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.

Evaluation of a Remote Patient Monitoring Program During the COVID-19 Pandemic: Retrospective Case Study With a Mixed Methods Explanatory Sequential Design.

BACKGROUND: Community health center (CHC) patients experience a disproportionately high prevalence of chronic conditions and barriers to accessing technologies that might support the management of these conditions. One such technology includes tools used for remote patient monitoring (RPM), the use of which surged during the COVID-19 pandemic. OBJECTIVE: The aim of this study was to assess how a CHC implemented an RPM program during the COVID-19 pandemic. METHODS: This retrospective case study used a mixed methods explanatory sequential design to evaluate a CHC's implementation of a suite of RPM tools during the COVID-19 pandemic. Analyses used electronic health record-extracted health outcomes data and semistructured interviews with the CHC's staff and patients participating in the RPM program. RESULTS: The CHC enrolled 147 patients in a hypertension RPM program. After 6 months of RPM use, mean systolic blood pressure (BP) was 13.4 mm Hg lower and mean diastolic BP 6.4 mm Hg lower, corresponding with an increase in hypertension control (BP<140/90 mm Hg) from 33.3% of patients to 81.5%. Considerable effort was dedicated to standing up the program, reinforced by organizational prioritization of chronic disease management, and by a clinician who championed program implementation. Noted barriers to implementation of the RPM program were limited initial training, lack of sustained support, and complexities related to the RPM device technology. CONCLUSIONS: While RPM technology holds promise for addressing chronic disease management, successful RPM program requires substantial investment in implementation support and technical assistance.

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.

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.

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.

A Technological Tool Aimed at Self-Care in Patients With Multimorbidity: Cross-Sectional Usability Study.

BACKGROUND: Information and communication technologies (ICTs) have been positioned as useful tools to facilitate self-care. The interaction between a patient and technology, known as usability, is particularly important for achieving positive health outcomes. Specific characteristics of patients with chronic diseases, including multimorbidity, can affect their interaction with different technologies. Thus, studying the usability of ICTs in the field of multimorbidity has become a key element to ensure their relevant role in promoting self-care. OBJECTIVE: The aim of this study was to analyze the usability of a technological tool dedicated to health and self-care in patients with multimorbidity in primary care. METHODS: A descriptive observational cross-sectional usability study was performed framed in the clinical trial in the primary care health centers of Madrid Health Service of the TeNDER (Affective Based Integrated Care for Better Quality of Life) project. The TeNDER technological tool integrates sensors for monitoring physical and sleep activity along with a mobile app for consulting the data collected and working with self-management tools. This project included patients over 60 years of age who had one or more chronic diseases, at least one of which was mild-moderate cognitive impairment, Parkinson disease, or cardiovascular disease. From the 250 patients included in the project, 38 agreed to participate in the usability study. The usability variables investigated were effectiveness, which was determined by the degree of completion and the total number of errors per task; efficiency, evaluated as the average time to perform each task; and satisfaction, quantified by the System Usability Scale. Five tasks were evaluated based on real case scenarios. Usability variables were analyzed according to the sociodemographic and clinical characteristics of patients. A logistic regression model was constructed to estimate the factors associated with the type of support provided for task completion. RESULTS: The median age of the 38 participants was 75 (IQR 72.0-79.0) years. There was a slight majority of women (20/38, 52.6%) and the participants had a median of 8 (IQR 7.0-11.0) chronic diseases. Thirty patients completed the usability study, with a usability effectiveness result of 89.3% (134/150 tasks completed). Among the 30 patients, 66.7% (n=20) completed all tasks and 56.7% (17/30) required personalized help on at least one task. In the multivariate analysis, educational level emerged as a facilitating factor for independent task completion (odds ratio 1.79, 95% CI 0.47-6.83). The median time to complete the total tasks was 296 seconds (IQR 210.0-397.0) and the median satisfaction score was 55 (IQR 45.0-62.5) out of 100. CONCLUSIONS: Although usability effectiveness was high, the poor efficiency and usability satisfaction scores suggest that there are other factors that may interfere with the results. Multimorbidity was not confirmed to be a key factor affecting the usability of the technological tool. TRIAL REGISTRATION: Clinicaltrials.gov NCT05681065; https://clinicaltrials.gov/study/NCT05681065.

A dyadic perspective on parent-child dyadic coping in children with a chronic condition.

