"I'm dealing with a health care system that doesn't get it": Barriers and facilitators to inclusive healthcare for autistic adults.

LAY ABSTRACT: Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

Building Community and Identity Online: A Content Analysis of Highly Viewed #Autism TikTok Videos.

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.

Two Patients Experience Same-Day Analgesic Effect of Methadone on Trigeminal Neuralgia Secondary to Malignancy: A Case Report.

Trigeminal neuralgia (TN) secondary to malignancy leads to significant distress and subsequently impacts a patient's quality of life. Use of methadone as a first-line opioid analgesic in this subset of oncology patients is uncommon and is rarely initiated after traditional first-line therapies have failed. We report two patients with TN secondary to tumor burden who experienced significant analgesia within 24 hours of methadone initiation.

Lucid Dreams Associated with Pregabalin: Implications for Clinical Practice.

Here, we describe a case of a patient with multiple myeloma who reported symptoms of lucid dreams. This patient was taking methadone for neoplasm related pain. The patient was also taking pregabalin which was initially started at dosing of 50 mg taken orally three times a day. Five days after initiation of pregabalin, the dosing was increased to 100 mg taken orally three times daily. The patient developed lucid dreams during a hospital stay and methadone was initially thought to be the cause of her lucid dreams. Methadone dosing was decreased with no success, and her lucid dreams persisted. On the patient's thirteenth day of hospital admission, the pregabalin dose was decreased from 100 mg three times a day to 75 mg twice daily. Five days later, the pregabalin was decreased from 75 mg twice daily to 50 mg twice daily. Pregabalin was continued for five more days and then discontinued. Resolution of the lucid dreams occurred following discontinuation of pregabalin. To our knowledge, this is the first reported case of an association between pregabalin and lucid dreams. Given that pregabalin is a widely used medication, we found this case to be relevant to describe this unique presentation.

Rate of cannabis use in older adults with cancer.

OBJECTIVES: Older adults with cancer are increasingly inquiring about and using cannabis. Despite this, few studies have examined cannabis use in patients with cancer aged 65 years and older as a separate group and identified characteristics associated with use. The current study sought to determine the rate of cannabis use in older adult patients with cancer and to identify demographic and clinical correlates of use. METHODS: We conducted a retrospective review of patients with cancer referred for specialised symptom management between January 2014 and May 2017 who underwent routine urine drug testing for tetrahydrocannabinol as part of their initial clinic visit. RESULTS: Approximately 8% (n=24) of patients with cancer aged 65 years and older tested positive for tetrahydrocannabinol compared with 30% (n=51) of young adults and 21% (n=154) of adults. At the univariate level, more cannabis users had lower performance status than non-users (p=0.02, Fisher's exact test). There were no other demographic and clinical characteristics significantly associated with cannabis use in older adults. CONCLUSIONS: Older adult patients made up nearly 25% (n=301) of the total sample and had a rate of cannabis use of 8%. As one of the first studies to assess cannabis use via objective testing rather than self-report, this study adds significantly to the emerging literature on cannabis use in people aged 65 years and older. Findings suggest the rate of use in older adults living with cancer is higher than that among older adults in the general population.

A potential tradeoff between feeding rate and aversive learning determines intoxication in a Caenorhabditis elegans host-pathogen system.

Despite being the first line of defense against infection, little is known about how host-pathogen interactions determine avoidance. Caenorhabditis elegans can become infected by chemoattractant-producing bacteria through ingestion. The worms can learn to associate these chemoattractants with harm through aversive learning. As a result, the worms will avoid the pathogen. Evolutionary constraints have likely shaped the attraction, intoxication and learning dynamics between bacteria and C. elegans, but these have not been explored. Using bacteria engineered to express an acylhomoserine lactone chemoattractant and a nematicidal protein, we explored how manipulating the amount of attractant produced by the bacteria affects learning and intoxication in mixed stage populations of C. elegans. We found that increasing the production rate of the chemoattractant increased the feeding rate in C. elegans, but decreased the time required for C. elegans to learn to avoid the chemoattractant. Learning generally coincided with a decreased feeding rate. We also observed that the percentage of intoxicated worms was maximized at intermediate production rates of the attractant. We propose that interactions between attractant driven feeding rate and aversive learning are likely responsible for this trend. Our results increase our understanding of behavioral avoidance in C. elegans and have implications in understanding host-pathogen dynamics that shape avoidance.

