A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care

Abstract

Purpose:

Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults with cancer, given the intensity of oncology care. Yet, little is known about their needs. We compared young adults with and without cancer in concurrent hospice care.

Methods:

Retrospective comparative design used data from 2011 to 2013 U.S. Medicaid data files. Decedents were included if they were 20 years of age, enrolled in Medicaid hospice care, and used nonhospice medical services on the same day as hospice care based on their Medicaid claims activity dates.

Results:

Among 226 decedents, 21% had cancer; more than half were female (60.6%), Caucasian (53.5%), non-Hispanic (77.4%), urban dwelling (58%), and had mental/behavioral disorder (53%). Young adults with cancer were more often non-Caucasian (68.7% vs. 40.4%), technology dependent (47.9% vs. 24.2%), had comorbidities (83.3% vs. 30.3%), and lived in rural (58.3% vs. 37.6%), southern (41.7% vs. 20.8%) areas versus peers without cancer. Those with cancer had significantly fewer live discharges from hospice (5.7 vs. 17.3) and sought treatment for symptoms more often from nonhospice providers (35.4% vs. 14.0%).

Conclusions:

Young adults in concurrent hospice experience medical complexity, even at end-of-life. Understanding care accessed at 20 years helps providers guide young adults and families considering options in adult-focused care. Clinical and demographic differences among those with and without cancer in concurrent care highlight needs for research exploring racial and geographic equity.

Introduction

Each year in the United States over 3000 young adults die with health-related causes.¹ It is common for these young adults under 21 years to have serious advanced illnesses such as cancer.² In addition, they often have marked functional limitations and rely on technology and assistive devices to participate in activities of daily living, such as tracheostomies.³ Their end-of-life care includes significant symptom management and complicated care plans that extend across numerous clinical specialties.⁴ For the families and caregivers of young adults at end-of-life, there can be substantial caregiving burden.^5–7

Although traditional hospice services offer a family-centered model of care that can assist with symptom management, psychosocial care, respite, and bereavement support for the young adult with cancer and family at end-of-life, more recent care delivery models such as concurrent hospice care offer additional support. Traditional hospice care requires a cancer patient to have a 6 month-to-live prognosis and discontinuation of all care related to the advanced serious illness. Conversely, concurrent hospice care allows young adults the option to continue curative care while enrolled in hospice. The primary goal of concurrent hospice care is enabling children and young adults with life expectancies of 6 months or less to receive curative care focused on comfort and quality of life.⁸ Curative care is often delivered by a nonhospice provider such as a pediatrician or pediatric specialist and can include the continuation of chemotherapy to antibiotics for infections.

All state Medicaid and Children's Health Insurance Program (CHIP) plans are required to provide for both curative care and hospice services for children, adolescents, and young adults under the age of 21 under the Patient Protection and Affordable Care Act (ACA), Section 2302. However, concurrent hospice care ceases at age 21 for those in Medicaid/CHIP, and it is currently not available for adult hospice patients. Thus, 20-year olds with cancer in concurrent hospice care represent a unique group of hospice patients, whose transition to adult care will require them to either enroll in traditional adult hospice care or disenroll from hospice and continue their medical treatments.

Still, what is known about young adults with cancer in concurrent hospice care is limited. Information on concurrent hospice care has focused on implementation,^9–12 theory,^13,14 and history.¹⁵ Our current work has described children in general who have used concurrent care and found that they have complex health care needs and service requirements.¹⁶ However, no literature was identified that examined concurrent hospice care patients at this important age. There is a critical need to understand the 20-year-old patients in concurrent hospice care before experiencing a significant transition in their end-of-life care. Therefore, the purpose of the study was to compare young adults with and without a cancer diagnosis in concurrent hospice care.

Model of Pediatric Concurrent Hospice Care

Consistent with prior relevant pediatric hospice research, our study focused on the following characteristics of pediatric concurrent hospice care: demographic, community, hospice, and clinical characteristics (Fig. 1).^8,17 Demographic characteristics were included in our model because studies have shown the influence of age and health on hospice use.^18,19 We also know that community characteristics may affect the receipt of hospice care. Children, adolescents, and young adults who reside in rural areas or areas with significant poverty might not have access to hospice care.^7,20 Our previous work has also demonstrated the importance of hospice characteristics on the provision of hospice care for children and their families.²¹ Finally, the clinical characteristics of hospice care, including live discharges and hospice transitions, are critical indicators of quality concurrent hospice care for children.^19,22

FIG. 1.