OBJECTIVE: In this study, we examined the extent to which parents and their children with a chronic condition communicate their stress to one another and whether stress communication is associated with different forms of dyadic coping. METHODS: In a sample of 239 parent-child dyads, self-reported stress communication and different forms of perceived dyadic coping (i.e., emotion-oriented, problem-oriented, and negative dyadic coping) were assessed using a cross-sectional design. RESULTS: We first found that children's stress communication was positively associated with more positive (r = 0.28, p < .001) and less negative dyadic coping responses by children (r = -0.22, p < .001). Children's stress communication was also associated with more positive (r = 0.52, r = 0.45, p's < 0.001), and less negative dyadic coping responses by parents (r = -0.19, p < .001). Using dyadic data of children with a chronic condition and their parents, we found that more stress communication of children was associated with healthier coping responses of both children (perceived emotion-oriented dyadic coping: ß = 0.23, p < .001) and parents (perceived emotion-oriented dyadic coping: ß = 0.33, p < .001; perceived problem-oriented dyadic coping: ß = 0.22, p < .001). CONCLUSION: This underscores the importance of communication and adaptive coping strategies of parents and children in the context of a child's chronic condition. These findings may help us find ways to support children and their parents to optimally communicate about and deal with their stress.

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.

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.

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.

Proactive Identification of Patients with Diabetes at Risk of Uncontrolled Outcomes during a Diabetes Management Program: Conceptualization and Development Study Using Machine Learning.

BACKGROUND: The growth in the capabilities of telehealth have made it possible to identify individuals with a higher risk of uncontrolled diabetes and provide them with targeted support and resources to help them manage their condition. Thus, predictive modeling has emerged as a valuable tool for the advancement of diabetes management. OBJECTIVE: This study aimed to conceptualize and develop a novel machine learning (ML) approach to proactively identify participants enrolled in a remote diabetes monitoring program (RDMP) who were at risk of uncontrolled diabetes at 12 months in the program. METHODS: Registry data from the Livongo for Diabetes RDMP were used to design separate dynamic predictive ML models to predict participant outcomes at each monthly checkpoint of the participants' program journey (month-n models) from the first day of onboarding (month-0 model) up to the 11th month (month-11 model). A participant's program journey began upon onboarding into the RDMP and monitoring their own blood glucose (BG) levels through the RDMP-provided BG meter. Each participant passed through 12 predicative models through their first year enrolled in the RDMP. Four categories of participant attributes (ie, survey data, BG data, medication fills, and health signals) were used for feature construction. The models were trained using the light gradient boosting machine and underwent hyperparameter tuning. The performance of the models was evaluated using standard metrics, including precision, recall, specificity, the area under the curve, the F1-score, and accuracy. RESULTS: The ML models exhibited strong performance, accurately identifying observable at-risk participants, with recall ranging from 70% to 94% and precision from 40% to 88% across the 12-month program journey. Unobservable at-risk participants also showed promising performance, with recall ranging from 61% to 82% and precision from 42% to 61%. Overall, model performance improved as participants progressed through their program journey, demonstrating the importance of engagement data in predicting long-term clinical outcomes. CONCLUSIONS: This study explored the Livongo for Diabetes RDMP participants' temporal and static attributes, identification of diabetes management patterns and characteristics, and their relationship to predict diabetes management outcomes. Proactive targeting ML models accurately identified participants at risk of uncontrolled diabetes with a high level of precision that was generalizable through future years within the RDMP. The ability to identify participants who are at risk at various time points throughout the program journey allows for personalized interventions to improve outcomes. This approach offers significant advancements in the feasibility of large-scale implementation in remote monitoring programs and can help prevent uncontrolled glycemic levels and diabetes-related complications. Future research should include the impact of significant changes that can affect a participant's diabetes management.

Using mHealth to Improve Communication in Adult Day Services Around the Needs of People With Dementia: Mixed Methods Assessment of Acceptability and Feasibility.

BACKGROUND: Adult day services (ADS) provide community-based health care for older adults with complex chronic conditions but rely on outdated methods for communicating users' health information with providers. CareMOBI, a novel mobile health (mHealth) app, was developed to address the need for a technological platform to improve bidirectional information exchange and communication between the ADS setting and providers. OBJECTIVE: This study aims to examine the feasibility and acceptability of CareMOBI in the ADS setting. METHODS: A concurrent-triangulation mixed methods design was used, and participants were client-facing ADS staff members, including direct care workers (paid caregivers), nurses, and social workers. Interviews were conducted to describe barriers and facilitators to the adoption of the CareMOBI app. The acceptability of the app was measured using an adapted version of the Technology Acceptance Model questionnaire. Data were integrated into 4 themes as anchors of an informational matrix: ease of use, clinical value, fit within workflow, and likelihood of adoption. RESULTS: A mix of ADS staff (N=22) participated in the study. Participants reported high levels of acceptability across the 4 domains. Qualitative findings corroborated the questionnaire results; participants viewed the app as useful and were likely to implement CareMOBI in their practice. However, participants expressed a need for proper training and technical support throughout the implementation process. CONCLUSIONS: The CareMOBI app has the potential to improve care management in the ADS setting by promoting effective communication through an easy-to-use and portable method. While the integration of CareMOBI is acceptable and feasible, developing role-specific training modules and technical assistance programs is imperative for successful implementation within the ADS setting.

