INTRODUCTION:Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi-faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities. METHODS:Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences. RESULTS/CONCLUSIONS:Using a modified social-ecological model, this study found that social-structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD. PATIENT OR PUBLIC CONTRIBUTION:Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.

Objectives The aims of the study were to assess the effects of breakthrough carcinoid syndrome symptoms on well-being in neuroendocrine tumor (NET) patients insufficiently controlled on long-acting somatostatin analog (SSA) and to assess patient experience with treatment options, physician communication, and disease information sources. Methods This study surveyed US NET patients from 2 online communities, experiencing at least one symptom, by utilizing a 64-item questionnaire. Results One hundred patients participated: 73% female, 75% age 56 to 75 years, and 93% White. Primary tumor distribution was as follows: gastrointestinal NET (n = 55), pancreatic NET (n = 33), lung NET (n = 11), and other NET (n = 13). All patients were actively treated with one long-acting SSA and experiencing breakthrough symptoms: diarrhea, flushing, or other (13% experienced one, 30% two, 57% greater than two). More than one third of treated patients experienced carcinoid-related symptoms daily. Sixty percent of respondents reported not having short-acting “rescue” treatment available, impacting well-being though anxiety or depression (45%), trouble exercising (65%), sleeping (57%), employment (54%), and maintaining friendships (43%). Conclusions Breakthrough symptoms remain an unmet need, even in treated patients with NETs. Though still relying on physicians, NET patients are now also using the Internet. Improved awareness of optimal SSA use may improve syndrome control.

Background Individuals with comorbid conditions have been disproportionately affected by COVID-19. Since regulatory trials of COVID-19 vaccines excluded those with immunocompromising conditions, few patients with cancer and autoimmune diseases were enrolled. With limited vaccine safety data available, vulnerable populations may have conflicted vaccine attitudes. Objective We assessed the prevalence and independent predictors of COVID-19 vaccine hesitancy and acceptance among individuals with serious comorbidities and assessed self-reported side effects among those who had been vaccinated. Methods We conducted a cross-sectional, 55-item, online survey, fielded January 15, 2021 through February 22, 2021, among a random sample of members of Inspire, an online health community of over 2.2 million individuals with comorbid conditions. Multivariable regression analysis was utilized to determine factors independently associated with vaccine hesitancy and acceptance. Results Of the 996,500 members of the Inspire health community invited to participate, responses were received from 21,943 individuals (2.2%). Respondents resided in 123 countries (United States: 16,277/21,943, 74.2%), had a median age range of 56-65 years, were highly educated (college or postgraduate degree: 10,198/17,298, 58.9%), and had diverse political leanings. All respondents self-reported at least one comorbidity: cancer, 27.3% (5459/19,980); autoimmune diseases, 23.2% (4946/21,294); chronic lung diseases: 35.4% (7544/21,294). COVID-19 vaccine hesitancy was identified in 18.6% (3960/21,294), with 10.3% (2190/21,294) declaring that they would not, 3.5% (742/21,294) stating that they probably would not, and 4.8% (1028/21,294) not sure whether they would agree to be vaccinated. Hesitancy was expressed by the following patients: cancer, 13.4% (731/5459); autoimmune diseases, 19.4% (962/4947); chronic lung diseases: 17.8% (1344/7544). Positive predictors of vaccine acceptance included routine influenza vaccination (odds ratio [OR] 1.53), trust in responsible vaccine development (OR 14.04), residing in the United States (OR 1.31), and never smoked (OR 1.06). Hesitancy increased with a history of prior COVID-19 (OR 0.86), conservative political leaning (OR 0.93), younger age (OR 0.83), and lower education level (OR 0.90). One-quarter (5501/21,294, 25.8%) had received at least one COVID-19 vaccine injection, and 6.5% (1390/21,294) completed a 2-dose series. Following the first injection, 69.0% (3796/5501) self-reported local reactions, and 40.0% (2200/5501) self-reported systemic reactions, which increased following the second injection to 77.0% (1070/1390) and 67.0% (931/1390), respectively. Conclusions In this survey of individuals with serious comorbid conditions, significant vaccine hesitancy remained. Assumptions that the most vulnerable would automatically accept COVID-19 vaccination are erroneous and thus call for health care team members to initiate discussions focusing on the impact of the vaccine on an individual’s underlying condition. Early self-reported side effect experiences among those who had already been vaccinated, as expressed by our population, should be reassuring and might be utilized to alleviate vaccine fears. Health care–related social media forums that rapidly disseminate accurate information about the COVID-19 vaccine may play an important role.