Model of pediatric concurrent hospice care characteristics.

Methods

Design and sample

Data from the 2011 to 2013 U.S. Medicaid data files were used in this retrospective comparative design. A total of 21,383 children, adolescents, and young adults enrolled in Medicaid hospice care from January 1, 2011 to December 31, 2013 were our sampling frame. Decedents were included if they were 20 years of age and used nonhospice medical services on the same day as hospice care based on their Medicaid claims activity dates.^23,24 Observations were excluded if date of birth or death was missing or participants had no service level Medicaid claims.

We chose 2011 because this was the first full year of concurrent hospice care that was implemented within state Medicaid programs and 2013 because this was the most current data available from the Centers of Medicare and Medicaid Services (CMS). We limited our sample to participants who were 20 years old because concurrent hospice care under Medicaid regulations ceases at age 21. This age is just before their transition to adult health care (adult hospice care or adult treatment services), which currently does not include concurrent hospice care. The final sample was 228 young adults who received concurrent hospice care. This study was reviewed and approved by the University of Tennessee, Knoxville Institutional Review Board.

Data sources

Multiple data sources were used for the study. CMS collects and prepares the Medicaid Analytical Extract (MAX) files, which are person-level, administrative claims files from data submitted electronically by all 50 states and the District of Columbia.²⁵ Four Medicaid files were used: personal summary (enrollment and demographic information), other therapy (diagnosis and procedure information), inpatient (hospitalization data on service dates and procedure codes), and prescription drug (information on prescription fill dates and national drug codes). We used Medicaid claims data because it is one of the only data sources that includes nationwide hospice information on people under 21 years. We also used the publicly available 2010 U.S. Census files, which provided information on community characteristics. Finally, the CMS Hospice Provider of Services files and CMS Hospice Utilization and Payment files were used for information on hospice provider characteristics.

Measures

Demographic characteristics

Gender was dichotomized as female or male. The young adult's race was operationalized as Caucasian or non-Caucasian, while ethnicity was Hispanic versus non-Hispanic. Comorbidities were defined as two or more complex chronic conditions.²⁶ Mental/behavioral disorder was whether a young adult had a mental or behavioral diagnosis.²⁷ Requiring medical technology or devices was our definition of technology dependence.

Community characteristics

Using the Health Resources & Services Administration definition of rurality, we defined rural/urban.²⁸ The four census regions of Midwest, Northeast, South, and West were the regional categories. The household income was the percentage of county residents with a median household income less than or more than $50,000 annually.

Hospice characteristics

We dichotomized the size of a hospice as ≤50 employees or >50 employees. Our measure of hospice ownership was for-profit versus nonprofit & government. The hospice's organizational age was measured as the number of years the hospice was a licensed hospice provider. Pediatric program was whether or not the hospice had dedicated patient services for children and adolescents.

Clinical characteristics

The number of times a young adult discontinued hospice care for a day or more and then reenrolled in hospice care during concurrent hospice care was our measure of hospice live discharge. Hospice transition to the emergency room was defined as whether the emergency room was used while enrolled in hospice care. We calculated length of stay in concurrent hospice care as the total number of days a young adult was enrolled in hospice care. Nonhospice symptom management was operationalized as receiving care for symptoms from a nonhospice provider during the hospice enrollment.

Data analysis

The primary aim of the study was to compare the young adults with and without cancer in concurrent hospice care. We conducted a secondary analysis of the data for this study, and descriptive statistics was calculated on the demographic, community, hospice, and clinical characteristics of the young adults. The young adults were stratified by diagnosis (cancer, noncancer) for the comparison analysis.²⁶ The Pearson χ² test for differences in proportions and student t-test for differences in means were used to provide comparisons between those with and without a cancer diagnosis. Our results are presented in the form of univariate distributions and means. Because of small sample size in some categories, results with less than 10% or 10 observations were not reported, as per our Medicaid Data Use Agreement. Analyses were conducted using Stata version 15.²⁹

Results

The demographic characteristics of the 226 young adults are summarized in Table 1. Twenty-one percent of the 20-year olds had a cancer diagnosis, while 79% did not have cancer. Among the overall sample, more than half of the 20-year-old concurrent care patients were female (60.6%), Caucasian (53.5%), and non-Hispanic (77.4%). Forty-two percent of young adults had comorbidities, while more than half (53.6%) had a mental/behavioral disorder. Approximately a third of young adults were technology dependent. There were significant demographic differences between those with and without a cancer diagnosis. Young adults with cancer were more often non-Caucasian (68.7% vs. 40.4%), had comorbidities (83.3% vs. 30.3%), and were technology dependent (47.9% vs. 24.2%). No other demographics were different between the groups.

