Pediatric Palliative Care Referral Criteria Following Moderate or Severe Traumatic Brain Injuries

Abstract

Introduction/Aims:

Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI while the loss is devastating for families. The aim of the study is to characterize the pediatric population and formulate referral criteria for palliative care (PC) consults who would guide the most beneficial allocation of resources.

Methods:

This is an IRB-approved retrospective chart review study from January 1, 2017, to October 1, 2021, of persons presenting to the emergency department of a 467-bed quaternary pediatric hospital in the midwest with a moderate or severe TBI (ICD-10: S.06.2X and S.06.5X9A). Participants were excluded if they were admitted directly from an outside hospital or if the diagnosis code did not meet criteria.

Results:

N = 33 patients presented with moderate or severe TBI, of which 17 had PC consult. There were no significant between-group demographic differences. Significant differences in clinical and outcome variables formed the basis of proposed referral criteria for specialist PC for children and adolescents sustaining a moderate-to-severe traumatic brain injury.

Discussion:

PC programs are a finite resource and should be available to and focused on those with greatest need. The proposed criteria provide empirically based guidance on when to consult, or consider consulting, specialist pediatric PC. Further testing of these criteria and their relationship with improved outcomes are desirable.

Palliative Care Referral Criteria for Patients with Traumatic Brain Injury

Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents, and the leading cause of mortality in the first year of life.^1,2 Every year, TBIs lead to the admission of >50,000 children and adolescents.¹ In 2017, the estimated pediatric mortality was 5.17 per 100,000 population.³ Among the ∼145,000 children and adolescents (ages 0–19 years) in the United States who survive their TBIs, many are living with lasting cognitive, physical, or behavioral effects of TBIs.⁴

Severe motor impairment, tendon contractures, neuropathic pain syndrome, visual disturbances, and speech and comprehension deficits also cause serious disability that contribute to a step-wise worsening of outcomes.^5,6 In 2010, the estimated lifetime economic cost of TBIs, including direct and indirect medical costs, was ∼$76.5 billion.⁷ Furthermore, many families are often financially unprepared to incur the additional medical costs of caring for a person with TBI. In children, the estimated annual cost of inpatient care is about 1 million dollars. As noted by Herrera-Escobar and Schneider, these sequelae justify consideration of TBIs and other traumatic injuries as chronic conditions.⁸

Caregivers of persons with TBI report many unmet needs including supports for maintaining relationships; long-term emotional and financial support; and advocacy support for the survivor, caregivers, and family.⁹ In addition to the psychological and physical burdens, the acute critical care costs of TBI treatment incurred by families add significant additional burden.¹⁰ The goal of palliative care (PC) is the relief of suffering of individuals and their families affected by serious conditions through the comprehensive assessment and treatment of physical, psychological, social, and spiritual symptoms.⁴

It is a growing field that seeks to improve quality of life for both the patient and the family, from diagnosis to the end of life.⁴ PC aids individuals with a TBI and their caregivers manage multiple symptoms, choose among treatment methodologies, and develop coping skills.⁶ Lack of access to PC has significant consequences; for example, chronically ill neurology patients who do not receive PC have worse symptom control and suffer greater emotional distress.¹¹

Although providers from any discipline provide generalist PC, specialist PC is a limited resource in many settings. Twenty-eight percent of U.S. hospitals lack PC programs, and 25% of hospitals do not meet the joint commission PC staffing standard.¹² With 1.1 million patients diagnosed with nonfatal TBIs every year and limited PC resources, appropriate allocation of specialist PC resources is needed.¹⁰

Adult PC referral criteria include intensive care unit (ICU)/hospitalization for >10 days, age older than 80 years, and more than two comorbidities. In practice, adults are more often referred while admitted to the ICU with serious life-threatening illnesses with possibility of adverse impact on quality of life.¹³ Although progress has been made in developing PC strategies and guidelines for neurological conditions in adults, there are no guidelines for PC in pediatric neurological conditions.^11,13,14 A knowledge gap exists in determining when to involve pediatric PC after a TBI or other neurological injury adversely affecting quality of life and access to psychosocial supports.

