Caregivers are responsible for the in-home care of children with chronic medical conditions (CMCs) and may have care-related questions in order to support the child’s higher quality of life. We propose using a digital health platform, the personal health library (PHL), facilitating collection, organization, utilization, storage, and retrieval of health information, that will allow us to develop an mHealth smartphone app to facilitate patient/caregiver engagement and self-care management of children with CMCs.

Pilot Application of the PHL in the Pediatric Chronic Medical Conditions Population: We will design the PHL to collect and integrate data from health and non-health information, in various formats and modalities, including 1) Parent/caregiver-reported data; 2) Clinical data and; 3) Social determinants of health (SDoH) data; 4) Observations of Daily Living (ODL) data including the PedsQL Parent Questionnaire and the Functional Status Scale. The app will be customized to provide information regarding training in post-acute hospitalization care and deliver information on troubleshooting medical technology care, i.e. tracheostomy care.

We expect that the design of the PHL application will ultimately provide a layer of support for parents and caregivers of children with CMCs for whom home health is not available following hospitalization.

Shunt-related adverse events are frequent in infants after modified Blalock–Taussig despite use of acetylsalicylic acid prophylaxis. A higher incidence of acetylsalicylic acid-resistance and sub-therapeutic acetylsalicylic acid levels has been reported in infants. We evaluated whether using high-dose acetylsalicylic acid can decrease shunt-related adverse events in infants after modified Blalock–Taussig.

In this single-centre retrospective cohort study, we included infants ⩽1-year-old who underwent modified Blalock–Taussig placement and received acetylsalicylic acid in the ICU. We defined acetylsalicylic acid treatment groups as standard dose (⩽7 mg/kg/day) and high dose (⩾8 mg/kg/day) based on the initiating dose.

There were 34 infants in each group. Both groups were similar in age, gender, cardiac defect type, ICU length of stay, and time interval to second stage or definitive repair. Shunt interventions (18 versus 32%, p=0.16), shunt thrombosis (14 versus 17%, p=0.74), and mortality (9 versus 12%, p=0.65) were not significantly different between groups. On multiple logistic regression analysis, single-ventricle morphology (odds ratio 5.2, 95% confidence interval of 1.2–23, p=0.03) and post-operative red blood cells transfusion ⩾24 hours [odds ratio 15, confidence interval of (3–71), p<0.01] were associated with shunt-related adverse events. High-dose acetylsalicylic acid treatment [odds ratio 2.6, confidence interval of (0.7–10), p=0.16] was not associated with decrease in these events.

High-dose acetylsalicylic acid may not be sufficient in reducing shunt-related adverse events in infants after modified Blalock–Taussig. Post-operative red blood cells transfusion may be a modifiable risk factor for these events. A randomised trial is needed to determine appropriate acetylsalicylic acid dosing in infants with modified Blalock–Taussig.

Numerous advances in surgical techniques and understanding of single-ventricle physiology have resulted in improved survival. We sought to determine the influence of various demographic, perioperative, and patient-specific factors on the survival of single-ventricle patients following stage 1 palliation at our institution.

We conducted a retrospective study of all single-ventricle patients who had undergone staged palliation at our institution over an 8-year period. Data were collected from the Society of Thoracic Surgeons Congenital Heart Surgery database and from patient charts. Information on age, weight at stage 1 palliation, prematurity, genetic abnormalities, non-cardiac anomalies, ventricular dominance, and type of palliation was collected. Information on mortality and unplanned reinterventions was also collected.

A total of 72 patients underwent stage 1 palliation over an 8-year period. There were 12 deaths before and one death after stage 2 palliation. There was no hospital mortality following Glenn or Fontan procedures. On univariate analysis, low weight at the time of stage 1 palliation and prematurity were found to be risk factors for mortality following stage 1 palliation. However, multivariable Cox regression analysis revealed weight at stage 1 palliation to be a strong predictor of mortality. The type of stage 1 palliation did not have any influence on the outcome. No difference in survival was noted following the Glenn procedure.

Low weight has a deleterious impact on survival following stage 1 palliation. This is mitigated by stage 2 palliation. The type of stage 1 palliation itself has no bearing on the outcome.

To determine whether the National Nosocomial Infections Surveillance (NNIS) System risk index adequately stratified a population of pediatric patients undergoing cardiac surgery according to the risk of developing surgical site infection (SSI).

A retrospective, case-control study.

An urban tertiary care children's hospital.

Patients who had a median sternotomy performed between January 1,1995, and December 31, 2003, were eligible for inclusion in the study. For all case patients, medical records were reviewed to verify that all patients met the case definition for SSI. Control subjects were chosen randomly from among all patients who underwent median sternotomy during the study period who did not develop SSI.

Thirty-eight patients with SSI and 172 patients without SSI were included. One hundred six patients (50%) were male. The median patient age was 4 months. The sensitivity of the NNIS risk index with cutoff scores of 0 to 1 and 2 to 3 was 20%. The distribution of patients with SSI for an NNIS risk index score of 0 was 0%; for a score of 1, 80%; for a score of 2, 20%; and for a score of 3, 0%. The distribution of patients without SSI for a scores of 0 was 4%; for a score of 1, 87%; for a score of 2, 9%; and for a score of 3, 0%. The area under the receiver-operating characteristic curve (AUC) of the original NNIS risk index was 0.57. The modified risk indices did not perform significantly better, with an AUC range of 0.58 to 0.73.

The NNIS risk index did not adequately stratify pediatric patients undergoing median sternotomy according to their risk of developing an SSI. Various modifications to the risk index yielded only slightly higher AUC values.