Meaningful Improvements in Rett Syndrome: A Qualitative Study of Caregivers.

BACKGROUND: Rett syndrome is a rare neurodevelopmental disorder primarily affecting females. This syndrome is associated with many comorbidities and impairments related to motor function, breathing, sleep, expressive language, and repetitive hand movements. The Rett Syndrome Behaviour Questionnaire (RSBQ) is one measure used to assess changes in Rett syndrome-related manifestations or core symptoms. Little is known about how caregivers think about meaningful changes in the items that make up the RSBQ scale. METHODS: This qualitative study explored how caregivers of individuals with Rett syndrome viewed changes in the symptoms covered in the RSBQ. We conducted semistructured interviews with 40 caregivers and employed thematic analysis, identifying themes using an iterative process. RESULTS: Two factors characterized caregivers' thoughts about meaningful changes in Rett syndrome manifestations. First, general features of these symptoms rendered them bothersome: the extent of bother compared to other symptoms, if or how they prevented desirable behaviors and their temporal qualities. Second, caregivers evaluated the meaning of improvements by considering the decrease in bother and the potential benefits of change. Improvements had social and psychological consequences for individuals with Rett syndrome and caregivers. In addition, implications for health, fine and gross motor skills, and communication were also substantial.

Community-Based COVID-19 Vaccine Clinics in Medically Underserved Neighborhoods to Improve Access and Equity, Philadelphia, 2021-2022.

Vaccination remains key to reducing the risk of COVID-19-related severe illness and death. Because of historic medical exclusion and barriers to access, Black communities have had lower rates of COVID-19 vaccination than White communities. We describe the efforts of an academic medical institution to implement community-based COVID-19 vaccine clinics in medically underserved neighborhoods in Philadelphia, Pennsylvania. Over a 13-month period (April 2021-April 2022), the initiative delivered 9038 vaccine doses to community members, a majority of whom (57%) identified as Black. (Am J Public Health. 2022;112(12):1721-1725. https://doi.org/10.2105/AJPH.2022.307030).

LGBTQ+ Affirming Care May Increase Awareness and Understanding of Undetectable = Untransmittable among Midlife and Older Gay and Bisexual Men in the US South.

One of the most significant innovations in HIV prevention is the use of HIV treatment to prevent HIV transmission. This information has been disseminated as the "Undetectable = Untransmittable" (U = U) message. Despite evidence of effectiveness, U = U awareness, belief, and understanding remains limited in some communities. In this study, we examine whether having an LGBTQ affirming healthcare provider increases U = U awareness, belief, and understanding among midlife and older gay and bisexual men in the US south, an understudied and underserved population and region where new HIV infections are increasing. We used data from the Vanderbilt University Social Networks Aging and Policy Study (VUSNAPS) on sexual minority men aged 50 to 76 from four southern US states collected in 2020-2021. We found that only one in four men reported prior awareness of U = U, but awareness was higher among men who have an LGBTQ affirming provider. Among HIV negative men, those with an affirming provider were more likely to believe and understand U = U, have more accurate risk perception, and have ever tested for HIV. Improving access to LGBTQ affirming healthcare may improve U = U awareness, belief, and understanding, which could help to curb HIV transmission in the US south.

Shifting Coronavirus Disease 2019 Testing Policy and Research to Include the Full Translation Pipeline.

The current severe acute respiratory syndrome coronavirus 2 testing policy and practice limits testing as a prevention tool. Radical shifts are required to increase the scale of rapid testing strategies and improve dissemination and implementation of venue-based and self-testing approaches. Attention to the full translation pipeline is required to reach high-risk segments of the population.