Cannabis Use in Young Adult Cancer Patients.

Background: The use of cannabis by young adult (YA) cancer patients is likely to increase as medical cannabis becomes more available. Clinically relevant data on cannabis use are needed to establish benchmarks for use, to identify patients who are more likely to use cannabis, and to assess outcomes associated with use. Objective: The current study sought to determine the rate of cannabis use in YA cancer patients ages 18 to 39, identify demographic and clinical correlates of use, and examine differences in moderate-to-severe symptoms between users and nonusers. Methods: We conducted a retrospective review of objectively measured tetrahydrocannabinol (THC), self-reported cannabis use, and cancer-related symptomatology in YA cancer patients in active treatment referred for comprehensive supportive care. Results: Approximately 30% of YA cancer patients tested positive for THC on urine drug testing. At the univariate level, cannabis users were more likely to be male, to have a lifetime history of smoking at least 100 cigarettes, and to be more recently diagnosed. Cannabis use was associated with moderate-to-severe symptomatology, including pain, nausea, lack of appetite, constipation, difficulty sleeping, and poorer overall well-being. Conclusions: YAs referred for comprehensive supportive care may be managing their cancer-related symptoms with cannabis. Further research is needed to better understand patients' perceptions of cannabis's therapeutic and adverse effects, in patients who used cannabis before diagnosis, and in patients who commenced use in response to a cancer diagnosis.

Edmonton Symptom Assessment Scale and Clinical Characteristics Associated With Cannabinoid Use in Oncology Supportive Care Outpatients.

BACKGROUND: Information about the frequency of cannabinoid use and the clinical characteristics of its users in oncology supportive care is limited. This study explored associations between cannabinoid use and cancer-related clinical characteristics in a cancer population. PATIENTS AND METHODS: This retrospective review included 332 patients who had a urine drug test (UDT) for tetrahydrocannabinol (THC) together with completion of an Edmonton Symptom Assessment Scale (ESAS) and cannabinoid history questionnaire on the same day that urine was obtained during 1 year in the supportive care clinic. RESULTS: The frequency of positive results for THC in a UDT was 22.9% (n=76). Significant statistical differences were seen between THC-positive and THC-negative patients for age (median of 52 [lower quartile, 44; upper quartile, 56] vs 58 [48; 67] years; P<.001), male sex (53.9% vs 39.5%; P=.034), and past or current cannabinoid use (65.8% vs 26.2%; P<.001). Statistical significance was observed in ESAS items between the THC-positive and THC-negative groups for pain (7 [lower quartile, 5; upper quartile; 8] vs 5 [3; 7]; P=.001), nausea (1 [0; 3] vs 0 [0; 3]; P=.049), appetite (4 [2; 7] vs 3 [0; 5.75]; P=.015), overall well-being (5.5 [4; 7] vs 5 [3; 6]; P=.002), spiritual well-being (5 [2; 6] vs 3 [1; 3]; P=.015), insomnia (7 [5; 9] vs 4 [2; 7]; P<.001), and total ESAS (52 [34; 66] vs 44 [29; 54]; P=.001). Among patients who reported current or past cannabinoid use, THC-positive patients had higher total scores and scores for pain, appetite, overall well-being, spiritual well-being, and insomnia than THC-negative patients. CONCLUSIONS: Patients with cancer receiving outpatient supportive care who had positive UDT results for THC had higher symptom severity scores for pain, nausea, appetite, overall and spiritual well-being, and insomnia compared with their THC-negative counterparts. These results highlight potential opportunities to improve palliative care.

The public and private benefit of an impure public good determines the sensitivity of bacteria to population collapse in a snowdrift game.

When cooperation is critical for survival, cheating can lead to population collapse. One mechanism of cooperation that permits the coexistence of cooperators and cheaters is an impure public good, whose public benefits are shared, but with a private benefit retained by the cooperator. It has yet to be determined how the contributions of the public and private benefit affect population survival. Using simulations and experiments with ß-lactamase-expressing bacteria, we found that for a given amount of public and private benefit, the population was most sensitive to collapse when initiated from an intermediate fraction of cooperators due to the near-concurrent collapse of the cooperator and cheater populations. We found that increasing the ratio of public to private benefit increased sensitivity to collapse. A low ratio allowed cooperators to survive on their private benefit after the public benefit could not rescue the cheaters. A high ratio allowed the cheaters to survive to high concentrations of ampicillin due to the high public benefit. However, small increases in ampicillin caused a rapid decline in the entire population as the private benefit was insufficient to allow self-rescue of the cooperators. Our findings have implications in the persistence of populations that rely on cooperation for survival.

