Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation

Children and young adults who received tracheostomies or were initiated on long-term ventilation in PICUs

Objectives: To characterize patients who received tracheostomies for airway compromise or were initiated on long-term ventilation for chronic respiratory failure in pediatric intensive care units (PICU), and to examine variation in the incidence of initiation, patient characteristics, and modalities across sites. Design: Retrospective cross-sectional analysis. Settings: Seventy three North American PICUs that participated in the Virtual Pediatric Intensive Care Unit Performance System. Patients: PICU patients admitted between 2009 and 2011. Interventions: None. Measurements and Main Results: Among 115,437 PICU patients, 1.8% received a tracheostomy or were initiated on long-term ventilation; 1034 received a tracheostomy only, 717 were initiated on invasive ventilation (IV), and 381 were initiated on noninvasive ventilation (NIV). Ninety percent had substantial chronic conditions and comorbidities, including more than 50% with moderate or worse cerebral disability upon discharge. Seven percent were initiated after a catastrophic injury/event. Across sites, there was variation in incidence of tracheotomy and initiation of long-term ventilation, ranging 0–4.6%. There also was variation in patient characteristics, time to tracheotomy, number of extubations prior to tracheostomy, and the use of IV versus NIV. Conclusions: While the PICU incidence of initiation of tracheostomies and long-term ventilation was relatively uncommon, it suggests that thousands of children and young adults receive these interventions each year in North American PICUs. The majority of them have conditions and comorbidities that impose on-going care needs, beyond those required by artificial airways and long-term ventilation themselves

Adults with childhood-onset chronic conditions admitted to US pediatric and adult intensive care units

PURPOSE: To compare demographics, intensive care units (ICU) admission characteristics, and ICU outcomes among adults with childhood-onset chronic conditions (COCC) admitted to U.S. pediatric and adult ICUs. MATERIALS AND METHODS: Retrospective cross-sectional analyses of 6,088 adults aged 19–40 years admitted in 2008 to 70 pediatric ICUs that participated in the Virtual Pediatric Intensive Care Unit Performance Systems and 50 adult ICUs that participated in Project IMPACT. RESULTS: COCC were present in 53% of young adults admitted to pediatric units, compared to 9% of those in adult units. The most common COCC in both groups were congenital cardiac abnormalities, cerebral palsy, and chromosomal abnormalities. Adults with COCC admitted to pediatric units were significantly more likely to be younger, have lower functional status, and be non-trauma patients than those in adult units. The median ICU length-of-stay was 2 days and the intensive care unit mortality rate was 5% for all COCC patients with no statistical difference between pediatric or adult units. CONCLUSIONS: There are marked differences in characteristics between young adults with COCC admitted to PICUs and adult ICUs. Barriers to accommodating these young adults may be reasons why many such adults have not transitioned from pediatric to adult critical care

A Core Outcome Set for Pediatric Critical Care

Objectives: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs.Design: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% “critical” and less than 15% “not important” advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components.Setting: Multinational survey.Patients: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates.Measurements and Main Results: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% “critical” and less than 15% “not important” and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set—extended.Conclusions: The PICU core outcome set and PICU core outcome set—extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families