1531 Background: Vaccines are a major step towards control of the COVID-19 pandemic. Estimates from multiple surveys of the general public indicate that 40 to 60% plan to be vaccinated, with some data suggesting that uptake differs by political leanings. The views of people with cancer on COVID-19 vaccination have not been reported. We report survey results of people with cancer, evaluating intent and attitudes toward COVID-19 vaccinations. Methods: An online survey included self-identified patients with cancer, ≥18 years old, in the Inspire Online Community (www.inspire.com). Invitation was restricted to only members of Inspire’s cancer support groups who agreed to be contacted for research. Quantitative data were summarized with descriptive statistics. Data were analyzed by chi-square, ANOVA, and post hoc Tamhane’ T2 testing. Results: 750 responded with the most common cancers represented being prostate (30%), thyroid (24%) ovarian (20%), bladder (8%) and breast (4%). 44% were between 46 and 65 years old and 48% were over 65. Of these, 38% reported being on active treatment. The majority were white (91%), female (56%) and had a bachelor’s degree or higher (72%). Respondents represented the South (38%), West (28%), Midwest (20%), and Northeast (18%). Nearly half of respondents lived in a suburb near a large city. Almost 40% reported an annual income of > $100,000 and 13% reported income < $50,000/year. The proportion that would “definitely” or “most probably” get the COVID-19 vaccine was 80%, with significantly greater interest in people with prostate (85%), bladder (82%) and ovarian cancer (81%). Those with breast cancer reported the highest levels of being uncertain (23%) and 30% of those with thyroid cancer reported they would “probably” or “definitely” not get vaccinated. Older age, male sex, and college graduates were significantly more likely to get vaccinated. Concerns about side effects were reported by 54%, with younger patients significantly more concerned than those 66 years and older. Of 158 participants who listed other reasons they would not get vaccinated, 23% were concerned that the research and development was rushed and 11% worried about how it might interact with a compromised immune system. Using the 2020 Electoral College map to indicate political leaning at the state level, there was no significant difference in vaccine uptake, although significantly more people from blue states agreed that vaccination was the best defense against COVID-19 compared to those from red states (67 vs 33%, p <.05). Conclusions: People with cancer are much more interested in COVID-19 vaccination compared to the general public. Despite this, a large percentage of people with cancer reported distrust in either the government and/or the healthcare industry. Although vaccine attitudes tracked with political leanings at the state level, intention to get vaccinated did not.

