Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.

INTRODUCTION: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). METHODS: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. RESULTS: Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. CONCLUSION: The PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.

Mobile Health Apps, Family Caregivers, and Care Planning: Scoping Review.

BACKGROUND: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians. OBJECTIVE: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities. METHODS: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus. RESULTS: We identified 34 papers representing 25 individual studies, including 18 (53%) pilot and feasibility studies, 13 (38%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record. CONCLUSIONS: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination.

An investigation of computer-game addiction, physical activity level, quality of life and sleep of children with a sibling with a chronic condition.

BACKGROUND: It is known that chronic condition also affects siblings without chronic illness. Healthy siblings of children with a chronic condition and aged 9-14 years and healthy children with a sibling without chronic illness and their parents were included in the study. AIM: The aim of our study was to examine the internet-game addiction, physical activity, quality of life and sleep in children with a sibling with chronic condition and compare them with their peers with a healthy sibling. METHODS: Computer game addiction, physical activity, sleep quality and quality of life were evaluated respectively by Computer Game Addiction Scale for Children, Child Physical Activity Questionnaire, Children's Sleep Disorder Scale and Children's Quality of Life Scale. RESULTS: While the mean age of 75 children with chronically ill siblings was 10.65 ± 1.59 years, the mean age of 75 healthy children with healthy siblings was 10.46 ± 2.09 years. It was observed that children with a sibling with a chronic condition were more tend to computer-game addiction, had lower sleep quality, lower quality of life in terms of school functionality and psychosocial health compared to children with a healthy sibling (p < 0.05). CONCLUSIONS: It was revealed that in families with children with a chronic condition, siblings with no health problems should also be evaluated in psychosocial terms and supported by appropriate approaches, such as to increase the level of physical activity.

Peer support in adolescents and young adults with chronic or rare conditions in northern America and Europe: Targeted literature review.

PROBLEM: Adolescents and young adults with chronic or rare conditions face unique risks to their physical, social and emotional development. Research suggests that peer support improves their quality of life and reduces social isolation. However, there is a paucity of current information considering multiple intervention formats. ELIGIBILITY CRITERIA: A targeted literature review was conducted to identify peer support interventions and assess their feasibility, acceptability and efficacy for this population. Searches were conducted in MEDLINE, Embase and American Psychological Association PsycINFO for records reporting peer support interventions in young adults with chronic or rare conditions. Data were extracted from relevant publications and qualitatively evaluated. SAMPLE: Thirty studies were included, which assessed the use of peer support for young adults (aged 13-30 years) with chronic or rare conditions in Europe or North America. RESULTS: Peer support interventions had positive effects on social positivity, psychosocial development and medical outcomes, though significance was not always demonstrated. CONCLUSIONS: Peer support can enhance care for young adults with chronic or rare conditions. Current literature suggests that once-weekly virtual interventions are the most feasible and acceptable for patients, leading to multifaceted improvements in their well-being. IMPLICATIONS: This study is one of the first to discuss in-person, virtual and hybrid peer-based interventions for young adults with chronic and rare conditions. While all formats improved social, psychological and medical outcomes, virtual formats may be most accessible to participants. Interventions should be made available to this population, and guidelines for optimal implementation of peer support are needed.

Quality of life and family management of paediatric chronic condition amidst the COVID-19 pandemic.

PURPOSE: This study aimed to describe the perception of parents of children/adolescents with chronic conditions of their quality of life and family functioning during the COVID-19 pandemic and explore how the COVID-19 pandemic affected family management of children/adolescents' chronic conditions. DESIGN AND METHODS: A total of 237 parents of children/adolescents with chronic conditions participated in this cross-sectional study. Data were collected through an online questionnaire using the Paediatric Quality of Life Inventory™ Family Impact Module and an open-ended question about the impact of the pandemic on the family management of the paediatric chronic condition. RESULTS: The Total Score of PedsQL™ FIM was slightly higher than the midpoint of the scale (M = 60.27; SD = 19.04), and the impact of the pandemic on the family's management of the chronic condition was perceived by 30% of parents as high or moderate. Statistically significant differences were found between parents who reported a high or moderate impact of the pandemic and those reporting little or no impact of the pandemic regarding parental quality of life and family functioning (t (233) = 8.13, p = .00, Cohen's d = 1.14). Two themes emerged from the analysis of the open-ended question: Impact on the child/adolescent and Impact on the family. CONCLUSIONS: Parents of children/adolescents with chronic conditions reported an average quality of life, and the COVID-19 pandemic significantly impacted the family management of chronic conditions. PRACTICE IMPLICATIONS: These results highlight the importance of developing interventions to support families in complex situations and contexts, targeting family functioning, family quality of life, and emotional management.

