Abstract
Background:
Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential.
Objectives:
To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU.
Methods:
This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022.
Results:
A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens.
Conclusions:
Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Introduction
Caring for critically ill children with a high risk of morbidity and mortality in the pediatric intensive care unit (PICU) often requires the involvement of pediatric palliative care (PPC).1–3 Both the American Academy of Pediatrics (AAP) and American College of Critical Care Medicine (ACCCM) recommend the involvement of PPC from the time of diagnosis of a life-threatening condition, with continuation of PPC involvement throughout the illness experience, regardless of goals of care.4–7 Although the AAP recognizes that it is important for all pediatricians to practice “primary palliative care,” it is also crucial to know when to involve the PPC subspecialist.4,8–10 As the majority of end-of-life care in pediatrics occurs in the PICU, the integration of PPC is a crucial component of providing high-quality care in this setting.9,10 A current model for the incorporation of PPC in the PICU involves a tiered approach, utilizing the application of primary palliative care by the PICU providers for all patients, with eventual escalation to PPC referral based on a variety of specific triggers.9,10 Identifying which patients could benefit the most from PPC referral can be difficult and the opportunity for early involvement can be missed.11–13
To address this challenge, the multidimensional Paediatric Palliative Screening scale (PaPaS) was developed in 2013 to identify children that would most benefit from PPC referral. This tool involves five domains: (1) trajectory of disease and impact on daily activities of the child; (2) expected outcome of disease-directed treatment and burden of treatment; (3) symptom and problem burden; (4) preferences of patient, parents, or health care professionals; and (5) estimated life expectancy.14–16 In studies, application of PaPaS has been shown to facilitate early PPC referral for children with life-threatening illness; however, this screen is time-consuming and challenging to integrate into the PICU workflow, which limits its widespread application in this crucial setting. 15
The goals of our study were to (1) create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen (PIPPS), that identifies PICU patients most likely to benefit from PPC involvement; (2) determine if weekly screening with the PIPPS increases the number of PPC consults placed during PICU admission; and (3) describe the characteristics of patients that screen positive versus negative on the PIPPS.
Methods
Study design
We performed a prospective investigational single-center study as part of a quality improvement project in a 24-bed multidisciplinary PICU at a tertiary care children's hospital at Penn State Children's Hospital in Hershey, Pennsylvania. The PICU is staffed by 12 pediatric intensivists, none of whom have additional PPC subspecialty training. Weekly screening was initiated in April 2022 and continued for a six-month period through October 2022. The rates of new PPC consults in the PICU were compared with those from the preceding year, April 2021 through October 2021. During the weekly screening period all patients admitted to the PICU were screened using the PIPPS by two Pediatric Critical Care attendings during a faculty hand-off meeting. During the hand-off, the attending completing a week of clinical service provided a full sign-out to the attending assuming care in a group setting among all available PICU attendings, fellows, and advanced practice providers.
The attending physician assuming care was notified if a patient screened positive for having palliative care needs and which specific areas screened positive. A palliative care consult was subsequently placed at that attending's discretion. If patients had a new PPC consult placed during PICU admission before the weekly screen, one screen was completed to capture the patient's initial data. Patients who were admitted to the cardiothoracic surgery team, were ≥18 years old, or had an established relationship with the palliative care team were excluded from screening. This study was approved by the local Institutional Review Board.
Development of the PIPPS
A multidisciplinary team from pediatric critical care medicine and pediatric palliative medicine met to develop a 7-item screening tool utilizing true-or-false questions (Table 1) based on the existing, validated PaPaS (Table 2). 14 The PaPaS uses 11 questions on a 0 to 4 scale to assess five separate domains. We structured our screening tool, the PIPPS, into two parts: (1) identifying patients who may benefit from a PPC consult and (2) identifying five areas of possible palliative care needs that model the domains on the PaPaS. A screen was considered positive if at least one statement from each part was true.
The Pediatric Intensive Care-Pediatric Palliative Care Screen
PICU, pediatric intensive care unit.