Lyons-Warren et al. tested a screening method based on a minimum number of hospital admissions in a year using a matched case–control design.¹¹ While failing to find significant differences in unmet PC needs between those receiving or not receiving PC, they recognized the need to have an objective clinically useful means of identifying those most likely to benefit from specialist PC.

Characterizing the pediatric population involved and establishing referral criteria for PC involvement in persons with TBI will facilitate the referral process and can be subsequently tested and modified to maximize outcomes for affected individuals and their families.^6,10,11 The purpose of this study was to characterize those who received specialist pediatric PC compared with those who did not, to empirically develop candidate PC referral criteria for subsequent evaluation.

Materials and Methods

This retrospective chart review was approved by the institutional review board of a 467-bed quaternary pediatric hospital in the midwest.

Participants

All persons presenting to the emergency department (ED) with a moderate or severe TBI, defined as having a Glasgow Coma Scale (GCS) of 12 or less, and an ICD-10 code for diffuse traumatic brain injury (S.06.2X), traumatic subdural hemorrhage with loss of consciousness (LOC) of any length initial encounter (ICD 10: S06.5X9A), traumatic subarachnoid hemorrhage with LOC of any length initial encounter (S06.5X9A), or traumatic subarachnoid hemorrhage with LOC of length initial encounter (S06.5X9A), from January 1, 2017, to October 1, 2021, were deemed eligible and included.

Persons were excluded if they were admitted directly from an outside hospital or were diagnosed with a brain injury classified by a different ICD-10 diagnostic code than those named above. The list of eligible participants was generated with an electronic medical record query and included the child's age, diagnosis, GCS at presentation in the ED, and the month and year of admission. A sequential participant ID number was used to deidentify the participants.

Procedures

Data extraction was conducted by a clinical research coordinator, PC fellow, and the principal investigator. Thirty-nine variables were collected by chart review and divided into three categories: demographic variables, clinical predictor variables, and clinical outcome variables (Table 1). The WeeFIM score was chosen as an objective measure of postinjury functional outcome. WeeFIM is an 18-item performance measure with subscales for mobility, self-care, and cognition, as well as a total score.¹⁵ To facilitate comparison of functioning across age groups, raw scores were normed and developmental function quotients calculated, which ranged from 14 to >100.¹⁶

Table 1.

