COVID-19 vaccination in individuals with spina bifida: A national survey.

PURPOSE: This study aimed to conduct a national survey of individuals with spina bifida (SB) and their care partners to assess COVID-19 vaccination behaviors and vaccine uptake. METHODS: A survey instrument was designed to assess current vaccination status, general perceptions towards vaccinations, and barriers to vaccination within the SB community. Surveys were administered to individuals with SB or their representing care partner. Chi-squared and independent-samples t-tests were used to analyze the relationship between vaccine uptake and demographics. Multivariable logistic regression modeling was used to test which predictors impacted the odds that a participant received a COVID vaccine. RESULTS: A total of 1,412 participants completed the questionnaire, and 1,145 participants reported their COVID-19 vaccine status. The most common reason for not getting vaccinated was a concern about vaccine safety and efficacy. Overall, healthcare professional recommendations played a significant (OR 2.77 p < 0.001) role in whether to get vaccinated. CONCLUSION: About one in five individuals with SB have not received any COVID-19 vaccine. Actionable and modifiable factors were identified which may help increase vaccine uptake. Importantly, health providers play a critical role in COVID-19 vaccination messaging and should emphasize vaccine safety and efficacy.

Nurse-led eHealth transition care program for adolescents with spina bifida: A feasibility and acceptability study.

PURPOSE: This study aimed to evaluate the feasibility and acceptability of a nurse-led eHealth transition care program for adolescents with spina bifida. DESIGN AND METHODS: This study used a single-arm, pretest-posttest intervention study. Adolescents with spina bifida, aged 12-15 years, and their parents participated in the program. A 6-week program was delivered through an online platform in real-time by nurses. We evaluated feasibility and acceptability using criteria such as the completion rate, program satisfaction, changes in transition readiness, social support, career preparation behavior, sexual knowledge, and sexual worries at three time points from July to September 2021. RESULTS: Thirteen adolescents completed all sessions and surveys (13/14, 92.9%). All adolescents expressed high satisfaction with both the content and delivery methods of the program. Significant benefits in transition readiness, career preparation behavior, and sexual knowledge were identified over the study period. However, the evaluation of social support and sexual worries did not demonstrate any significant improvements. Additionally, through family counseling, adolescents benefited from experiences such as reflecting on their current transition readiness, setting and achieving individualized goals and plans using a self-checklist with their parents and nursing professionals. CONCLUSION: This nurse-led eHealth intervention was feasible and acceptable for adolescents with spina bifida. Furthermore, our results highlight the practicability and the potential for strategic dissemination of using this eHealth program in transitional care during the COVID-19 pandemic. PRACTICE IMPLICATIONS: The eHealth transition care program contributes to broadening existing nursing interventions not only in medical areas but also in daily life areas.

An Online-Based Transition Care Program for Adolescents with Spina Bifida Using Intervention Mapping: A Protocol for Program Development.

Adolescents with spina bifida (SB) face challenges in their transition to adulthood due to intensive medical regimens and delayed development of independence. Despite an increasing interest in the transition of adolescents with SB to adulthood, the clinical evidence of transition care remains limited, and existing studies have focused on the effects of intervention programs. This study aims to describe the process of systematically developing an online-based transition care program for adolescents with SB using the intervention mapping (IM) protocol. IM consists of six steps: (1) logic model of the problem; (2) program objectives; (3) program design; (4) program production; (5) plan to implement the program; (6) plan for evaluation. At first, five problems faced during the transition were identified, based on which four program objectives and six program strategies were established. The online transition care program for adolescents with SB was developed as a six-week program. The main strength of this program is that it reflects the diverse perspectives of adults with SB and health care professionals and is easy to apply because it is online. We aim to further validate the feasibility of this transitional care program to evaluate its effect based on our evaluation plan.

A Systematic Review of Cognitive Function in Adults with Spina Bifida.

Background: Though much research has been done on the cognitive profiles of children, the abilities of patients with SBM as they age into adulthood are not well understood.Objective: Determine if adults with SBM have impairments in overall cognition, attention, executive function, and memory compared to typically developing adults or a standardized population mean.Methods: A medical librarian composed a search of spina bifida, adults, and cognitive function. 549 results were screened using title and abstract. Data were extracted using Covidence review software, including risk of bias assessments. 24 studies were included.Results: Memory impairments, notably working and prospective, have been reported. Results in other domains varied. Average VIQ or PIQ did not imply lack of impairment in other specific domains.Conclusion: Memory impairments should be accounted for and neuropsychological testing should be considered when providing care to adults with SBM. Future longitudinal cognitive aging and interventional studies are needed.