Table 1.

Demographic Characteristics (N = 226)

Variables	Total	Cancer diagnosis		p
Variables	Total	Cancer n = 48	Noncancer n = 178	p
Gender				0.090
Female	60.6%	50.0%	63.5%
Male	39.4%	50.0%	36.5%
Race				0.001
Caucasian	53.5%	31.3%	59.6%
Non-Caucasian	46.5%	68.7%	40.4%
Ethnicity				0.747
Hispanic	22.6%	20.8%	23.0%
Non-Hispanic	77.4%	79.2%	77.0%
Comorbidities	42.6%	83.3%	30.3%	0.001
Mental/behavioral disorders	53.1%	64.6%	50.0%	0.073
Technology dependence	29.2%	47.9%	24.2%	0.001

Bold font indicates statistical significance.

Table 2 summarizes the community environment. Most of the young adults in concurrent hospice care (58.0%) resided in an urban area. These patients commonly resided in the Northeast (38.2%) and least commonly in the Midwest (10.8%). More than a third of young adults in the sample resided in communities with a median household income less than $50,000/year. Significant differences between 20-year olds with and without cancer were found in community characteristics. Those with cancer were more likely to live in rural (58.3% vs. 37.6%) and southern (41.7% vs. 20.8%) areas compared to their peers without cancer.

Table 2.

Community Characteristics (N = 226)

Variables	Total	Cancer diagnosis		p
Variables	Total	Cancer n = 48	Noncancer n = 178	p
Rural/urban				0.010
Urban	58.0%	41.7%	62.4%
Rural	42.0%	58.3%	37.6%
Region				0.001
Midwest	10.8%	14.6%	12.9%
Northeast	38.2%	NA	58.4%
South	19.8%	41.7%	20.8%
West	31.2%	37.5%	NA
Household income <$50,000/year	38.5%	50.0%	35.4%	0.066

Bold font indicates statistical significance.

NA, not able to report due to Data Use Agreement.

The variables that defined characteristics of hospices that provided concurrent hospice care to 20-year-old patients are displayed in Table 3. Most hospices (64.6%) had less than 50 employees and were for-profit (58.9%). The average age of operation as a hospice was almost 20 years. A quarter of hospices had a dedicated pediatric care program. There were no hospice characteristics that were significantly different between cancer and noncancer patients.

Table 3.

Hospice Characteristics (N = 226)

Variables	Total	Cancer diagnosis		p
Variables	Total	Cancer n = 48	Noncancer n = 178	p
Size				0.174
<50 employees	64.6%	56.3%	66.9%
>50 employees	35.4%	45.7%	33.1%
Ownership				0.462
For profit	58.9%	54.2%	60.1%
Nonprofit/government	41.1%	45.8%	39.9%
Organizational age, M (SD)	19.8 (9.4)	21.3 (7.5)	19.5 (9.8)	0.173
Pediatric program	23.9%	33.3%	21.4%	0.087

M, mean; SD, standard deviation.

The clinical characteristics among the sample are noted in Table 4. Those aged 20 years averaged 15 live discharges from hospice. Nineteen percent of young adults transitioned out of hospice to use the emergency room while in concurrent hospice care. The average length of stay for 20-year olds in concurrent care was 73 days. Less than a quarter of young adults sought symptom management from a nonhospice provider. Patient with cancer differed on several clinical characteristics from those without cancer. The patient with cancer had significantly fewer live discharges from hospice care (5.7 vs. 17.3) compared to those without cancer. They also sought treatment for symptoms more often from nonhospice providers (35.4% vs. 14.0%). No other clinical characteristics were significantly different between those with and without cancer in the sample.

Table 4.