The Paediatric Palliative Screening Scale 14
Score ≥15 indicates PPC could be initiated.
PPC, pediatric palliative care.
Study measures and outcomes
Our primary outcome was the number of new PPC consults placed during PICU admissions. Demographic variables collected included age, sex, race, and ethnicity. Additional clinical variables recorded were presence of a tracheostomy and/or baseline mechanical ventilation at admission, number of days of invasive and noninvasive mechanical ventilation, and any limitations of care at the time of screening. Comorbidities were recorded and classified by organ system, including neurologic, cardiovascular, respiratory, renal/urologic, gastrointestinal, hematologic/immunologic, metabolic, genetic, and oncologic. Prematurity, technology dependence, and history of solid organ or bone marrow transplantation were also recorded. Primary admitting diagnoses were recorded and categorized into trauma, surgical nontrauma, medical nononcology, and medical oncology. We also noted if a patient was being considered for a new tracheostomy or feeding tube placement.
Statistical analysis
Descriptive data were reported as median ± interquartile range (IQR). Comparative analyses included Mann–Whitney U test for continuous variables and Fisher's exact two-tailed test or chi-squared test for categorical variables depending on sample size. Type I error was set as 0.05. Statistical analyses were completed using Microsoft Excel 17 and Vassar Stats. 18
Results
A total of 162 screens were completed on 124 unique patients during the six-month screening period between April and October 2022. Twenty-six patients were screened more than once; 18 patients were screened twice, 4 patients were screened three times, and 4 patients were screened four times. Of the 162 total screens, 47 were positive (29%) and 115 were negative (71%). The 47 positive screens represent 29 individual patients. Patients were screened more than once if prior screens were negative or if positive screens did not result in PPC consult. Fourteen new PPC consults were placed from the PICU during this screening period; five consults were placed before completion of their first screen, and nine consults were placed after the patient screened positive. Three patients had consults placed after their first positive screen, four after their second positive screen, and two after their third positive screen. There were 514 PICU admissions during the screening period; 1 PPC consult was placed for every 36.7 admissions. For comparison, during the same time period in 2021, 10 new PPC consults were placed from the PICU and there were 414 PICU admissions; 1 PPC consult was placed for every 41.4 admissions.
There was no significant difference in age, race, or ethnicity between patients who screened positive and those that screened negative (Table 3). There was a statistically significant difference in sex, with females accounting for 60% of positive screens but only 37% of negative screens (p = 0.009). Patients who screened positive had significantly more days of invasive mechanical ventilation (median 4 days, IQR = 0.5–7.5 days vs. median 1 day, IQR = 0–4 days, p = 0.001), noninvasive mechanical ventilation (median 1 day, IQR = 0–5 days vs. median 0 days, IQR = 0–1 days, p = 0.025), and total days of mechanical ventilation (median 7 days, IQR = 4.5–12 days vs. 2 days, IQR = 1–5 days, p < 0.001).
Patient Demographics and Admission Characteristics Compared Between Positive and Negative Screens
Data are given as n (%) unless otherwise stated.
IQR, interquartile range.
There was no statistically significant difference in the presence of limitations to care or resuscitation status at the time of admission or consideration for new tracheostomy or feeding tube placement. In addition, there was no difference in primary diagnosis at the time of admission.
Patients who screened positive had significantly more admission comorbidities than those who screened negative (median 4, IQR = 1–5 vs. median 1, IQR = 0–2, p < 0.001) (Table 4). Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Neurologic (64% vs. 17%, p < 0.001), respiratory (60% vs. 22%, p < 0.001), and gastrointestinal (32% vs. 5%, p < 0.001) comorbidities, as well as technology dependence (57% vs. 5%, p < 0.001) and presence of congenital or genetic defects (26% vs. 10%, p = 0.013), were significantly more common among positive screens.
Admission Comorbidities Compared Between Positive and Negatives Screens
Data are given as n (%) unless otherwise stated.