2621 Background: The rapid development of safe and effective vaccines against SARS-CoV-2 may stem the global COVID-19 pandemic. However, since individuals with cancer were under-represented during clinical vaccine trials, experience with COVID-19 vaccines among cancer patients is limited. Methods: An internet-based survey was conducted January 15 - February 10, 2021 among members of the Inspire online health community. The 63-item survey was emailed to members of the Inspire community who had opted-in for research. Results: Out of 19,152 respondents, 4895 (25%) self-reported a cancer diagnosis. Of these, 1337 (27%) were receiving active therapy. Cancer respondents were 66% female, 77% white, 44% college educated, with a median age range 55-65 years. 88% had solid tumors and 12% hematologic malignancies. 241 (5%) had prior COVID-19 and 148 (3%) thought they had had it but were not tested. Among cancer patients with COVID-19 approximately 30% reported ongoing late symptoms. At the time of survey, 1335 (27%) cancer patients had received a COVID-19 vaccine (Moderna 51% Pfizer-BioNTech 46%, Astra-Zeneca 3%, Other/unknown >1%). Following the first injection, 63% had local adverse events (AEs): injection site pain (51%), swelling (8%), redness (6%), and itching (4%). 34% reported systemic AEs including myalgia (32%), fatigue (18%), headache (12%), joint pain (5%), and chills (5%). 199 (15%) had received the second (booster) vaccination. 76% reported local AEs including pain (69%), swelling (14%), itching (8%), and redness (7%). 67% reported systemic AEs including fatigue (49%), myalgia (30%), headache (29%), chills (23%), fever (16%), joint pain (15%), and nausea (12%). AEs were comparable to the clinical trial results obtained from the general population (fda.gov/media/144245/download & 144434/download). Conclusions: In this internet-based survey drawn from the Inspire online health community 1335 cancer patients reported receiving COVID-19 vaccinations. By self-report the vaccines were well tolerated with AEs patterns mimicking clinical trial results conducted in the general population. These safety results should be reassuring to cancer patients although attention to COVID-19 vaccine efficacy is required (and will be studied during follow-up surveys).[Table: see text]

Background: In drug development clinical trials, there is a need for balance between restricting variables by setting eligibility criteria and representing the broader patient population that may use a product once it is approved. Similarly, although recent policy initiatives focusing on the inclusion of historically underrepresented groups are being implemented, barriers still remain. These limitations of clinical trials may mask potential product benefits and side effects. To bridge these gaps, online communication in health communities may serve as an additional population signal for drug side effects. Objective: The aim of this study was to employ a nontraditional dataset to identify drug side-effect signals. The study was designed to apply both natural language processing (NLP) technology and hands-on linguistic analysis to a set of online posts from known statin users to (1) identify any underlying crossover between the use of statins and impairment of memory or cognition and (2) obtain patient lexicon in their descriptions of experiences with statin medications and memory changes. Methods: Researchers utilized user-generated content on Inspire, looking at over 11 million posts across Inspire. Posts were written by patients and caregivers belonging to a variety of communities on Inspire. After identifying these posts, researchers used NLP and hands-on linguistic analysis to draw and expand upon correlations among statin use, memory, and cognition. Results: NLP analysis of posts identified statistical correlations between statin users and the discussion of memory impairment, which were not observed in control groups. NLP found that, out of all members on Inspire, 3.1% had posted about memory or cognition. In a control group of those who had posted about TNF inhibitors, 6.2% had also posted about memory and cognition. In comparison, of all those who had posted about a statin medication, 22.6% (P<.001) also posted about memory and cognition. Furthermore, linguistic analysis of a sample of posts provided themes and context to these statistical findings. By looking at posts from statin users about memory, four key themes were found and described in detail in the data: memory loss, aphasia, cognitive impairment, and emotional change. Conclusions: Correlations from this study point to a need for further research on the impact of statins on memory and cognition. Furthermore, when using nontraditional datasets, such as online communities, NLP and linguistic methodologies broaden the population for identifying side-effect signals. For side effects such as those on memory and cognition, where self-reporting may be unreliable, these methods can provide another avenue to inform patients, providers, and the Food and Drug Administration.

Dr. Howard Koh, Former Assistant Secretary of Health and Human Services (HHS explained, "While [health literacy] may not necessarily attract headlines, it is absolutely at the core of everything we do as health care ... professionals." Yet making health information that is searched for on the Internet accessible means not only reducingjargon but also reducing volume. Personalization is one answer that Medivizor, a start-up featured in Forbes, has developed to answer the need. Hospitals and providers partner with Medivizor to improve the health literacy of patients, enhancing engagement and collaborative decision-making.