Barriers and facilitators to accessing pediatric specialty care for rural-dwelling children with complex chronic conditions: An integrative review.

PROBLEM: Pediatric specialty services are often geographically concentrated in urban areas, leaving up to 1 in 5 rural-dwelling children in the United States without access to advanced care. The purpose of this review was to identify and review extant literature related to barriers and facilitators to accessing specialty care for rural-dwelling children with complex chronic conditions. ELIGIBILITY CRITERIA: The Whittemore and Knafl (2005) integrative review method guided the review which included a critical appraisal and analysis of relevant articles published between 2012 and 2023. SAMPLE: Twenty-three studies were identified for inclusion in the integrative review. RESULTS: Using the domains of the Levesque et al. (2013) conceptual framework, findings were categorized according to the access to care continuum. Barriers included broadband access, transportation, and inadequate care coordination. Facilitators included telehealth, social support, and outreach clinics. CONCLUSIONS: To improve access to pediatric specialty care for rural-dwelling children, nurses, physicians, and policymakers will need to consider how the social determinants of health impact the healthcare access continuum from diagnosis to continuing healthcare. IMPLICATIONS: The findings of this integrative review will aid researchers in developing interventions to improve access to pediatric specialty care for rural-dwelling children.

Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis.

PURPOSE: Chronic health conditions impact nearly 40% of children in the United States, necessitating parents/caregivers to entrust healthcare responsibilities to youth aging into adulthood. Understanding the parental entrustment process may lead to tailored transition support; however, the concept lacks conceptual clarity, limiting its research and practical applications. DESIGN AND METHODS: Rodgers' evolutionary concept analysis method was used to clarify the parental entrustment of healthcare responsibilities to youth with chronic health conditions. PubMed, CINAHL, and PsycINFO databases were searched without date restrictions, including full-text, English-language, primary source articles related to parent-child healthcare transition preparation. Following title, abstract, and full-text screenings, data were analyzed using a hybrid thematic approach to identify antecedents, attributes, and consequences. RESULTS: Forty-three studies from August 1996 to September 2023 were identified. Antecedents encompass social cues and readiness factors, while attributes involve a) responsibility transfer, support, and facilitation, b) a dynamic process, c) balancing trust and fear, d) navigating conflict, and e) parental letting go. Consequences entail shifts in parental and adolescent roles. Parental entrustment is an iterative process wherein parents guide their maturing child through responsibility transfer via facilitation, support, conflict navigation, and trust building. CONCLUSION: The clarified concept underscores the role of parents/caregivers in empowering youth to manage their health. Introducing a working definition and conceptual model contributes to understanding the processes families navigate in the larger landscape of healthcare transition. PRACTICE IMPLICATIONS: This clarification holds implications for clinicians and policymakers, offering insights to enhance support and guidance for families navigating healthcare transition.

A national survey of current practice on patients with long term and additional needs in paediatric intensive care units.