Variable Data Collected

Variable	Source	Type	Purpose
Age (years)	EHR	Continuous	Predictor
GCS, at initial presentation	EHR	Categorical	Predictor
GCS, best in first 24 hours after admission	EHR	Categorical	Predictor
Time to follow commands (days)	EHR	Categorical	Predictor
LOC at time of injury	EHR	Dichotomous	Predictor
Downtime (LOC) (minutes)	EHR	Continuous	Predictor
No. of days on ventilator	EHR	Continuous	Predictor
Socioeconomic status (median household income in ZIP code of residence)	EHR	Categorical	Predictor
Calendar season at time of injury	EHR	Categorical	Confounder
Gender	EHR	Dichotomous	Covariate
Mechanism of injury (abusive head trauma vs. nonabusive head trauma)	EHR	Dichotomous	Covariate
Presence of DME	EHR	Dichotomous	Covariate
Type of DME	EHR	String	Descriptor
No. of medications ordered by PC provider	EHR	Categorical	Covariate
Length of admission (days)	EHR	Categorical	Covariate
Length of PICU admission (days)	EHR	Categorical	Covariate
Time to PC consults (days)	EHR	Categorical	Outcome
Whether multiple family members admitted from same event	EHR	Dichotomous	Covariate
Death of another person during injury event	EHR	Dichotomous	Covariate
Duration from PC consult to patient death (days)	EHR	Categorical	Outcome
Hospice involvement	EHR	Dichotomous	Outcome
Presence of breathing aids	EHR	Dichotomous	Covariate
Death at desired location	EHR	Categorical	Outcome
No. of emergency department visits after PC involvement	EHR	Categorical	Outcome
No. of inpatient admissions after PC involvement	EHR	Categorical	Outcome
Length of inpatient admissions after PC involvement (days)	EHR	Categorical	Outcome
No. of PICU admissions after PC involvement	EHR	Categorical	Outcome
Length of PICU admission after PC involvement (days)	EHR	Categorical	Outcome
No. of clinically relevant phone calls to PC	EHR	Categorical	Outcome
No. of clinically relevant phone calls to physiatry after PC consult	EHR	Categorical	Outcome
Length from date of injury to death (days)	EHR	Categorical	Outcome
Length from PC consult to death (days)	EHR	Categorical	Outcome
Incidence of goals-of-care discussion	EHR	Categorical	Outcome
Medical division leading goals-of-care discussion	EHR	Descriptive	Outcome
Indication of IEP/school needs	EHR	Dichotomous	Outcome
Indication of counseling needs	EHR	Dichotomous	Outcome
Indication of DME needs	EHR	Dichotomous	Outcome
Functional level at admission to inpatient rehabilitation	WeeFIM	Nominal	Outcome
Functional level at discharge from inpatient rehabilitation	WeeFIM	Nominal	Outcome

DME, durable medical equipment; EHR, electronic health record; GCS, Glasgow Coma Scale; IEP, individual education plan; LOC, loss of consciousness; PC, palliative care; PICU, pediatric intensive care unit.

Consult criteria were based on those variables that differed significantly between the two groups; consideration criteria were based on variables that did not differ significantly but trended toward significance or were still deemed clinically meaningful by the investigators. The consideration criteria values were set at one-half of the standard deviation below the mean value of those who did not receive a PC consultation.

Analysis

To examine group differences and factors associated with PC referral, Fisher's exact, chi-square, or Wilcoxon rank sum test was used as appropriate. Small sample size and missing values limited the use of multivariate analysis. Continuous data are presented as mean (standard deviation) and median (IQR) and categorical data as frequency and percentage. The analysis was performed using SAS (version 9.4; SAS Institute, Inc., Cary, NC).

Results

A total of 33 eligible children were included in the study, 4 of whom died during the data collection period. Every child who died was referred to PC before their death. Seventeen children (52%) were referred to PC from the pediatric intensive care unit (PICU) for family support and assistance with goals-of-care discussions. There were no statistically significant difference in demographic characteristics between those who were referred to PC and those who were not referred (Table 2). The subset of individuals who received a PC consult are characterized in Table 3. The mean time from ED presentation to PC consult was 5.5 days; for those who died, the mean time from PC consult to death was 3.3 days.

Table 2.

Demographic Characteristics of Participants

	PC consult		p
	Yes, n = 17	No, n = 16	p
Age, years
Mean (SD)	9.3 (6.7)	8.3 (6.5)	0.83
Median (min–max)	9 (0.13–20)	8 (0.25–17)
Gender, n (%)
Female	4 (23.5)	5 (31.3)	0.71
Male	13 (76.5)	11 (68.8)
Socioeconomic status
Mean (SD)	$52,420 ($26,002)	$47,840 ($17,147)	0.58
Median (min–max)	$52,921 ($10,554–125,450)	$52,528 ($20,063–$78,924)
Race, n (%)
White	12 (70.6)	9 (56.3)	0.55
Black	3 (17.7)	5 (31.3)
Mixed	2 (11.8)	1 (6.3)
Asian	0	1 (6.3)
Other	0	0
Ethnicity, n (%)
Non-Hispanic	17 (100.0)	15 (93.8)	0.48
Hispanic	0	1 (6.3)
Amish, n (%)
Yes	4 (23.5)	3 (18.8)	1.0
No	13 (76.5)	13 (81.3)
Calendar season at time of injury, n (%)
Spring	5 (29.1)	5 (31.3)	0.59
Summer	6 (35.3)	3 (18.8)
Fall	3 (17.7)	6 (37.5)
Winter	3 (17.7)	2 (12.5)

Fisher's exact test for categorical data; Wilcoxon rank sum test for continuous data.