Earlier research found that increasing the accessibility of a source's likability from memory results in greater agreement with a message attributed to that source. Three explanations were proposed for that earlier finding. Accessible liking toward the source of a message may result in increased likelihood of (a) biased central processing, (b) using a likability heuristic, or (c) motivated central processing. This experiment demonstrated that when the message is counterattitudinal and included weak arguments, participants were more likely to critically scrutinize the message as the accessibility of the source's likability increased from memory. As a consequence, attributing the message to a likable source reduced the persuasiveness of the message.

Television advertising for the Massachusetts Tobacco Control Program (MTCP) was launched in 1993. The campaign's first three years were examined against an analytical framework based in behavioral change and communications theory. The most common focus in the 49 advertisements was tobacco industry practices, followed by health consequences for smokers and smoking prevention. Only one smoking prevention advertisement was targeted to children younger that age 13. Only four advertisements mentioned policy actions to reduce youth access or curtail exposure to environmental tobacco smoke. Only two advertisements listed the telephone number for the MTCP's smoking cessation program. The television campaign was uncoordinated with the MTCP's community-level programs.

The purpose of the researcher was to investigate Attitudes Toward Alcohol and Knowledge of Alcohol in students in grades 7 and 8. The following independent variables were investigated: Perceived Peer Attitude Toward Alcohol, Perceived Parental Attitude Toward Alcohol, Knowledge of Alcohol, grade placement, and gender. The dependent variable was scores from the Attitude Toward Alcohol questionnaire. The sample consisted of 112 students. Six composite null hypotheses were tested employing a three-way analysis of variance (general linear model) at the .0500 level. A total of 22 comparisons were made plus 20 recurring. Of the 22 comparisons 6 were for main effects and 16 were for interactions. Of the 6 main effects 3 were statistically significant at the .0500 level. The following main effects were statistically significant. 1) the independent variable Perceived Peer Attitude Toward Alcohol and the dependent variable Attitude Toward Alcohol. 2) the independent variable Perceived Parental Attitude Toward Alcohol and the dependent variable Attitude Toward Alcohol, and 3) the independent variable gender and the dependent variable Attitude Toward Alcohol. Or the 16 interactions 3 were statistically significant at the .0500 level. The following interactions were statistically significant: 1) the independent variables Perceived Peer Attitude Toward Alcohol and Perceived Parental Attitude Toward Alcohol for the dependent variable Attitude Toward Alcohol. 2) the independent variable Perceived Parental Attitude Toward Alcohol and Knowledge of Alcohol for the dependent variable Attitude Toward Alcohol, and 3) the independent variables gender, and Knowledge of Alcohol for the dependent variable Attitude Toward Alcohol. The results of the present study appeared to support the following generalizations: 1) Perceived Peer Attitude Toward Alcohol and Perceived Parental Attitude Toward Alcohol should be interpreted concurrently for Attitude Toward Alcohol. 2) Perceived Parental Attitude Toward Alcohol and Knowledge of Alcohol should be interpreted concurrently for Attitude toward Alcohol, and 3) gender and Knowledge of Alcohol should be interpreted concurrently for Attitude Toward Alcohol.

The present study was designed to assess the effects of forewarning of explicit violence on the experience of suspense. Male and female undergraduate students were read one of two consent forms, which either alerted them to the violent and potentially offensive content of the film they were about to see or that assured them that the graphically violent material had been cut from the film. Participants then watched one of two suspenseful him clips. Results show that respondents who were told that the film clip contained graphic violence experienced significantly more distress than respondents who were told that graphic violent content had been cut. Gender differences also emerged, with females responding more strongly to the film clips than did the males. The mediating role of empathic sensitivity in the experience of suspense was considered in interpreting the observed gender differences.

Over the past few decades, economic, legal, technological, demographic, and political changes in the social context of health care in the United States have produced significant modifications in perceptions and expectations of the health care system. The quality of care provided within health services institutions, encompassed within the catch phrase &dquo;continuous quality improvement&dquo; or &dquo;total quality management,&dquo; is a focus of much discussion and even a mandate by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Specific methods of quality improvement remain questionable; yet multidisciplinary collaboration and teamwork have been identified by