Clinical Characteristics (N = 226)

Variables	Total	Cancer diagnosis		p
Variables	Total	Cancer n = 48	Noncancer n = 178	p
Hospice live discharge	15.3 (11.9)	5.7 (11.5)	17.3 (12.0)	0.001
Hospice transition—ER	19.0%	22.9%	18.0%	0.444
Hospice length of stay	72.6 (129.9)	86.3 (100.5)	69.7 (136.4)	0.352
Nonhospice symptom management	18.6%	35.4%	14.0%	0.001

Bold font indicates statistical significance.

ER, emergency room.

Discussion

The goal of this study was to examine the characteristics of young adults in concurrent hospice care and compare those with and without cancer in a national study of Medicaid beneficiaries at end-of-life. The project improves on past efforts to understand patients in pediatric concurrent hospice care by focusing on 20-year olds, which is before their transition out of pediatric concurrent hospice care and into adult health care (adult hospice or adult treatment). The results of the study shed important new evidence on this very vulnerable and understudied population.

Among the 20-year-old concurrent hospice care patients in this study, many experienced serious health issues at end-of-life. We identified health complications for these young adults, which included comorbidities, mental and behavioral health problems, and technology dependency. These patients in concurrent hospice care were very medically complex, even at end-of-life. Compared to the pediatric concurrent care population overall, our study sample had higher rates of comorbidities and mental/behavioral disorders.¹⁷ Prior work has also demonstrated similar findings among adolescents and young adults in standard hospice care.^7,19,30 Although we expect medical complexity at end-of-life among these young adults, the percentage of those with mental/behavioral health problems was relatively high at 53%, and even higher for those with a cancer diagnosis (65%). Our recent work found that approximately a quarter of children admitted to any type of hospice care with a mental/behavioral disorder were adolescents and young adults, and their most common diagnosis was affective disorders, behavioral disorders, and depression.³¹ It is possible that the sample in this study had high rates of mental/behavioral disorders because many disorders do not manifest until a child is older (e.g., affective disorders). Future research might examine mental/behavioral health needs of these young adults specifically.

We found that young adults with cancer had a unique profile compared to those without. The 20-year olds with cancer in concurrent hospice care were predominately non-white and resided in the rural, South. This finding was consistent with prior research examining the spatial distribution of pediatric cancer decedents in Tennessee.³² This study investigated geographic variation by race in mortality among children and adolescents diagnosed with cancer in Tennessee using data from the 2004 to 2011 Tennessee Cancer Registry. The findings revealed that African American children and adolescents in Tennessee were more likely than their counterparts of other races to reside in rural areas with close proximity to mortality clusters of children and adolescents with cancer. Although the data from our current study did not allow us to examine the experience of non-Caucasian young adults and their families in receiving treatment for their health in rural areas, additional research exploring issues of racial and geographic equity is warranted.

In addition, the study showed that clinical characteristics of young adults with and without cancer varied while in concurrent hospice care. Patients with cancer had significantly fewer live discharges from hospice and were more likely to receive symptom management from a nonhospice provider. Young adults with cancer averaged 6 live discharges from hospice, compared to 17 live discharges for noncancer patients and double the percent of nonhospice symptom management (35.4% vs. 14.0%). One possible explanation for these clinical findings might reflect the clinical relationships young adults with cancer have with their treatment team. Because of the intensity and frequency of cancer treatment such as chemotherapy or radiation, young adults with cancer may form a relationship with their oncologist and the oncology team.³³ They might seek treatment for their symptoms while they are receiving cancer treatments rather than wait for a hospice visit during concurrent care. It would be interesting to explore who is providing nonhospice symptom management and whether that care is being coordinated with the hospice provider. Important questions remain to be examined.

Our study has a few notable limitations. First, the study sample consisted of young adults enrolled in Medicaid, and the results cannot be generalized to young adults covered under other insurances. However, the nationally representative data set of young adults lends itself to conclusions about the use of concurrent care by terminally ill young adults within the United States. Second, the data in this study covered only include 2011 to 2013. However, these were the most recent data available. Finally, the descriptive design of this study precluded drawing conclusions about the effects of a cancer diagnosis on concurrent care, but it provides an in-depth baseline of information that can be used in future studies.

Despite the limitations, the study has important implications for oncology clinicians who help these young adult patients and their families prepare for the transition to adult health care. Our findings suggest that young adults might need comprehensive coordinated care that acknowledges their pediatric-based health conditions regardless of whether they transition to adult hospice or seek adult treatment services only. Level of care needed by the young adult and supported by their caregivers might motivate decisions about transitioning out of concurrent care to either hospice or treatments. The hospice and nonhospice care teams, along with the insurance provider, should conduct these conversations about evolving goals of care before the aging out of pediatric concurrent hospice care.