"We Are Anxious Every Day": COVID-19 Impacts on Youth with Spina Bifida.

OBJECTIVE: This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB. METHODS: AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. RESULTS: Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. CONCLUSIONS: The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

Guidelines and scientifically-based spina bifida care: Guidance across the lifespan in a global health context.

The COVID-19 pandemic has reminded us that, if of nothing else, we live in a globalized community. Enthusiasm for evidenced-based medical knowledge is also contagious. Just as the incidence of SARS-CoV-2, the associated coronavirus, has had a borderless impact on global public health, so too neural tube defects have widespread significance. Previously, the concept of "blue marble health" was introduced as a policy framework to illustrate trends in the geographic distribution of health disparities affecting at-risk populations that live, not only in low-income countries, but also in pockets of the populace in wealthier nations. Subsequently, the Spina Bifida Association's Collaborative Care Network, through a cooperative agreement with the Centers for Disease Control and Prevention, recently produced the "Guidelines for the Care of People with Spina Bifida." While language differences, immigration, cultural beliefs, acculturation, local resources and social determinants of health, must be taken into account when these guidelines are implemented across the globe, they could not come at a more suitable time. The current digital age, as well as open access to this special issue, will ensure their ongoing wide distribution.

Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs.

BACKGROUND: While COVID-19 outbreak has had adverse psychological effects in children with special needs, the mental state and burden on their caregivers during this pandemic has yet to be reported. AIMS: The objectives of this study were to describe the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak. METHODS AND PROCEDURES: Two hundred sixty four caregivers completed an online survey that assessed demographics, use and perspective on tele-rehabilitation, homecare therapy, caregiver's strain and mental health. OUTCOMES AND RESULTS: The prevalence of depression, anxiety and stress symptoms were found to be 62.5 %, 20.5 % and 36.4 % respectively. A significant difference in caregiver strain (p <  0.001, effect size = 0.93) was observed during the outbreak compared to levels pre-outbreak (pre-outbreak strain was measured retrospectively). Caregivers not using tele-rehabilitation along with a perception of it being a poor medium for rehabilitation were at greater risks for poor mental health whereas a negative perception on homecare therapy were strongly associated with higher psychological symptoms and strain. CONCLUSIONS AND IMPLICATIONS: This study identified a high prevalence of depression and significant change in strain displayed by caregivers during the COVID-19 outbreak. We identified several factors associated with poor mental health and perceived strain that can be used to help safeguard caregivers.

A Mixed Methods Evaluation of The Paediatric Musculoskeletal Matters (PMM) Online Portfolio (preprint)

Background Electronic resources (e-resources) have considerable potential to reach users around the world to promote awareness and knowledge about musculoskeletal conditions. The ‘PMM portfolio’ targets non-specialists in musculoskeletal medicine and comprises the Paediatric Musculoskeletal Matters (PMM) website, the paediatric Gait, Arms, Legs and Spine (pGALS) app and e-learning modules (ELM). Our aim was to evaluate the ‘PMM portfolio’ to gain insights about it’s impact on learning and clinical practice. Methods Mixed methods (e-resource analytics, online survey, interviews) with PMM and ELM registered users in addition to purposive sampling of users using UK and international contacts within paediatrics and paediatric rheumatology. Data was analysed using descriptive statistics and free-text comments using qualitative techniques. A Paired T-Test compared self-rated confidence before and after use of the e-resources. Results There has been wide international reach for all e-resources PMM website (662,827 hits, 262,476 users, 214 countries, data 31st July 2020), pGALS app (12,670 downloads, 70 countries, data 31st July 2020); ELM (150 users, 30 countries, data 30th May 2019). There were 164 responses to the survey from 25 countries from a range of students, trainees and health care professionals. Most deemed the ‘PMM portfolio’ to be ‘useful or very useful’ for their learning (or when used to teach others) and reported significantly increased self-rated confidence in their clinical examination and reasoning skills following access to the e-resources (PMM website, p=<0.01; pGALS app, p=<0.01; ELM, p=<0.01). Easy, open access, clinical images, videos and cases were deemed the most valued features of the e-resources. The most popular PMM website pages related to clinical assessment. There was high uptake of the pGALS app and pGALS’ ELM especially from trainees and allied health professionals. Conclusions The ‘PMM portfolio’ has wide reach amongst a spectrum of our target users to raise awareness and improve knowledge and skills. Ongoing engagement with users will facilitate further iterations of the ‘PMM portfolio’ to remain relevant for the global context. PMM as a model of e-learning has increasing applicability with the ongoing Covid-19 pandemic and is an important way to expand global paediatric rheumatology.