Parental Perception and Measured Functional Status Following Pediatric Critical Illness: A Secondary Analysis of the Survivor Outcomes Study.

OBJECTIVES: We evaluated the concordance between parent/guardian perception of child long-term function and objectively scored long-term functional status using the Functional Status Scale (FSS) among PICU survivors. DESIGN: Secondary analysis of prospective cohort study. SETTING: Urban, tertiary, academic PICU. PATIENTS: PICU patients less than 18 years old were admitted between June and August 2012. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We conducted telephone interviews of parents/guardians of PICU survivors ( n = 77) 6 months post-PICU discharge. We asked parents/guardians to characterize their child's functional status, and we determined FSS scores using scripted interview questions. Concordance between parent/guardian perceptions and FSS scores was assessed, revealing that parent/guardian perceptions of their child's functional status aligned poorly with FSS scores at 6 months (kappa coefficient 0.16). CONCLUSIONS: These findings shed light on a critical disconnect between parent/guardian perspective and our current tools to measure a child's functional status following critical illness. In an era of decreased PICU mortality and increased long-term morbidity, the discordance between parent/guardian perception and available scoring tools in the assessment of long-term functional status highlights a key opportunity to improve communication and anchor expectations for long-term outcomes among PICU survivors.

Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria.

Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, fraught with healthcare providers' biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers' biases and disparities that exist within pediatric palliative care.

Palliative Care Utilization Following Out-of-Hospital Cardiac Arrest in Pediatrics.

OBJECTIVES: Pediatric out-of-hospital cardiac arrest (OHCA) is associated with significant morbidity and mortality. Pediatric palliative care (PPC) services could provide an integral component of the comprehensive care necessary for these patients and their families. The main objectives of this study are to examine the utilization of PPC following OHCA and compare the differences in characteristics between children who received PPC with those who did not. DESIGN: Retrospective cohort study. SETTING: An urban, tertiary PICU. PATIENTS: Children less than 21 years old admitted from October 2009 to October 2019 with an admitting diagnosis of OHCA and minimum PICU length of stay (LOS) of 48 hours. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 283 patient charts reviewed, 118 patient encounters met inclusion criteria. Of those, 34 patients (28.8%) received a PPC consultation during hospitalization. Patients who received PPC had a longer PICU LOS (14.5 vs 4.0 d), a greater number of ventilator days (12.5 vs 4.0 d), and a larger proportion of do-not-resuscitate (DNR) statuses (41% vs 19%). When comparing the disposition of survivors, a greater proportion was discharged to rehab or nursing facilities (47% vs 28%), with no difference in mortality rates (53% vs 50%). In the multivariate logistic regression model, older age, longer LOS, and code status (DNR) were all associated with higher likelihood of PPC utilization. Data were analyzed using descriptive, Mann-Whitney U, and Fisher exact statistics. CONCLUSIONS: Our study demonstrates PPC services following OHCA are underutilized given the high degree of morbidity and mortality. The impact of automatic PPC consultation in all OHCA patients who survive beyond 48 hours should be explored further. Future studies are warranted to understand the benefits and barriers of PPC integration into standard postarrest care for patients and families.