SD, standard deviation.

Table 3.

Palliative Care Outcome Data (n = 17)

		N (%)	M (SD)	Median (min–max)
Time to PC consults (days)		17 (100)	5.5 (9.8)	2 (0–41)
Duration from PC consult to patient death (days)		5 (29.4)	3.3 (3.6)	1.5 (0–10)
Medical division leading goals-of-care discussion	Neurosurgery/PMR/PC/PICU	1 (5.9)
	PC	2 (11.8)
	PICU/PC	9 (53.0)
	PICU/NS/PC	1 (5.9)
	PICU/PC/Surgery	1 (5.9)
	PMR	1 (5.9)
	N/A	2 (11.8)
Incidence of goals-of-care discussion	0	5 (29.4)
	1	7 (41.2)
	2	4 (23.5)
	7	1 (5.9)
Death at desired location (n = 5)	Yes	5 (100)

NS, nonsignificant; PMR, physical medicine and rehabilitation.

Differences in clinical predictor and clinical outcome variables between those who received a PC consult and those who did not are presented in Table 4. There were significant between-group differences in the length of admission, length of PICU admission, and time to follow commands. There was a nonsignificant between-group difference in GCS at presentation, whereas the best GCS score in the initial 24 hours differed significantly (5.2 [3.1] vs. 8.2 [4.1], p = 0.035).

Table 4.

Differences in Clinical Data for Those With and Without Palliative Care Consults

		PC consult		p
		Yes, n = 17	No, n = 16	p
Length of admission (days)	n	17	16	0.0095
	M (SD)	40.1 (25.6)	12.1 (10.7)
	Mdn (min–max)	41 (2–91)	11 (2–38)
Length of PICU admission (days)	n	17	16	0.0059
	M (SD)	15.4 (11.5)	5.8 (8.5)
	Mdn (min–max)	13 (2–44)	3 (1–33)
GCS, at initial presentation	n	12	16	0.0689
	M (SD)	6.3 (3.8)	8.8 (3.2)
	Mdn (min–max)	5.5 (3–15)	10 (3–15)
GCS, best in first 24 hours after admission	n	17	14	0.0349
	M (SD)	5.2 (3.1)	8.2 (4.1)
	Mdn (min–max)	3 (3–11)	7.5 (3–15)
Time to follow commands (days)	n	12	16	0.0022
	M (SD)	11.3 (6.1)	2.9 (3.1)
	Mdn (min–max)	11 (1–20)	2 (1–12)
No. of days on ventilator	n	17	16	0.0004
	M (SD)	10.9 (7.7)	2 (2.9)
	Mdn (min–max)	10 (1–31)	1 (0–12)
Presence of breathing aids at discharge, n (%)	Yes	11 (64.7)	5 (31.3)	0.0844
Presence of breathing aids at discharge, n (%)	No	6 (35.3)	11 (68.8)	0.0844
Indication of IEP/school needs at discharge^*	Missing or preschool	5 (29.5)	6 (37.5)	0.646
	Yes	4 (23.5)	2 (12.5)
	No	8 (47.1)	8 (50.0)
Indication of counseling needs at discharge^*	Yes	9 (52.9)	3 (18.8)	0.2475
	No	7 (41.2)	7 (43.8)
	Underage	1 (5.9)	6 (37.5)
Indication of DME needs at discharge	Yes	12 (70.6)	8 (50.0)	0.2264
Indication of DME needs at discharge	No	5 (29.4)	8 (50.0)	0.2264
Functional level at admission to inpatient rehabilitation	n	11	4	0.0601
	M (SD)	26.1 (14.1)	44.5 (20.2)
	Mdn (min–max)	19 (18–60)	44 (22–68)
Functional level at discharge from inpatient rehabilitation	n	11	4	0.748
	M (SD)	73.2 (30.7)	86.5 (32.7)
	Mdn (min–max)	86 (18–106)	87 (46–126)
Functional level (discharge–admission)	n	11	4	0.0039
	M (SD)	47.1 (26.1)	42 (16.6)
	Mdn (min–max)	47 (0–75)	43 (24–58)