BACKGROUND: Patients with long term and additional needs (LEAP) in paediatric intensive care units (PICUs) are a growing and heterogenous cohort that provide unique challenges to clinicians. Currently no standard approach to define and manage this cohort exists. AIM: To analyse bed occupancy, examine current practice, and explore ideas to improve PICU care of patients with long term and additional needs. STUDY DESIGN: Patients with LEAP were defined as meeting two or more of the following criteria: length of stay >14 days; life limiting condition; ≥2 failed extubations; hospital stay >1 month prior to PICU admission; likely to require long-term ventilation. An electronic survey was then sent to all UK PICUs, via the UK Paediatric Critical Care Society, to collect quantitative and qualitative data relating to bed occupancy, length of stay, multidisciplinary and family involvement, and areas of possible improvement. Data collection were occurred between 8 February 2022 and 14 March 2022. Quantitative data were analysed using Microsoft Excel 365 and SPSS Statistics version 28.0. Raw data and descriptive statistics were reported, including percentages and median with interquartile range for non-parametric data. Qualitative raw data were examined using thematic analysis. Analysis was undertaken independently by two authors and results assessed for concordance. RESULTS: 70.1% (17/24) PICUs responded. 25% (67/259) of PICU beds were occupied by patients with long term and additional needs. 29% (5/17) of responding units have tailored management plans to this cohort of patient. A further 11% (2/17) have guidelines for children with generic chronic illness. 12% (2/16) of responding units had a designated area and 81% (13/16) of responding units had designated professionals. The majority (68% and 62%) of responding units engaged families and community professionals in multidisciplinary meetings. When asked how the care of long term and additional needs patients might be improved five themes were identified: consistent, streamlined care pathways; designated transitional care units; designated funding and hospital-to-home commissioning; development of roles to facilitate collaboration between hospital and community teams; proactive discharge planning and parallel planning. CONCLUSIONS: This survey provides a snapshot of UK practice for a cohort of patients that occupies a considerable proportion (29%) of PICU beds. While only a minority of responding PICUs offer specifically tailored management plans, the majority of units have designated professionals. RELEVANCE TO CLINICAL PRACTICE: Opportunities exist to improve PICU care in LEAP patients in areas such as: streamlined care pathways, designated clinical areas, designated funding, and development of defined collaborative roles. Next steps may involve working group convention to develop a consensus definition and share good practice examples.

The Role of a Smart Health Ecosystem in Transforming the Management of Chronic Health Conditions.

The effective management of chronic conditions requires an approach that promotes a shift in care from the clinic to the home, improves the efficiency of health care systems, and benefits all users irrespective of their needs and preferences. Digital health can provide a solution to this challenge, and in this paper, we provide our vision for a smart health ecosystem. A smart health ecosystem leverages the interoperability of digital health technologies and advancements in big data and artificial intelligence for data collection and analysis and the provision of support. We envisage that this approach will allow a comprehensive picture of health, personalization, and tailoring of behavioral and clinical support; drive theoretical advancements; and empower people to manage their own health with support from health care professionals. We illustrate the concept with 2 use cases and discuss topics for further consideration and research, concluding with a message to encourage people with chronic conditions, their caregivers, health care professionals, policy and decision makers, and technology experts to join their efforts and work toward adopting a smart health ecosystem.

Barriers and facilitators to the implementation of the Flinders Chronic Condition Management Program in outpatient drug and alcohol settings in Australia.

INTRODUCTION: There has been a growing call for drug and/or alcohol dependence to be managed as a chronic condition. The Flinders Chronic Condition Management Program (Flinders Program) was implemented in a drug and alcohol service in Australia in 2019-2022 to explore the feasibility of chronic condition management in outpatient clinics. Implementation involved: adaptation of the Flinders Program; adaptation of clinical procedures; training clinicians and managers; training Flinders Program Accredited Trainers; and system integration. This study aims to explore barriers and enablers to implementation. METHODS: A qualitative formative evaluation was undertaken. Data included implementation documents (n = 7), responses to open-ended questions in post-training surveys (n = 27), and focus groups and interviews with implementation staff, clinicians, managers and a trainer (n = 16). Data were analysed using the Consolidated Framework for Implementation Research in a 'coding reliability' approach to thematic analysis. RESULTS: Participants responded positively to the Flinders Program's philosophy, processes, tools and training. However, barriers were identified across three Consolidated Framework for Implementation Research domains: (i) outer setting (client suitability and incompatibility with external policies and incentives); (ii) characteristics of individuals (low self-efficacy); and (iii) inner setting (lack of system and workflow integration). DISCUSSION AND CONCLUSIONS: Executive support and systems integration are important for the implementation of the Flinders Program in drug and alcohol services. This needs to be achieved within externally mandated key performance indicators for outpatient services. Further research is needed to fully evaluate the potential of a chronic condition management framework in Australian outpatient drug and alcohol services.

Lessons Learned From a Retrospective Analysis of Medicolegal Risks for Physicians Treated Adolescents and Young Adults With Medical Complexity.