Our results are evidence of the complex care needs of 20-year-old young adults, a group at the precipice of transition to adult hospice or adult curative care. The complexity of this care reminds us of the multiple risks and vulnerabilities adolescents and young adults (AYA) and their family caregivers face in the transition to adult-focused care. These risks are so great that transition is recognized as a global health and social issue.³⁴ Key factors that challenge the transition process include: a disjointed approach by providers and organizations; AYA and family difficulty in adjusting to adult-focused health care; the end of long-time relationships with pediatric providers; and the loss of services.^35,36 Kerr et al. report that inadequate planning by the pediatric and adult providers and a lack of preparation of the AYA and family caregiver are important barriers in transition.³⁴ Our findings begin to address this issue by providing a description of the care and service needs of young adults (YA) nearing transition. Such data can shape and inform the needed support before transition from the pediatric providers and following transition from the adult providers.³⁷

In summary, this study examined the characteristics of a unique population of concurrent hospice care recipients in a national cohort of young adults with and without cancer. A comprehensive set of measures was created from 2011 to 2013 Medicaid claims files. We sought to understand the demographic, community, hospice, and clinical characteristics of 20-year olds and compare characteristics between those with and without cancer. The findings revealed significant difference in demographics, community, and clinical characteristics between cancer and noncancer young adults, which provides critical insight into their upcoming transition from pediatric concurrent hospice care to adult health care (adult hospice or adult treatment). Understanding the level and intensity of care required at 20 years allows pediatric providers to guide AYA and families as they consider the best path of adult-focused care. Such guidance is consistent with the steps of successful transitions in pediatric to adult focused health care outlined by organizations that support transitions in serious illness.³⁷

Footnotes

Acknowledgment

Special thanks to Jamie Butler for her assistance in preparing the article.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award No. R01NR017848.

References

Murphy

, Mathews

, Martin

, et al. Annual Summary of Vital Statistics: 2013–2014. Pediatrics. 2017; 139(6):e20163239.

Lindley

, Cohrs

, Keim-Malpass

, Leslie

. Children enrolled in hospice care under commercial insurance: a comparison of different age groups. Am J Hosp Palliat Care. 2019; 36(2):123–9.

Lindley

, Mack

, Bruce

. Clusters of multiple complex chronic conditions: a latent class analysis of children at end of life. J Pain Symptom Manage. 2016; 51(5):868–74.

Pritchard

, Cuvelier

, Harlos

, Barr

. Palliative care in adolescents and young adults with cancer. Cancer. 2011; 117(S10):2323–8.

Mooney-Doyle

, Lindley

. The association between poverty and family financial challenges of caring for medically complex children. Nurs Econ. 2019; 37(4):198–208.

Mooney-Doyle

, Lindley

. Family and child characteristics associated with caregiver challenges for medically complex children. Fam Community Health. 2020; 43(1):74–81.

Roeland

, Lindley

, Gilbertson-White

, et al. End-of-life care among adolescent and young adult patients with cancer living in poverty. Cancer. 2020; 126(4):886–93.

Lindley

LC.

Health care reform and concurrent curative care for terminally ill children: a policy analysis. J Hosp Palliat Nurs. 2011; 13(2):81.

Lindley

, Keim-Malpass

, Svynarenko

, et al. Pediatric concurrent hospice care: a scoping review and directions for future nursing research. J Hosp Palliat Nurs. 2020; 22(3):238–45.

10.

Lotstein

, Lindley

. Improving home hospice and palliative care policies. Pediatrics. 2019; 144(2):e20183287.

11.

Lindley

, Edwards

, Bruce

. Factors influencing the implementation of health care reform: an examination of the concurrent care for children provision. Am J Hosp Palliat Care. 2014; 31(5):527–33.

12.

Miller

, LaRagione

, Kang

, Feudtner

. Concurrent care for the medically complex child: lessons of implementation. J Palliat Med. 2012; 15(11):1281–3.

13.

Mooney-Doyle

, Keim-Malpass

, Lindley

. The ethics of concurrent care for children: a social justice perspective. Nurs Ethics. 2019; 26(5):1518–27.

