retrospective study of medical billing data. SAMPLE: CAST patients (N = 490) were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: We quantified expenditures and utilization for primary care; emergency department (ED) visits; inpatient hospitalizations; mental health admissions; and outpatient visits. KEY RESULTS: CAST patients had the highest primary care utilization and expenditures. However, CAST patients had significantly lower expenditures than Medicare-enrolled autistic adults for mental health admissions ($1074 vs $1903), outpatient visits ($1671 vs $2979), and total expenditures ($5893 vs $6987), as well as 57% fewer inpatient hospitalizations. Compared to privately insured autistic adults, CAST patients had significantly lower expenditures for mental health admissions ($1074 vs $1362), inpatient hospitalizations ($3851 vs $4513), and outpatient visits ($1671 vs $6070), as well as 16% fewer inpatient hospitalizations, 24% fewer ED visits, and 50% fewer outpatient visits. On average, CAST patients had more ED visits, mental health admissions, and outpatient visits than Medicare-enrolled autistic adults and more mental health admissions than privately insured autistic adults. CONCLUSIONS: Although CAST patients had greater primary care utilization and expenditures, our findings suggest embedding specialized clinics within broader primary care settings could be an alternative to current standards of care and may reduce expenditures and healthcare utilization in other areas, particularly relative to standard care for privately insured autistic adults.


Subject(s)
Autistic Disorder , Health Expenditures , Adult , Aged , Autistic Disorder/epidemiology , Autistic Disorder/therapy , Female , Hospitalization , Humans , Male , Medicare , Patient Acceptance of Health Care , Primary Health Care , Retrospective Studies , United States/epidemiology , Young Adult
19.
Am J Occup Ther ; 76(1)2022 Jan 01.
Article in English | MEDLINE | ID: mdl-35037945

ABSTRACT

Health services research focuses on access, quality, and cost-effectiveness of care. As a result of increasing emphasis on value-based reimbursement models, conducting health services research to demonstrate the value of occupational therapy is timely. This special issue serves to highlight health services research relevant to occupational therapy practice. Articles included in this special issue describe (1) clients' access to and use of occupational therapy, (2) the effects of occupational therapy on important quality-of-care indicators and client outcomes, and (3) the value of occupational therapy services through the lens of cost-effectiveness. This special issue illustrates the state of health services research in the field of occupational therapy and reveals key insights to advance occupational therapy practice using health services research.


Subject(s)
Occupational Therapy , Cost-Benefit Analysis , Health Services Research , Humans
20.
J Autism Dev Disord ; 52(9): 4035-4043, 2022 Sep.
Article in English | MEDLINE | ID: mdl-34524584

ABSTRACT

Obesity is linked with health and psychosocial outcomes among many populations. However, it is unclear the extent to which obesity is linked with these outcomes among autistic adults. We searched seven research databases for articles examining the association between obesity and autistic adults' health and psychosocial outcomes. Three studies found that obesity was associated with health outcomes, including: in-hospital mortality, risk of type II diabetes, cardiovascular disease, and number of co-occurring medical conditions. One study found no significant association between autism diagnosis, mental health conditions, and body mass index. Obesity increases the risk of in-hospital mortality and some chronic conditions among autistic adults, highlighting the need for clinicians trained to promote weight management among autistic adults.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Diabetes Mellitus, Type 2 , Adult , Autism Spectrum Disorder/complications , Autistic Disorder/complications , Body Mass Index , Diabetes Mellitus, Type 2/complications , Humans , Obesity/complications , Obesity/epidemiology
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