PURPOSE: Adolescent and young adult patients occupy a clinically transitional space between pediatric and adult care. Youth with chronic conditions and special healthcare needs may have trouble accessing and receiving appropriate care in this transition, which may lead to patient safety issues and medicolegal risks for physicians. The objectives of this article were to explore patient safety issues and identify medicolegal risks for physicians. METHODS: A national repository was retrospectively searched for medicolegal cases (MLCs) involving complaints from youth. The study included MLCs closed at the Canadian Medical Protective Association between 2013 and 2022 involving youth. The study participants were adolescents and young adults aged ≥ 15 and ≤ 21 years with medical complexity. The frequencies and proportions of patient safety events and medicolegal risks for physicians were calculated by exploring factors that contributed to each incident using established frameworks. RESULTS: A total of 182 eligible MLCs were identified. Of 206 involved physicians, 55 were psychiatrists. The most common reasons for patient complaints were deficient assessment, diagnostic error, and communication breakdown with the patient and/or family. More than half of the cases were related to a harmful incident. Peer experts reviewed the cases and identified factors such as a deficient assessment, a failure to perform a test or intervention, failure to refer the patient, and insufficient provider knowledge/skill as contributing to the patient safety event. DISCUSSION: The impact of our findings is to identify gaps in care delivery to youth that can inform practitioners of ways to mitigate the gaps and improve patient care and health outcomes.

Association Between Multimorbidity and Presence of Diagnosed Vision Problems Among the Middle-Aged and Older Population in India.

PURPOSE: The aim of the study was to estimate the prevalence of diagnosed vision problems and to examine the association of single and multiple chronic conditions with vision problems among middle-aged and older adults in India. METHODS: The study utilized data from the Longitudinal Ageing Study in India (LASI) Wave 1, (2017-18). Descriptive statistics along with bivariate and multivariable analyses were conducted to achieve the study objectives. RESULTS: The prevalence of diagnosed vision problems in the sampled population was 48.2%. The older adults (60+ years) (55.3%) had shown a greater prevalence of vision problems than the middle-aged individuals (41%). Among chronic conditions, hypertension, diabetes, chronic lung diseases, chronic heart diseases, bone related diseases, psychiatric disorders, and high cholesterol were significantly associated with vision problems in the case of both middle-aged and older adults. Furthermore, odds of experiencing vision problems according to the presence of multimorbidity were higher in the middle-aged population [adjusted odds ratio (AOR) = 1.986; confidence interval (CI):1.855-2.126] than in the older population [AOR = 1.746; CI:1.644-1.854]. CONCLUSIONS: Middle-aged and older adults with chronic illnesses and multimorbidity were at greater risk of vision problems. Due to the high prevalence of vision problem, interventions aimed at prevention or early detection are warranted.

A Comprehensive Review on Trends and Patterns of Non-communicable Disease Risk Factors in India.

This review explores the trends and patterns of non-communicable disease (NCD) risk factors in India, with a focus on tobacco use, unhealthy diet, physical inactivity, and air pollution. Drawing upon existing literature and data, the review highlights the substantial burden imposed by NCDs and their associated risk factors on public health and healthcare systems in India. Key findings reveal the widespread prevalence of these risk factors, particularly among certain demographic groups and in urban areas. Socioeconomic disparities also play a significant role in shaping the distribution of NCD risk factors across the population. The review underscores the importance of addressing NCD risk factors through evidence-based interventions and policies tailored to the Indian context. Furthermore, it emphasizes the need for multi-sectoral collaboration among government agencies, healthcare providers, civil society organizations, academia, industry partners, and communities to mitigate the NCD epidemic effectively. By mobilizing collective efforts and resources, India can make significant strides in preventing and controlling NCDs, thereby enhancing population health and well-being.

Consistency between self-reported disease diagnosis and clinical assessment and under-reporting for chronic conditions: data from a community-based study in Xi'an, China.

Aims: The current study aims to investigate the consistency between the surveyees' self-reported disease diagnosis and clinical assessment of eight major chronic conditions using community-based survey data collected in Xi'an, China in 2017. With a focus on under-reporting patients, we aim to explore its magnitude and associated factors, to provide an important basis for disease surveillance, health assessment and resource allocation, and public health decision-making and services. Methods: Questionnaires were administered to collect self-reported chronic condition prevalence among the study participants, while physical examinations and laboratory tests were conducted for clinical assessment. For each of the eight chronic conditions, the sensitivity, specificity, under-reporting, over-reporting, and agreement were calculated. Log-binomial regression analysis was employed to identify potential factors that may influence the consistency of chronic condition reporting. Results: A total of 2,272 participants were included in the analysis. Four out of the eight chronic conditions displayed under-reporting exceeding 50%. The highest under-reporting was observed for goiter [85.93, 95% confidence interval (CI): 85.25-86.62%], hyperuricemia (83.94, 95% CI: 83.22-84.66%), and thyroid nodules (72.89, 95% CI: 72.02-73.76%). Log-binomial regression analysis indicated that senior age and high BMI were potential factors associated with the under-reporting of chronic condition status in the study population. Conclusion: The self-reported disease diagnosis by respondents and clinical assessment data exhibit significant inconsistency for all eight chronic conditions. Large proportions of patients with multiple chronic conditions were under-reported in Xi'an, China. Combining relevant potential factors, targeted health screenings for high-risk populations might be an effective method for identifying under-reporting patients.