14.

Walsh

RA.

A matter of life, death, and children: the Patient Protection and Affordable Care Act Section 2302 and a shifting legal paradigm. South Calif Law Rev. 2012; 86:1119.

15.

Keim-Malpass

, Hart

, Miller

. Coverage of palliative and hospice care for pediatric patients with a life-limiting illness: a policy brief. J Pediatr Health Care. 2013; 27(6):511.

16.

Lindley

, Cozad

, Svynarenko

, et al. A national profile of children receiving pediatric concurrent hospice care, 2011 to 2013. J Hosp Palliat Nurs. 2021; 23:Epub.

17.

Lindley

, Cozad

, Svynarenko

, et al. A national profile of children receiving pediatric concurrent hospice care, 2011 to 2013. J Hosp Palliat Nurs. 2021; 22(3):238–45.

18.

Lindley

, Newnam

. Hospice use for infants with life-threatening health conditions, 2007 to 2010. J Pediatr Health Care. 2017; 31(1):96–103.

19.

Keim-Malpass

, Lindley

. End-of-life transitions and hospice utilization for adolescents: does having a usual source of care matter?. J Hosp Palliat Nurs. 2017; 19(4):376.

20.

Lindley

, Edwards

. Geographic variation in California pediatric hospice care for children and adolescents: 2007–2010. Am J Hosp Palliat Care. 2018; 35(1):15–20.

21.

Lindley

, Mark

, Lee

, et al. Factors associated with the provision of pediatric hospice care. J Pain Symptom Manage. 2013; 45(4):701–11.

22.

Lindley

, Keim-Malpass

. Quality of paediatric hospice care for children with and without multiple complex chronic conditions. Int J Palliat Nurs. 2017; 23(5):230–7.

23.

Mor

, Joyce

, Coté

, et al. The rise of concurrent care for veterans with advanced cancer at the end of life. Cancer. 2016; 122(5):782–90.

24.

Mor

, Wagner

, Levy

, et al. Association of expanded VA hospice care with aggressive care and cost for veterans with advanced lung cancer. JAMA Oncol. 2019; 5(6):810–6.

25.

Ruttner

, Borck

, Nysenbaum

, Williams

Guide to MAX data. Medicaid Policy Brief #21. Mathematica Policy Research. Washington, DC; 2015. 1–10.

26.

Feudtner

, Feinstein

, Zhong

, et al. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr. 2014; 14(1):199.

27.

Garfield

, Brown

, Allaire

, et al. Psychotropic drug use among preschool children in the Medicaid program from 36 states. Am J Public Health. 2015; 105(3):524–9.

28.

Resources and Service Administration Health. Defining Rural Population [Internet]. 2020 [cited November 25, 2020]. From https://www.hrsa.gov/rural-health/about-us/definition/index.html

29.

StataCorp

LLC.

Stata statistical software: Release 15 (2017). College Station, TX: StataCorp LP; 2017.

30.

Keim-Malpass

, Cohrs

, Lindley

, Leslie

. An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life. Adolesc Health Med Ther. 2018; 9:117.

31.

Lindley

, Svynarenko

, Beebe

. Mental health and developmental disabilities in US children admitted to hospice care: a comparison of age groups. Int J Palliat Nurs. 2021; epub.

32.

Lindley

, Oyana

. Geographic variation in mortality among children and adolescents diagnosed with cancer in Tennessee: does race matter?. J Pediatr Oncol Nurs. 2016; 33(2):129–36.

33.

Zimmermann

, Bergstraesser

, Engberg

, et al. When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care. BMC Palliat Care. 2016; 15(1):30.

34.

Kerr

, Widger

, Cullen-Dean

, et al. Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison. BMC Palliat Care. 2020; 19(1):1–11.

35.

Joly

Transition to adulthood for young people with medical complexity: an integrative literature review. J Pediatr Nurs. 2015; 30(5):e91–103.

36.

Hepburn

, Cohen

, Bhawra

, et al. Health system strategies supporting transition to adult care. Arch Dis Child. 2015; 100(6):559–64.

37.

Kelly

. Together for short lives. Standards framework for children's palliative care (3rd edition). 2015. Accessed October 16, 2020 from: https://mpaeds.my/wp-content/uploads/2018/03/Standards-framework-for-children%E2%80%99s.pdf