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.

Reingreso hospitalario a 30 días en pacientes pediátricos con enfermedades crónicas complejas / Thirty-day readmissions in children with complex chronic conditions

Introducción: La tasa de reingreso hospitalario a 30 días del alta es una medida de calidad de la atención médica. Los pacientes pediátricos con enfermedades crónicas complejas tienen altas tasas de reingreso. La falla en la transición entre el cuidado hospitalario y domiciliario podría explicar este fenómeno. Objetivos: Estimar la tasa de incidencia de reingreso hospitalario a 30 días en pacientes pediátricos con enfermedades crónicas complejas, estimar cuántos son potencialmente prevenibles y explorar posibles factores asociados a reingreso. Materiales y método: Estudio de cohorte prospectivo incluyendo pacientes hospitalizados con enfermedades crónicas complejas de un mes a 18 años de edad. Se excluyeron pacientes con enfermedad oncológica y cardiopatías congénitas. Se evaluaron el reingreso a 30 días y el reingreso potencialmente prevenible. Se valoraron características sociodemográficas, geográficas, clínicas y de la transición hacia el cuidado domiciliario. Resultados: Se incluyeron 171 hospitalizaciones; dentro de los 30 días reingresaron 28 pacientes (16,4%; IC95% 11,6-22,7). De los 28 reingresos, 23 (82,1%; IC95% 64,4-92,1) fueron potencialmente prevenibles. La enfermedad respiratoria se asoció con mayor probabilidad de reingreso. No se encontró asociación entre el reingreso a 30 días y los factores de la transición al cuidado domiciliario evaluados. Conclusiones: La tasa de reingreso a 30 días en pacientes con enfermedad crónica compleja fue del 16,4%, y el 82,1% fueron potencialmente prevenibles. Únicamente la enfermedad respiratoria se comportó como factor de riesgo para reingreso a 30 días.(AU)

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 hospitalized patients with complex chronic conditions aged one 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.(AU)

Daily Activity Lifelogs of People With Heart Failure: Observational Study.

BACKGROUND: Globally, heart failure (HF) affects more than 64 million people, and attempts to reduce its social and economic burden are a public health priority. Interventions to support people with HF to self-manage have been shown to reduce hospitalizations, improve quality of life, and reduce mortality rates. Understanding how people self-manage is imperative to improve future interventions; however, most approaches to date, have used self-report methods to achieve this. Wearable cameras provide a unique tool to understand the lived experiences of people with HF and the daily activities they undertake, which could lead to more effective interventions. However, their potential for understanding chronic conditions such as HF is unclear. OBJECTIVE: This study aimed to determine the potential utility of wearable cameras to better understand the activities of daily living in people living with HF. METHODS: The "Seeing is Believing (SIB)" study involved 30 patients with HF who wore wearable cameras for a maximum of 30 days. We used the E-Myscéal web-based lifelog retrieval system to process and analyze the wearable camera image data set. Search terms for 7 daily activities (physical activity, gardening, shopping, screen time, drinking, eating, and medication intake) were developed and used for image retrieval. Sensitivity analysis was conducted to compare the number of images retrieved using different search terms. Temporal patterns in daily activities were examined, and differences before and after hospitalization were assessed. RESULTS: E-Myscéal exhibited sensitivity to specific search terms, leading to significant variations in the number of images retrieved for each activity. The highest number of images returned were related to eating and drinking, with fewer images for physical activity, screen time, and taking medication. The majority of captured activities occurred before midday. Notably, temporal differences in daily activity patterns were observed for participants hospitalized during this study. The number of medication images increased after hospital discharge, while screen time images decreased. CONCLUSIONS: Wearable cameras offer valuable insights into daily activities and self-management in people living with HF. E-Myscéal efficiently retrieves relevant images, but search term sensitivity underscores the need for careful selection.

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.

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.

Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study.

Background: Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare. Methods: Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19-28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study. Results: We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality. Conclusion: Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.

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.

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.