ABSTRACT
Purpose of Study: Individuals with neurodevelopmental disabilities (NDD) encounter the healthcare system more frequently than their neurotypical peers, but most systems have not adapted a patient-centered approach to train staff and design spaces that are optimized for individuals with NDD. Certified Child Life Specialists (CCLS), Developmental-Behavioral Pediatricians, and a board-certified behavioral analyst at the Center for Excellence in Developmental Disabilities (CEDD) at the UC Davis MIND Institute partnered with nursing teams from the UC Davis COVID Vaccine Program to develop a dedicated Vaccine Clinic that addresses common barriers to vaccination for individuals with NDD. The program included training for vaccine program staff, and COVID vaccination and vaccine education for individuals with NDD in a safe, inclusive setting. Methods Used: MIND Institute staff obtained input from CEDD Community Advisory Committee and community partners to develop clinic protocols and dissemination strategies. Vaccine program staff received training about NDD and a website and video describing the clinic were created. After patients scheduled an appointment, they were contacted by CCLS who completed a structured intake interview that addressed each patient's likes and dislikes, sensory sensitivities, preferred method of communication, and history of previous experiences with medical procedures. Prior to the vaccine appointment, Child Life staff shared a social story with the families that provided a visual description of each step of their visit to the MIND Vaccine Clinic. Team huddles were completed the morning of vaccine clinic. Summary of Results: 321 doses of the COVID-19 vaccine were scheduled to be administered to individuals with NDD ages 5 to 67 years (225 M, 91 F, gender nonconforming 5). 8 appointments were either canceled or the individual did not attend. We were able to safely administer 310 (99.3%) doses. Conclusion(s): Strategies were developed to address common barriers to vaccination, some of which are more common in individuals with NDD, including sensory dysregulation, history of medical trauma, and concerns about how a novel vaccine might impact a patient's specific medical condition. A structured intake, staff training, daily huddles and a quiet dedicated space, longer appointments and dedicated parking were key elements of clinic success.
ABSTRACT
People with metastatic breast cancer face barriers to finding information and support Background FORCE, a national nonprofit organization developed a health communication tool to help patients assess research relevance, key findings, and the quality of media reporting on cancer to support informed and shared health decision-making. People with metastatic breast cancer (mBC) are a priority population. Methods The organization conducted a survey about awareness of and access to breast cancer information and supportive services for people living with metastatic breast cancer. The organization promoted the survey through e-mail and social media, and a network of partner organizations that serve the metastatic breast cancer community. The survey invited respondents to volunteer to participate in focus groups and a follow-up survey in order to support efforts to serve this priority population. Results and Conclusions While interest in clinical trials was high, many users reported that thy do not know how to find an appropriate clinical trial. A majority of the 335 respondents were interested in information about clinical trials, treatment side effects, research findings, long-term health issues, diet/exercise, fatigue, and emotional health. Three quarters of the respondents indicated that they had never participated in a clinical trial, 67% indicated they would be interested in participating in the future, and about 40% indicated they did not know how to find a clinical trial recruiting people with metastatic breast cancer. Approximately one-third of participants were unable to obtain referrals to services they sought. Other barriers to services included lack of insurance coverage, lack of availability, and the COVID-19 public health emergency. Focus group responses indicate that women with mBC find the health communication tool to be useful, and appropriate in language, images, and tone. Results indicate that women with mBC are interested in finding information about clinical trials and other topics related to treatment side effects and quality of life. FORCE and partners are incorporating these results into tailored online resources to meet the needs of the mBC community.