Financial Stressors for Parents of Children and Emerging Adults With Congenital Heart Disease: A Qualitative Study.

INTRODUCTION: Congenital heart disease (CHD) is the most prevalent congenital disability globally. This study aimed to describe parents' perspectives on financial stressors related to having a child with CHD using a descriptive qualitative approach. METHOD: Qualitative data were obtained from parents of children with CHD in a cross-sectional web-based survey study. Iterative data analysis was used to develop essential themes that enabled a rich description of 147 parents' perspectives. RESULTS: Parents identified five financial stressors: perpetual worries about health insurance, facing the dilemma of "making too much money," struggling to balance work, worrying over having an emerging adult with CHD, and constant constraints because of financial needs. DISCUSSION: As experts in pediatric care, pediatric advanced practice providers need to work with policymakers to provide further financial assistance and sufficient insurance coverage for families that struggle to balance finances for the whole family and children with CHD.

Epidemiology, Outcomes, and Trend Analysis of Hospitalized Infants With Respiratory Syncytial Virus (RSV) Bronchiolitis From 1997 to 2019.

Background  Most children with respiratory syncytial virus (RSV) infection have a self-limiting course that can be managed with supportive care, and hospitalization is uncommon. The objectives of this study were to evaluate the epidemiology, outcomes, associated comorbidities, and temporal trends in the prevalence of infants one to 24 months of age who required hospitalization for RSV infection in the United States of America from 1997 to 2019. Methods In this retrospective cross-sectional study, we utilized the Kids' Inpatient Database (KID) to investigate the prevalence and outcomes of RSV bronchiolitis within a large cohort of discharged patients from 1997 to 2019. We included children one to 24 months of age admitted with a diagnosis of RSV bronchiolitis. Neonates were excluded from the analysis. A chi-square for linear trend was used to analyze trends in the prevalence of RSV bronchiolitis hospitalization, the presence of complex chronic conditions (CCC), congenital heart disease (CHD), the use of non-invasive and invasive mechanical ventilation (NIV and IMV), and hospital mortality. Results There were a total of 566,786 infants aged one to 24 months hospitalized with RSV infection out of a total of 9,309,597 discharges during the eight-year cohort, with a hospital prevalence of 60.9 per 1000 discharges and a hospital mortality rate of 0.09% (95% confidence interval (CI): 0.08%-0.1%). There was no trend in hospitalization rates of RSV infections per 100,000 U.S. population during the study period, with a decrease in hospital mortality trend. Children with RSV bronchiolitis were more likely to have government insurance and reside in zip codes with the lowest income quartile. There was a significant seasonal and regional variation in RSV-related hospitalizations. The presence of CCC was identified in 2.4% of the RSV group compared to 5.1% of non-RSV discharges (odds ratio (OR): 0.46, 95% CI: 0.45-0.47; p<0.001). The prevalence of RSV among all discharges has significantly increased over the study period, rising from 51.6 cases per 1000 discharges in 1997 to 180.1 cases per 1000 discharges in 2019 (p<0.001). The prevalence of CCC and CHD among RSV patients has also shown an upward trend, with CCC cases increasing from 1,411 in 1997 to 2,795 in 2019 and CHD cases rising from 1,795 to 3,622 during the same period. The use of invasive mechanical ventilation, non-invasive ventilation, and extracorporeal membrane oxygenation has consistently increased over time. Additionally, complications such as the need for cardiopulmonary resuscitation have demonstrated a similar increasing trend, although they have remained overall low. However, population-based hospitalization rates showed no significant trend. Conclusions The hospitalization rates at a population level in the United States for RSV infection in children aged one to 24 months remained steady from 1997 to 2019, while hospital mortality rates showed a declining trend. There is an increased proportion of comorbid conditions and increased resource utilization in children with RSV. These findings are important for monitoring the effectiveness of preventive strategies for severe RSV infections.