Screener 1 completed a total of 89 screens and screener 2 completed a total of 118 screens (Table 5). There were 117 screens completed by a single screener and 45 (28%) screens completed by both screeners. There was no significant difference (p = 0.175) between results with 1 screener [30 (26%) positive, 87 (74%) negative] and two screeners [17 (38%) positive, 28 (62%) negative]. There was 100% concordance between the two screeners in answering Part 1 questions with 96% to 100% concordance in answering Part 2 questions. Overall, despite slight variation in some of the individual answers, there was 100% agreement between the two screeners in identifying positive and negative screens.
Results Compared Between Screeners
Data are given as n (%).
Of the 47 positive screens, 14 positive screens led to PPC consults, whereas 33 positive screens did not (Table 6). There were 29 individual patients represented by the 47 positive screens for an overall PPC consult rate for patients with a positive PIPPS of 48%. The primary reasons for lack of consultation were (1) the primary team feeling it was not indicated at the time and (2) the family declining PPC involvement at the time. The only statistically significant difference between the positive screens that had PPC consults placed and the positive screens that did not have PPC consults placed was days of invasive mechanical ventilation (median 7 days, IQR = 4.25–11.5 days vs. 2 days, IQR = 0–5 days, p = 0.025).
Patient Demographics, Admission Characteristics, and Admission Comorbidities Compared Between Positive Screens With a Pediatric Palliative Care Consult Placed and Without a Pediatric Palliative Care Consult Placed
Data are given as n (%) unless otherwise stated.
Discussion
Although PPC has long been part of the care of seriously ill sick children, it has only recently been developed as its own subspecialty. 8 The PPC team composition is highly variable among children's hospitals, and may include physicians, advance practice providers, nurse coordinators, social workers, child life specialists, pharmacists, chaplains, psychologists, rehabilitation therapists, and more. 6 The benefits of a PPC referral are seen in the patient, their families, their communities, and their health care providers. 19 The patients and their family benefit from the development of a longitudinal relationship throughout their disease course. The PPC team can serve as impartial listeners and help delineate the patient and family's ever evolving goals and communicate them to the primary team. They can also provide bereavement support to families and communities following the death of a child.
The involvement of the PPC team can benefit the primary team by sharing the emotional and psychological burden of treating children with life-threatening illness and by facilitating on-going conversations between the primary team, the patient, and the patient's family. Furthermore, the PPC team serves as a resource for trainees in the development of their own primary palliative care skills. Overall, the additive result of PPC referral is an improvement in care, such that the AAP recommends that “all large health care organizations serving children with life threatening conditions have dedicated interdisciplinary PPC…teams.” 8
As our primary outcome, we found that weekly use of the PIPPS can increase the number of PPC consults placed during PICU admission, with 10 PPC consults placed over a six-month period in 2021 versus 14 PPC consults placed over a six-month period in 2022. There was an overall increase in number of PICU admissions from 2021 to 2022, but even when comparing the rate of PPC consult to number of admissions, there was still an increase with use of the PIPPS.
We did not include severity of illness markers or specific diagnoses as part of this study. Anecdotally, we saw a significant increase in admissions to the PICU of previously healthy children presenting with respiratory illnesses in 2022, similar to the trend seen across the country. 20 These children would be unlikely to screen positive on the PIPPS and require PPC involvement during their PICU admissions; thus, it is possible use of the PIPPS can lead to an even larger relative increase in PPC consults when used in a time period of more typical PICU admission numbers and diagnoses.
Although no differences in age, race, or ethnicity were observed between positive and negative screens, there was an unexpected female predominance of positive screens that cannot be explained easily. When reviewing the patients with positive screens, there was no clear difference in diagnosis or genetic condition with a prevalence for the female sex that explains these results. We hypothesize that with the overall small sample size of this study, this may not represent a true finding that is repeatable across additional, larger studies. Patients who screened positive seemed sicker overall with more days of invasive, noninvasive, and total ventilation and a higher rate of intubation; however, this difference did not meet statistical significance (p = 0.057).