“Not found” and “age” were excluded from p-value calculation.

Fisher's exact test or chi-square test for categorical data; Wilcoxon rank sum test for continuous data.

Proposed criteria to guide PC consultation (Table 5) are segregated into criteria for which PC should be consulted whenever one or more are met, and criteria for which PC consultation should be considered.

Table 5.

Proposed Referral Criteria to Pediatric Palliative Care for Children and Adolescents Sustaining Moderate and Severe Traumatic Brain Injuries

Consult PC	Severe TBI/GCS at presentation ≤8
	GCS best in 24 hours ≤8
	Length of stay exceeds 10 days in PICU or 16 total inpatient days
	Time to follow commands ≥5 days
	Time on ventilator ≥4 days
Consider consulting PC	Durable medical equipment required after discharge
	WeeFIM ≤34 at admission to inpatient rehabilitation
	Change in WeeFIM admission to discharge ≤34
	Counseling indicated postdischarge
	Need for an IEP or other school-related accommodations
	Need for breathing aids after discharge

TBI, traumatic brain injuries.

Discussion

Identifying clinical indicators for specialist pediatric PC consultation maximizes the likelihood of allocating limited resources appropriately, and providing care to those most likely to benefit. We present empirically developed criteria to guide provider decision making regarding when to consult PC and when it is appropriate to consider PC consultation. These criteria are consistent with the distinction made by Lyons-Warren et al. as they represent potential unmet PC, rather than unmet social needs that children and adolescents may have after sustaining a TBI.

Diminished autonomy, the ability to complete tasks without accommodation, is an outcome of TBI.⁶ The proposed consult criteria are consistent with features of a child or adolescent's reduced ability to function autonomously, and thus features that PC may be able to impact, maximizing a child or adolescent's quality of life. PC is a resource for children, adolescents, and families faced with integrating medical information about prognosis and the trajectory of recovery, complex decision making, and care coordination. These are all features of chronic conditions (as noted by Herrera-Escobar and Schneider), and their impact on quality of life is an area of medicine that specialist PC is well equipped to address.⁸

Our data showing no racial differences in PC referral rates differ from those of DeGroote et al., who reported that non-Hispanic Black children with cancer were 1.7 times more likely than non-Hispanic White children to have a PC referral.¹⁷ The data are more consistent with those reported by McKee et al., who found a nonsignificant difference (though lower) in referral rates between non-Hispanic Black and White children undergoing stem cell transplant.¹⁸ Nonetheless, Wallace and Mannix, using national registry data, have shown race- and ethnicity-based differences in being diagnosed with a concussion or minor head trauma in an ED.¹⁹

Although multiple factors may contribute to those differences, including (but not limited to) systemic racial bias, they report significantly higher odds of non-Hispanic Black children sustaining their head injury due to assault rather than sport. They and others note the disproportionate exposure to violence experienced by Black adolescents due primarily to systemic racism.^8,19 Although not seen in this study, their findings nevertheless highlight the need for providers to be cognizant of this exposure and its effect on medical decision making; financial burdens; and postdischarge needs for rehabilitation, durable medical equipment (DME), and other chronic needs.