Educational Intervention to Increase COVID-19 Vaccine Uptake in Rural Patients with Chronic Diseases: Lessons Learned from An Innovative Academic-Community Partnership.

BACKGROUND: The pandemic has disproportionately impacted rural communities with a higher burden of chronic disease and COVID-19 infection. West Virginia is a rural state with a high rate of diabetes, hypertension, and COPD, which are known risk factors for severe COVID-19 and long COVID. Yet, there is a significant hesitancy regarding COVID-19 vaccination uptake in the state. The purpose of this study was to use an educational intervention to increase vaccine knowledge and vaccine acceptance in rural patients with chronic disease(s) in West Virginia. This project used an academic-community partnership comprised of researchers, practitioners, community organizations, community-engaged partners, and patient stakeholders to increase COVID-19 health literacy and increase vaccine acceptance among rural West Virginians with chronic conditions. MATERIALS AND METHODS: A quasi-experimental study design was used to deliver an educational intervention by trained Health Navigators using short videos to increase COVID-19 health literacy and address participants' vaccine concerns. Eligibility included adults (18 years and older) who have at least one chronic condition. A statewide community advisory board (CAB) guided the development of the educational training curriculum and implementation strategies. An adapted version of the Exploration, Preparation, Implementation, Sustainment (EPIS) framework guided the development of the intervention. Health Navigators (n = 45) delivered the educational intervention in their local communities between November 2022 and October 2023 (project implementation is still ongoing). Intervention fidelity checks, an adaptable script, and a flow chart allowed tailoring of brief videos to address participants' specific COVID-19 questions and vaccine concerns. A validated online survey, monitored by an online Research Electronic Data Capture (REDCap) database, assessed participants' knowledge, perceived susceptibility, and vaccine intention. RESULTS: Health Navigators delivered the intervention to 1368 West Virginians in 52 counties (59.2% women; 61.8% without a college degree). Participants reported living with an average of 2.1 ± 1.4 chronic conditions. The mean age was 43.5 ± 18.8 years. The majority of participants (81.2%) had received the primary vaccination series, and 63.1% had at least one booster. However, 18% were unvaccinated or did not complete the primary COVID-19 vaccine series. Discussions to improve vaccine literacy focused on how the vaccine was so quickly developed and protects against variants, addressing concerns related to the safety, short- and long-term side effects, and importance of vaccine uptake for immunocompromised individuals. Participants with higher concerns were more likely to be unvaccinated and to have not completed their primary series or boosters (p < 0.001). However, the educational intervention improved the willingness of individuals who were either unvaccinated or did not complete their primary vaccine series to get vaccinated (11.4%). DISCUSSION: Our findings highlight the importance of vaccine literacy in increasing vaccination rates among rural patients with chronic diseases. Using the EPIS framework allowed us to reflect upon the challenges, ensure resilience during changing local contexts, and plan and implement a promising, cost-effective intervention in rural areas. CONCLUSIONS: This study provides insights into the need for tailored educational interventions based on disease status, which has implications for public health and patient care in rural and underserved communities. Academic-community partnerships can be useful for successful knowledge transfer for vaccine acceptance to reduce rural health disparities.

Thirty-day readmissions in children with complex chronic conditions.

INTRODUCTION: The rate of hospital readmission within 30 days of discharge is a quality indicator in health care. Paediatric patients with complex chronic conditions have high readmission rates. Failure in the transition between hospital and home care could explain this phenomenon. OBJECTIVES: To estimate the incidence rate of 30-day hospital readmission in paediatric patients with complex chronic conditions, estimate how many are potentially preventable and explore factors associated with readmission. MATERIALS AND METHOD: Cohort study including hospitalised patients with complex chronic conditions aged 1 month to 18 years. Patients with cancer or with congenital heart disease requiring surgical correction were excluded. The outcomes assessed were 30-day readmission rate and potentially preventable readmissions. We analysed sociodemographic, geographic, clinical and transition to home care characteristics as factors potentially associated with readmission. RESULTS: The study included 171 hospitalizations, and 28 patients were readmitted within 30 days (16.4%; 95% CI, 11.6%-22.7%). Of the 28 readmissions, 23 were potentially preventable (82.1%; 95% CI, 64.4%-92.1%). Respiratory disease was associated with a higher probability of readmission. There was no association between 30-day readmission and the characteristics of the transition to home care. CONCLUSIONS: The 30-day readmission rate in patients with complex chronic disease was 16.4%, and 82.1% of readmissions were potentially preventable. Respiratory disease was the only identified risk factor for 30-day readmission.

