Using social media listening to understand barriers to genomic medicine for those living with Ehlers-Danlos syndromes and hypermobility spectrum disorders.

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.

Opportunities to expand access to mental health services: A case for the role of online peer support communities.

This study investigated whether with disruptions in care due to the COVID-19 pandemic, persons who self-identified as living with a mental health condition increased their usage of an online peer support community. We also explored whether study participants who self-reported usage of online peer support communities were interested in using these communities to connect with evidence-based interventions and mental health services. This study employed a cross-sectional online survey design. The survey was disseminated by the Inspire online peer support community and Mental Health America through various social media channels. Descriptive and inferential analyses were conducted to summarize participant demographics, investigate patterns of use of online peer support communities, and interest in accessing additional programs through these platforms. There were 369 survey respondents, with a mean age of 49 (SD = 15.6), of which 77% were female. Most respondents self-reported having depression (34%), post-traumatic stress disorder (25%), and anxiety-related conditions (20%). The number of respondents who reported accessing online peer support platforms multiple times a day appeared to double after March 2020. We also found an overall positive association between frequency of community use and self-reported benefit to mental health. Approximately 81% of respondents expressed interest in accessing mental health services via an online peer support community. Persons who self-report living with mental health conditions and who engage in online peer support communities expressed interest in accessing evidence-based interventions via these online platforms. Participants were most interested in services related to enhancing coping mechanisms and skills, enabling overall wellbeing, and accessing therapy.

Parent and child self-reports of dietary behaviors, physical activity, and screen time.

OBJECTIVE: To determine differences between children and their parents' perceptions regarding dietary behaviors, physical activity (PA), and screen time. STUDY DESIGN: This study included 292 children in the 3rd and 4th grades (mean age 8.48 years) and their parents/guardians. Eighty-eight parent/guardian-child pairs completed a modified version of the Centers for Disease Control and Prevention Youth Risk Behavior Survey that specifically asked parents about their child's health behaviors. A similar version of the survey was also given to their children to answer questions regarding their personal health behaviors. A paired t test was performed to assess the difference in parent-child responses. An independent t test was performed to assess the sex and age difference in nutritional habits, amount of screen time, and PA among children. RESULTS: Of 88 parent-child dyads, there was no single dyad that provided the same answers to all the questions. There are differences between children's and parent's perception of average food consumption, amount of screen time, and PA. Fourth graders reported higher number of PA days than did 3rd graders (4.65 vs 5.57, P < .05). CONCLUSIONS: The discrepancies found between parents and their children concerning food choices, juice and soft drinks, screen time, and PA are all troubling, particularly in a community where obesity risk is high. The findings indicate a continued need for information about parent and child perceptions of diet behaviors and PA.

The effects of physical activity on the epiphyseal growth plates: a review of the literature on normal physiology and clinical implications.

BACKGROUND: Children need physical activity and generally do this through the aspect of play. Active play in the form of organized sports can appear to be a concern for parents. Clinicians should have a general physiological background on the effects of exercise on developing epiphyseal growth plates of bone. The purpose of this review is to present an overview of the effects of physical activity on the developing epiphyseal growth plates of children. METHODS: A National Library of Medicine (Pubmed) search was initiated using the keywords and combinations of keywords "growth plate", "epiphyseal plate", "child", "exercise", and "physical activity." DISCUSSION: Bone is a dynamic tissue with a balance of osteoblast and osteoclast formation. The normal functioning of the epiphyseal growth plate is an important clinical aspect. Much of the physiology of the epiphyseal growth plate in response to exercise includes the important mechanical component. Growth hormone, insulin-like growth factor I, glucocorticoid, thyroid hormone, estrogen, androgen, vitamin D, and leptin are seen as key physiological factors. While there is a need for children to participate in physical activity, clinical consideration needs to be given to how the epiphyseal growth plate functions. CONCLUSIONS: Mechanical loading of the bone is important for epiphyseal plate physiology. Exercise has a healthy function on the normal growth of this important biomechanical feature. Clinically, over-exertion in the form of increased load bearing on the epiphyseal growth plate creates an ideal injury. There is a paucity of research on inactivity on the epiphyseal growth plate resulting in stress deprivation. Further research should take into consideration what lack of exercise and lessened mechanical load bearing has on the function of the epiphyseal growth plate. KEYWORDS: Child; Physical activity; Epiphyseal growth plates; Bone; Exercise; Mechanical loading.