Relationship of Cannabis Use to Patient-Reported Symptoms in Cancer Patients Seeking Supportive/Palliative Care.

Background: The use of cannabis by cancer patients has become increasingly common. With expanding access to medical cannabis, unsanctioned cannabis use is likely to increase. Despite this, the extent to which patients seeking specialized palliative or supportive care for cancer-related symptoms are actively using cannabis has not been well established. Objective: We sought to determine the extent to which patients seeking specialized symptom management were using cannabis and to compare the severity of cancer-related symptoms between users and nonusers. Methods: We conducted a retrospective review of objectively measured tetrahydrocannabinol (THC) and subjectively reported cannabis use, its demographic and clinical correlates, and patient-reported symptoms in 816 cancer patients in active treatment referred to a supportive/palliative care outpatient clinic for specialized symptom management between January 2014 and May 2017. Results: Nearly one-fifth (19.12%) tested positive for THC on urine drug testing. Users were younger, more likely to be men, single, and to have a history of cigarette smoking. Users also were likely to be more recently diagnosed and to have received radiotherapy. Certain moderate-to-severe symptoms, such as lack of appetite, shortness of breath, tiredness, difficulty sleeping, anxiety, and depression, were associated with use after accounting for sociodemographic and clinical differences between cannabis users and nonusers. Conclusions: Findings suggest patients seeking specialized symptom management are self-treating with cannabis, despite the lack of high-quality evidence for its use in palliative care. Unsanctioned use is likely to increase in cancer patients. Accurate information is urgently needed to help manage patient expectations for its use and increase understanding of risks and benefits.

Cancer and Opioids: Patient Experiences With Stigma (COPES)-A Pilot Study.

CONTEXT: Cancer-related pain is a common symptom that is often treated with opioids. However, legislation aimed at containing the opioid crisis, coupled with public fears about opioid risks, may contribute to opioid stigma in cancer patients. To our knowledge, no prior research has examined opioid stigma and stigma-related behavior in this population. OBJECTIVE: The objectives of this study were to describe opioid use, including reasons for use and overuse and underuse behavior; characterize opioid stigma; and identify potentially maladaptive stigma-related behaviors. METHODS: Participants were 125 adults undergoing active cancer treatment seen at the Moffitt Supportive Care Medicine Clinic. Patients completed a brief, anonymous questionnaire evaluating opioid use, opioid stigma, and stigma-related behaviors. RESULTS: Patients were primarily women (65%) aged 45-64 years (49%), most commonly diagnosed with breast (23%) and hematologic (15%) cancer. Among patients who reported opioid use (n = 109), the most common reason for use was pain relief (94%), followed by improved sleep (25%). A subset of patients reported using less (13%) or more (8%) opioid medication than advised. Opioid stigma was endorsed by 59/97 patients prescribed opioids (61%), including fear of addiction (36%), difficulty filling prescriptions (22%), and awkwardness communicating with providers (15%). Stigma-related behaviors were endorsed by 28 (29%) respondents prescribed opioids, with "taking less opioid medication than needed" as the most commonly endorsed behavior (20%). CONCLUSION: To our knowledge, this study provides the first evidence of opioid stigma and its consequences in cancer patients and offers potential targets for interventions aimed at reducing stigma and encouraging safe, effective opioid use.

Use of visual, acoustic, and olfactory information during embedded invertebrate foraging in brown capuchins (Cebus apella).

Experiments were conducted to investigate which sensory cues are used by brown capuchins (Cebus apella) in embedded invertebrate foraging. The importance of visual, olfactory, and acoustic cues in such foraging was determined by presenting subjects with a stimulus log modified to block out given sensory cues. Experiment 1 was designed to investigate whether subjects could locate an invertebrate embedded in wood when only visual, acoustic, or olfactory information was available. Experiments 2 and 3 were designed to investigate extractive foraging behavior when two sensory cues were provided. It was hypothesized that the combination of visual and acoustic information would be necessary for subjects to successfully locate embedded invertebrates. Results indicated that subjects' performance was most successful when both visual and acoustic information was available.