This study has the following limitations. Data were collected from a single site, and the sample size is relatively small despite the length of the data collection period. There is also a lack of racial and ethnic diversity, although the sample is similar to the general midwest population where the study was performed. Another limitation was that WeeFIM data were unavailable for those who either did not enter inpatient rehabilitation, or who entered it at another site. There was a lack of a uniform clinical outcome variable similar to WeeFIM data but present for all persons with TBI. Nevertheless, important conclusions can still be made.

We propose criteria for referring children and adolescents sustaining moderate or severe TBIs to PC for additional support. Future steps include seeking broader consensus and revision of the proposed criteria through a Delphi or similar process, and prospective testing of the criteria to demonstrate improved outcomes for children and adolescents sustaining moderate and severe TBIs.

Conclusions

PC services are a finite resource and should be available to and focused on those with greatest need. Empirically based guidance on when to consult specialist PC, or consider consultation, may maximize the likelihood that those in need will receive PC services.

Clinical Palliative Care Program Description Program Structure

This palliative care center is a division of the department of pediatrics in an independent 467-bed pediatric quaternary referral system. Payment sources are philanthropy/grants, hospital support, and revenue from fee-for-service care provision with a small allocation from value-based arrangements.

Team staffing

The palliative care team comprises the following disciplines: physician (2.95 full-time equivalent [FTE]), fellow physician (2 FTE), advanced practice provider (2 FTE), nurse case manager (2 FTE), social worker (2.5 FTE), bereavement coordinator (1 FTE), child life specialist (0.4 FTE), dietitian (0.5 FTE), chaplain (2.5 FTE), occupational therapy (0.02 FTE), physical therapy (0.02 FTE), art therapist (2 FTE), music therapist (2 FTE), clinical research coordinator (1.6 FTE), psychologist (0.8 FTE), administrative and operations staff (5.5 FTE), and research scientist (1 FTE). The four dedicated palliative care physicians, two nurse case managers, and one advanced nurse practitioner have specialist palliative care certifications.

Program availability

Palliative care is provided in hospital, outpatient ambulatory clinic, and home (including facilities where patients reside); staff are available 24/7. Referral criteria individually established and agreed-upon with a number of divisions (e.g., automatic pediatric intensive critical care unit consult on admission >7 days; neuromuscular disorders beginning at age 12 years if not needed before; burn center (end-of-life imminent or anticipated in 7 days, goals of care unclear, conflictual, or unarticulated; specialist bereavement care indicated, loss of functioning, on ventilator >7 days, SCORTEN ≥4; modified Baux score ≥100); MFM/fetal treatment center and NICU for agreed-upon disorders; oncology for all new diagnoses requiring chemotherapy or radiation; bone marrow transplant patients on admission if not known prior; hematology: sickle cell patients for parenteral pain management; and others).

Patient volume and interactions

Palliative care averaged 3028 visits per year during this study period, with an average daily census of 35 inpatients (seen on average three times per week) and 1500 active patients overall, who had an average length of stay in palliative care of 1432 days.

Footnotes

Acknowledgments

The authors gratefully thank the patients together with their families and the health care staff who provided compassionate care for traumatic brain injury; Ramy El-Assal and Rachel Jenkins are also thanked for their invaluable support and contributions.

Authors' Contributions

R.V. contributed to investigation, validation, data curation, writing—original draft, and writing—review and editing. D.H.G. was involved in conceptualization, methodology, validation, writing—review and editing, and supervision. M.Br. carried out methodology, formal analysis, writing—review and editing, and visualization. S.D. was in charge of conceptualization, methodology, and writing—review and editing. G.R. took charge of validation, investigation, data curation, and writing—review and editing. . was in charge of conceptualization, methodology, writing—review and editing. S.F. carried out conceptualization, methodology, resources, writing—review and editing, and project administration.

Funding Information

This study received partial internal funding from the Haslinger Family Pediatric Palliative Care Center and the Rebecca D. Considine Research Institute, Akron Children's Hospital, Akron, OH.

Author Disclosure Statement

No competing financial interests exist.

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