Transition of adolescents with severe asthma from pediatric to adult care in Spain: the STAR consensus

Objective: To assess the consensus level among a multidisciplinary expert panel on the transition of adolescents with severe asthma from pediatric to adult care. Methods: A 61-item survey was developed based on guidelines for other chronic pathologies, covering transition planning, preparation, effective transfer, and follow-up. A two-round Delphi process assessed the consensus level among 98 experts (49 pediatricians, 24 allergists and 25 pulmonologists). Consensus was established with ≥70% agreement. Results: Forty-two items (70%) reached consensus. No age range to initiate the transition was agreed upon by the panelists. The main goal to achieve during the transition identified by the experts is that adolescents gain autonomy to manage their severe asthma and prescribed treatments. The panelists agreed on the importance of developing an individualized plan, promoting patient’s autonomy, and identifying home environment factors. They agreed that the adult healthcare team should have expertise in severe asthma, biologics and management of adolescent patients. Pediatric and adult healthcare teams should share clinical information, agree on the criteria to maintain the biological therapy, and have an on-site joint visit with the patient before the effective transfer. Adult healthcare professionals should closely follow the patient after the effective transfer to ensure correct inhaler technique, treatment adherence and attendance to healthcare appointments. Conclusions: This consensus document provides the first roadmap for Spanish pediatric and adult teams to ensure that key aspects of the transition process in severe asthma are covered. The implementation of these recommendations will improve the quality of care offered to the patient.

Transition Readiness in Adolescents and Young Adults With Chronic Rheumatic Disease in Oman: Today’s Needs and Future Challenges

Introduction:In Oman, the “transfer” healthcare rather than the “transition” of health care of adolescents to adult care occurs at a young age, like many other GCC countries for cultural reasons. In order to address this concern, this study was conducted to determine the transition readiness skills of adolescents and young adults with childhood onset rheumatic diseases using a cross-cultural adaptation of the UNC TRxANSITION scale.Methods: We used a professionally translated/back translated, provider-administered UNC TRxANSITION Scale. This 32-question scale measures HCT in ten domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and looking for new health providers. The maximum transitional score of 10, was categorized as low (1-4), moderate (4 - 7) and high (7 -10) transitional readiness scores.Results:We enrolled 81 Omani adolescents and young adults (AYA) with chronic childhood onset rheumatic diseases. The cohort consisted of 79% females, with mean age of 15.8 years (± 3.53) and mean disease duration of 6.95 years (± 4.83). Our cohort's overall mean score is low 5.22 (±1.68). Only 14.8% of the cohort achieved a high transition score ≥7). Significant direct relationship was observed between age and the mean transition readiness score (r = .533, P < .001). The mean transition readiness score in the younger age group (10-13 years) was 4.07 (±1.29), the middle age group (14-18 years) was 5.43 ( ±1.27), while the older age group (19-21 year), was 6.12 ( ±1.81), Mean transition score of youngest age group was found to be significantly lower than the other two age groups (p =.003).Conclusion:Overall, the transition readiness of AYA in Oman is low compared to other western countries indicating the need to initiate a health care transition preparation program for patients with chronic diseases across the country. In addition, we need to establish regional guidelines to address the transitional age policy to be in line to international recommendations.

Food Insecurity: Child Care Programs’ Perspectives

Background Households experiencing "food insecurity" have limited access to food due to a lack of money or resources. Poor nutrition, from food insecurity, can impact physical and cognitive development of children. Study objectives were to document the prevalence of Tennessee child care programs screening for food insecurity, explore differences between programs receiving child and adult care food program (CACFP) funding and those screening for food insecurity, and understand possible burdens food insecurity places on child care families as perceived by child care program directors. Methods In this cross-sectional study of licensed Tennessee child care programs, a 10-question survey and four-question follow-up survey were electronically distributed. Analysis included descriptive statistics, a chi-square of programs receiving CACFP funds and screening for food insecurity, and themes analysis of open-ended responses. Results The average child care program enrollment (N = 272) was 80.16 with programs serving mostly preschoolers (98.53%) and toddlers (91.91%). Over half (56.99%) of programs reported they received CACFP funding, yet only 9.19% screen for food insecurity. Chi-square analysis found that programs receiving CACFP funds differ significantly on whether they screen households for food insecurity $$\chi$$ χ 2 (1, n = 237) = 16.93, p ≤ 0.001. Themes analysis (n = 41) revealed that many child care program directors do not view food insecurity as a burden for families. Conclusions Child care programs receiving CACFP funds are more likely to screen families for food insecurity than programs who do not. Programs indicate a willingness to include food insecurity screening questions on child care paperwork.

Energy sustainability alternatives for the Home for the elderly Maty, in the community of Villa Juárez, Aguascalientes

Base on the objectives of the 2030 Schedule, for sustainable development for the benefit of people and the planet and, with the visionary commitment of the Universidad Tecnológica de Aguascalientes to contribute to the sustainable development of the various sectors, this article presents five alternatives of energy sustainability for the benefit of the Hogar del Abuelo Maty nursing home, located in the community of Villa Juárez, municipality of Asientos in the state of Aguascalientes. The document describes the context of this Institution, its energy consumption situation, the dynamics and operating status of equipment that requires electricity for basic healthcare services. Under a sustainability approach, the objective of this work is to provide resilient energy alternatives, aimed at generating, saving or efficient use of energy and caring for the environment. Following the applied research methodology, knowledge of photovoltaic systems allows the development of alternatives to meet a need for social impact. The main contributions derived from any of these are the positive impact generated in reducing the cost of energy consumption, caring for the environment and adult care services provided with clean energy.

Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

Multigene Panel Testing in a Large Cohort of Adults With Epilepsy

Background and ObjectivesAlthough genetic testing among children with epilepsy has demonstrated clinical utility and become a part of routine testing, studies in adults are limited. This study reports the diagnostic yield of genetic testing in adults with epilepsy.MethodsUnrelated individuals aged 18 years and older who underwent diagnostic genetic testing for epilepsy using a comprehensive, next-generation sequencing-based, targeted gene panel (range 89–189 genes) were included in this cross-sectional study. Clinical information, provided at the discretion of the ordering clinician, was reviewed and analyzed. Diagnostic yield was calculated for all individuals including by age at seizure onset and comorbidities based on clinician-reported information. The proportion of individuals with clinically actionable genetic findings, including instances when a specific treatment would be indicated or contraindicated due to a diagnostic finding, was calculated.ResultsAmong 2,008 individuals, a diagnostic finding was returned for 218 adults (10.9%), with clinically actionable findings in 55.5% of diagnoses. The highest diagnostic yield was in adults with seizure onset during infancy (29.6%, 0–1 year), followed by in early childhood (13.6%, 2–4 years), late childhood (7.0%, 5–10 years), adolescence (2.4%, 11–17 years), and adulthood (3.7%, ≥18 years). Comorbid intellectual disability (ID) or developmental delay resulted in a high diagnostic yield (16.0%), most notably for females (19.6% in females vs 12.3% in males). Among individuals with pharmacoresistant epilepsy, 13.5% had a diagnostic finding, and of these, 57.4% were clinically actionable genetic findings.DiscussionThese data reinforce the utility of genetic testing for adults with epilepsy, particularly for those with childhood-onset seizures, ID, and pharmacoresistance. This is an important consideration due to longer survival and the complexity of the transition from pediatric to adult care. In addition, more than half of diagnostic findings in this study were considered clinically actionable, suggesting that genetic testing could have a direct impact on clinical management and outcomes.