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity.

Introduction: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents substantial challenges in patient care due to its intricate multisystem nature, comorbidities, and global prevalence. The heterogeneity among patient populations, coupled with the absence of FDA-approved diagnostics and therapeutics, further complicates research into disease etiology and patient managment. Integrating longitudinal multi-omics data with clinical, health,textual, pharmaceutical, and nutraceutical data offers a promising avenue to address these complexities, aiding in the identification of underlying causes and providing insights into effective therapeutics and diagnostic strategies. Methods: This study focused on an exceptionally severe ME/CFS patient with hypermobility spectrum disorder (HSD) during a period of marginal symptom improvements. Longitudinal cytokine profiling was conducted alongside the collection of extensive multi-modal health data to explore the dynamic nature of symptoms, severity, triggers, and modifying factors. Additionally, an updated severity assessment platform and two applications, ME-CFSTrackerApp and LexiTime, were introduced to facilitate real-time symptom tracking and enhance patient-physician/researcher communication, and evaluate response to medical intervention. Results: Longitudinal cytokine profiling revealed the significance of Th2-type cytokines and highlighted synergistic activities between mast cells and eosinophils, skewing Th1 toward Th2 immune responses in ME/CFS pathogenesis, particularly in cognitive impairment and sensorial intolerance. This suggests a potentially shared underlying mechanism with major ME/CFS comorbidities such as HSD, Mast cell activation syndrome, postural orthostatic tachycardia syndrome (POTS), and small fiber neuropathy. Additionally, the data identified potential roles of BCL6 and TP53 pathways in ME/CFS etiology and emphasized the importance of investigating adverse reactions to medication and supplements and drug interactions in ME/CFS severity and progression. Discussion: Our study advocates for the integration of longitudinal multi-omics with multi-modal health data and artificial intelligence (AI) techniques to better understand ME/CFS and its major comorbidities. These findings highlight the significance of dysregulated Th2-type cytokines in patient stratification and precision medicine strategies. Additionally, our results suggest exploring the use of low-dose drugs with partial agonist activity as a potential avenue for ME/CFS treatment. This comprehensive approach emphasizes the importance of adopting a patient-centered care approach to improve ME/CFS healthcare management, disease severity assessment, and personalized medicine. Overall, these findings contribute to our understanding of ME/CFS and offer avenues for future research and clinical practice.

Co-designing an intervention using the COM-B model to change an eating behaviour in people living with achalasia.

Background: Achalasia is a rare motility disorder affecting the oesophagus, leading to difficulties with eating and drinking. Participants in previous studies reported that they needed more social, clinical and behavioural support in the long-term management of achalasia. This study, therefore aimed to 1) identify the most challenging eating behaviour for people living with achalasia and 2) co-design a behaviour change intervention to help address the challenges they experience. Methods: This study used a qualitative approach involving online focus groups. The COM-B model was the theoretical framework, with behaviour change techniques (BCTs) as the active ingredients that target a mixture of capability, opportunity and/or motivation. Three focus groups were undertaken to obtain a range of input from different people living with achalasia. Participants in this study identified the target behaviour, prioritised the different BCTs which most resonated with them to design an intervention and decided on the mode of delivery. The research team analysed the techniques that helped participants with their eating behaviour using the COM-B model as a framework to create the intervention. Results: The 24 participants in this study identified "eating in a social setting" as the target behaviour for the intervention. A workbook that can be personalised by the individual was the most suitable intervention. The workbook structure aligns with the constructs of the COM-B model. It includes reflection, activities and goal-setting sections based on what was indicated to be useful for the majority of the participants. Key techniques to overcome the challenges with eating in a social setting included social support, regulation to reduce negative emotions, goals and planning. Conclusion: Using a focus group approach with the COM-B model as the theoretical framework, the participants in this study developed an intervention to support people living with achalasia. In order to achieve long-term behaviour change, engagement with a personalised workbook could facilitate eating in a social setting. Future work will need to pilot the workbook to ensure it can support people to improve their quality of life and complement the ongoing care they receive from health services.