Exploring the use of a digital therapeutic intervention to support the pediatric cardiac care journey: Qualitative study on clinician perspectives.

Pediatric heart disease currently effects over one million infants, children, and adolescents in the United States alone. Unlike the adult population, pediatric patients face a more uncertain path with factors relating to their growth and maturation creating levels of complexity to their care management. With mobile phones increasingly being utilized amongst adolescents, digital therapeutics tools could provide a platform to help patients and families manage their condition. This study explored clinicians' views on the use of a digital therapeutic program to support pediatric heart disease management. Using the principles from user-centered design, semi-structured interviews were conducted with 4 cardiologists, 3 nurse practitioners and 1 cardiology fellow at the Hospital for Sick Children. All interview transcripts underwent inductive thematic analysis using Braun and Clarke's iterative six-phase approach. To further contextualize the analytic interpretation of the study findings, Eakin and Gladstone's value-adding approach was used. Five themes were identified: (i) multidisciplinary model of care; (ii) patient care needs change over time; (iii) treatment burden and difficulties in care management; (iv) transition to adulthood; and (v) filling care gaps with digital health. Clinicians valued the opportunity to monitor a patient's health status in real-time, as it allowed them to modify care regimens on a more preventive basis. However, with adolescent care often varying according to the patient's age and disease severity, a digital therapeutic program would only be valuable if it was customizable to the patients changing care journey. Digital therapeutic programs can ease the process of self-care for adolescents with heart disease throughout the growth and maturation of their care journey. However, to ensure the sustained use of a program, there is a need to work collaboratively with patients, caregivers, and clinicians to ensure their lived experiences guide the design and delivery of the overall program.

Textile-based Wearable to Monitor Heart Activity in Paediatric Population: A Pilot Study.

Background: Cardiac monitoring for children with heart disease still employs common clinical techniques that require visits to hospital either in an ambulatory or inpatient setting. Frequent cardiac monitoring, such as heart rate monitoring, can limit children's physical activity and quality of life. The main objective of this study is to evaluate the performance of a textile-based device (SKIIN) in measuring heart rate (HR) in different tasks: lying down, sitting, standing, exercising, and cooling down. Methods: Twenty participants including healthy children and children with heart disease were included in this study. The difference between the HRs recorded by the SKIIN was compared with a reference electrocardiogram collection by normalized root mean squared error. Participants completed a questionnaire on their experience wearing the textile device with additional parental feedback on the textile device collected. Results: Participants had the median age of 14 years (range: 10-17 years), with body mass index 23.1 ± 3.8 kg/m2 and body surface area 1.70 ± 0.25 m2. The HR recorded by SKIIN and reference system significantly changes between tasks (P < 0.001), while not significantly different from each other (P > 0.05). The normalized root mean squared error was 3.8% ± 3.0% and 3.6% ± 3.7% for healthy and the heart disease groups, respectively. All participants found the textile device non-irritating and easy to wear. Conclusions: This study provides proof of concept that HR can be robustly and conveniently monitored by smart textiles, with similar accuracy to standard-of-care devices.

Contexte: Encore aujourd'hui, la surveillance cardiaque chez les enfants atteints de cardiopathie repose sur des techniques cliniques courantes qui doivent être réalisées à l'hôpital, en soins ambulatoires ou en contexte d'hospitalisation. Chez les enfants, la surveillance cardiaque répétée, comme c'est le cas pour la fréquence cardiaque (FC), peut limiter leurs activités physiques et leur qualité de vie. La présente étude évalue principalement la performance d'un dispositif textile (SKIIN) dans la mesure de la FC pendant différentes tâches : en position couchée, en position assise, en position debout, pendant l'activité physique et pendant le retour au calme. Méthodologie: Vingt participants, y compris des enfants en santé et des enfants présentant une cardiopathie, ont été inclus dans l'étude. La différence entre la FC enregistrée par le dispositif SKIIN et la FC mesurée par une électrocardiographie (ECG) de référence a été comparée à l'aide de la racine de l'erreur quadratique moyenne normalisée (REQMN). Les participants ont rempli un questionnaire sur leur expérience avec le dispositif textile, et les commentaires des parents sur ce dispositif ont été recueillis. Résultats: Les participants avaient un âge médian de 14 ans [10-17 ans], un indice de masse corporelle de 23,1 ± 3,8 kg/m2 et une surface corporelle de 1,70 ± 0,25 m2. La FC enregistrée par le système SKIIN et le système de référence variait significativement d'une tâche à l'autre (p < 0,001), mais il n'y avait pas de différence significative entre les deux systèmes (p > 0,05). La REQMN était de 3,8 ± 3,0 % pour le groupe en santé et de 3,6 ± 3,7 % pour le groupe présentant une cardiopathie. Tous les participants ont trouvé que le dispositif textile ne causait pas d'irritation et qu'il était facile à porter. Conclusions: Cette étude démontre que les textiles intelligents permettent de surveiller la FC de façon fiable et pratique, avec une exactitude semblable à celle des dispositifs de référence.

Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart-Healthy Lifestyle.

Background Heart-healthy lifestyles promote lifelong cardiovascular health. However, patients with hypertrophic cardiomyopathy are often advised to avoid strenuous exercise because of the risk of sudden cardiac death. Given these restrictions, this study explored youth and parent perceptions of a heart-healthy lifestyle and the barriers and facilitators to this lifestyle. Methods and Results Youth and parents were purposefully recruited at 2 Canadian hospitals for this photovoice project. Participants were given cameras and took pictures of everyday heart-healthy or heart-unhealthy choices. Photos were discussed during one-on-one qualitative interviews with youth and parents separately to understand the photos' meaning and significance. Inductive descriptive thematic analysis was employed. A total of 16 youth (median age, 14.4 years [range, 10.5-17.7 years]; 63% boys) and 16 parents (100% women) participated. A total of 15 youth were activity restricted. Data analysis revealed 7 categories organized into perceptions of healthy living (health is holistic and individualized) and factors influencing engagement in healthy living (self-awareness, ownership and autonomy, feeling restricted and peer pressure, support from parents, and support from the cardiologist). Participants had a complex understanding of health and discussed the importance of physical, mental, and social well-being. Youth used self-awareness and taking responsibility as facilitators of healthy living. Healthy living was shaped by peers, parent role-modeling, and cardiologist recommendations. Conclusions This study depicts the realities for youth with hypertrophic cardiomyopathy and can be used to inform the development of responsive interventions. Holistic, patient-specific interventions may be more successful, and strategies such as shared decision making may be important to promote self-awareness and autonomy.

Rapid Advancement in Enteral Nutrition Does Not Affect Systemic Inflammation and Insulin Homeostasis Following Pediatric Cardiopulmonary Bypass Surgery.

OBJECTIVES: To determine impact of enteral nutrition delivery on the relationship among inflammation, insulin resistance, and outcomes following pediatric cardiopulmonary bypass surgery. DESIGN: Pilot, randomized study analyzed according to intention-to-treat analysis. SETTING: Pediatric cardiac ICU. PATIENTS: Infants (≤ 6 mo) undergoing cardiopulmonary bypass. INTERVENTIONS: Patients randomly assigned to receive rapid escalation to enteral nutrition reaching goal feeds by 27 hours or standard feeding practice reaching goal feeds by 63 hours. Feeds were initiated on the first postoperative day. MEASUREMENTS AND MAIN RESULTS: Fifty patients were randomized equally to study arms. Patients were a median (interquartile range) of 16 days old (7-110 d old), undergoing biventricular surgery (88%) with a median cardiopulmonary bypass time of 125 minutes (105-159 min). Serial blood samples were drawn before and after cardiopulmonary bypass, cardiac ICU admission, and every 12 hours (up to 96 hr) for glucose, insulin, and cytokines (interleukin-1α, interleukin-6, interleukin-8, interleukin-10, and tumor necrosis factor-α) levels. Glucose-insulin ratio was calculated to quantify insulin resistance. Patient characteristics, time to enteral nutrition initiation, enteral nutrition interruptions, and insulin administration were similar across intervention arms. FF reached goal feeds at similar intervals as standard feeding (39 hr [30-60 hr] vs 60 hr [21-78 hr]; p = 0.75). No difference in cytokine, insulin, or glucose-insulin ratio was noted between groups. Higher inflammation was associated with increased glucose-insulin ratio and higher risk of adverse events. In multivariable models of interleukin-8, FF was associated with increased glucose-insulin ratio (estimate of effect [95% CI], 0.152 [0.033-0.272]; p = 0.013). Although higher interleukin-8 was associated with an elevated risk of adverse event, this relationship was possibly mitigated by FF (odds ratio [95% CI], 0.086 [0.002-1.638]; p = 0.13). CONCLUSIONS: A FF strategy was not associated with changes to early enteral nutrition delivery. Inflammation, insulin resistance, and morbidity were similar, but FF may modify the relationship between inflammation and adverse event. Multicenter nutrition studies are possible and necessary in this vulnerable population.