The number of patients who were being considered for new tracheostomy or feeding tube placement or had limitations to care or resuscitation in place was too small in this study to draw any meaningful conclusions about how goals of care decisions relate to the PIPPS and PPC consults.
Overall, the most commonly observed comorbidities affected the neurologic, respiratory, and gastrointestinal organ systems, with congenital or genetic defects, prematurity or neonatal complications, or technology dependence also frequently occurring. Patients who screened positive had significantly more comorbidities present at the time of PICU admission, implying that chronic illness plays a large role in differentiating between positive and negative PIPPS. There was no difference, however, in number or type of comorbidities when comparing positive PIPPS with a PPC consult placed to positive PIPPS without a PPC consult placed. So, while existing comorbidities played a role in whether patients screened positive, they did not appear to play a detectable role in whether the treating clinician felt that a PPC consult was warranted. Our data suggest that the PIPPS is well-designed to detect chronically ill children with an acute illness requiring PICU admission who would benefit most from PPC involvement.
The ability of the PIPPS to identify previously healthy children with an acute, life-threatening illness or injury who would benefit from PPC consultation is important, because PPC involvement in this population is effective21–23 and requires additional study. Screening at more frequent intervals can likely identify more patients with acute life-threatening conditions, who tend to have shorter lengths of stay than those with chronic conditions.
For the purpose of this study, weekly screens were conducted by two clinicians who were involved in the development of the PIPPS but who were often unfamiliar with each patient before completing the PIPPS. Even under these circumstances, the PIPPS was fast and easy to administer, and presumably, it would be even easier for the treating clinician familiar with each patient to complete the screen. The majority of screens were completed by only one of the two screeners; however, the 45 screens that were completed by both screeners were analyzed to assess interrater reliability, and the overall agreement between the two screeners (positive vs. negative PIPPS) was 100%. The agreement for individual screening questions was also excellent, ranging from 96% to 100%. It did not appear that use of multiple screeners increased the chances of patients screening negative or positive.
Although only 14 of the 29 patients with positive PIPPS had a PPC consult placed, 5 patients had a PPC consult placed before their first screen, and 6 patients required multiple positive PIPPS before a PPC consult was actually placed. We were unable to identify any specific factors that differentiate positive PIPPS that lead to a PPC consult and positive PIPPS that did not lead to a PPC consult. Anecdotally, treating clinicians often felt that it was “too early” in the patient's PICU course at the time of first positive PIPPS to involve the PPC team, likely reflecting a well-documented stigma of health care providers and PPC.24,25 By the time of the second or third positive screen, clinicians were increasingly comfortable with involving the PPC team, presumably because of the patient's clinical decline or lack of improvement and prolonged PICU admission. There were also several instances during the study period of PPC consults being placed before the PIPPS was actually being completed, with treating clinicians reporting that they had already considered and placed a PPC consult because they knew the patient was going to screen positive, which can be a sign of culture change within the PICU.
This study has several limitations, primarily the use of two clinicians involved with the development of the PIPPS to complete the weekly screens. The reproducibility of these results among clinicians not involved in the development of the screening tool needs to be demonstrated. The tool may require simplification for successful use at institutions not familiar with its development. The overall small patient numbers prevented drawing any meaningful conclusions for some of the examined variables. Also, given the ongoing SARS-CoV-2 pandemic and changes in the epidemiology of pediatric respiratory illnesses during the study period,26–30 these results may not be generalizable to typical PICU patient populations outside of this specific time frame.
Conclusion
Weekly use of a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult and increase the number of PPC consults placed during PICU admission. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive using the PIPPS.
Footnotes
Authors' Contributions
All authors made substantial contributions to the conception and design of this study. C.H.H., E.W.J.K., and K.M.E. made substantial contributions to the acquisition of data and drafted the article. K.M.E. completed all data analysis. All authors participated actively in the revision of the article for important intellectual content and have approved the final version of the article as submitted.
Funding Information
No funding was received for this article.
Author Disclosure Statement
No competing financial interests exist.
