Understanding Adult Hospices Caring for Children in California, 2018-2021
child; adult; article; female; human; male; retrospective study; economics; care behavior; nurse; hospice care; medicaid; California; home health agency; latitude; longitude; urban population
In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.
Davis HA; Weaver MS; Torkildson C; Lindley LC
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091231204941" target="_blank" rel="noreferrer noopener">10.1177/10499091231204941</a>
Incremental cost analysis of pediatric hospice care in rural and urban Appalachia
Humans; Child; United States; Hospice Care; Patient Protection and Affordable Care Act; Costs and Cost Analysis; Hospices; Aged; Hospice Care; Medicare; Hospices; Appalachian Region
Purpose: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act) versus standard hospice care. Methods: Data on 1,788 pediatric hospice patients, from the Appalachian region, collected between 2011 and 2013, were obtained from the Centers for Medicare and Medicaid Services. Incremental per-patient-per-month (PPM) costs of enrollment in concurrent versus standard hospice care were analyzed using multilevel generalized linear models. Increments for analysis were hospice length of stay (LOS). Results: For rural children enrolled in concurrent hospice care, the mean Medicaid cost of hospice care was $3,954 PPPM (95% CI: $3,223-$4,684) versus $1,933 PPPM (95% CI: $1,357-$2,509) for urban. For rural children enrolled in standard hospice care, the mean Medicaid cost was $2,889 PPPM (95% CI: $2,639-$3,139) versus $1,122 PPPM (95% CI: $980-$1,264) for urban. There were no statistically significant differences in Medicaid costs for LOS of 1 day. However, for LOS between 2 and 14 days, concurrent enrollment decreased total costs for urban children (IC = $-236.9 PPPM, 95% CI: $-421-$-53). For LOS of 15 days or more, concurrent care had higher costs compared to standard care, for both rural (IC = $1,399 PPPM, 95% CI: $92-$2,706) and urban children (IC = $1,867 PPPM, 95% CI: $1,172-$2,363). Conclusions: The findings revealed that Medicaid costs for concurrent hospice care were highest among children in rural Appalachia. Future research on factors of high costs of rural care is needed.
Svynarenko R; Cozad MJ; Keim-Malpass J; Lindley LC
The Journal of Rural Health
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jrh.12713" target="_blank" rel="noreferrer noopener">10.1111/jrh.12713</a>
A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis
Hospice Care; Hospices; Information Systems; pediatric hospice care; concurrent hospice care; medicaid; spatial analysis; ArcGIS; rural hospice care
Svynarenko R; Huang G; Keim-Malpass J; Cozad MJ; Qualls KA; Stone Sharp W; Kirkland DA; Lindley LC
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://journals.sagepub.com/doi/10.1177/10499091231173415">10.1177/10499091231173415</a>
Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study
Hospice Care; Terminal Care; Child; Death; Humans; Palliative Care; Patient Protection and Affordable Care Act; United States
Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has been limited. This article provides a brief overview of IVA and its assumptions. It illustrates the use of IVA by investigating the comparative effectiveness of concurrent versus standard hospice care for reducing 1-day hospice enrollments. Concurrent hospice care is a relatively recent type of care enabled by the Affordable Care Act in 2010 for children enrolled in the Medicaid program and allows for receiving life-prolonging medical treatment concurrently with hospice care. The IVA was conducted using observational data from 18,152 pediatric patients enrolled in hospice between 2011 and 2013. The results indicated that enrollment in concurrent hospice care reduced 1-day enrollment by 19.3%.
Svynarenko R; Cozad MJ; Mack JW; Keim-Malpass J; Hinds PS; Lindley LC
Western Journal of Nursing Research
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/01939459231163441" target="_blank" rel="noreferrer noopener">10.1177/01939459231163441</a>
Evaluating the cost-effectiveness of pediatric concurrent versus standard hospice care
Cost-Benefit Analysis; Hospice Care; Hospices
Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed that concurrent care was more effective but at a higher cost.
Lindley LC; Cozad MJ; Svynarenko R; Keim-Malpass J; Mack JW; Hinds PS
Nursing Economic$
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review
geographic information system; hospice care; palliative therapy; article; child; clinical practice; data visualization; Geographic Information Systems; human; Information Systems; software; systematic review
Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been used in pediatric end-of-life research over the last 20 years. Scoping review method was used to summarize existing evidence and inform research methods and clinical practice was used. The Preferred Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA) was utilized. The search resulted in a final set of 17 articles. Most studies created maps for data visualization and used ArcGIS as the primary software for analysis. The scoping review revealed that GIS methodology has been limited to mapping, but that there is a significant opportunity to expand the use of this methodology for pediatric end-of-life care research.
Qualls KA; Svynarenko R; Cozad MJ; Keim-Malpass J; Huang G; Lindley LC
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091231165276" target="_blank" rel="noreferrer noopener">10.1177/10499091231165276</a>
From Hospital to Home: Referrals to Pediatric Hospice and Home-Based Palliative Care
Palliative Care; Hospice; Pediatrics; Hospices; Referral and Consultation; Home-Based Palliative Care
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n=34, 58.6%); descendants were more likely to have cancer (p=.002) and less likely to have a neurologic (p=.021) diagnosis. CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.
Lotstein D; Klein MJ; Lindley LC; Wolfe J
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.009</a>
A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care
Oncology
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.
Mooney-Doyle K; Keim-Malpass J; Svynarenko R; Lindley LC
Journal of Adolescent and Young Adult Oncology
2022
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<a href="http://doi.org/10.1089/jayao.2021.0004" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0004</a>
Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives
Oncology
BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. METHOD(S): We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. RESULT(S): Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. CONCLUSION(S): Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.
Mack JW; Currie ER; Martello V; Gittzus J; Isack A; Fisher L; Lindley LC; Gilbertson-White S; Roeland E; Bakitas M
Journal of the National Comprehensive Cancer Network
2021
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<a href="http://doi.org/10.6004/jnccn.2020.7645" target="_blank" rel="noreferrer noopener">10.6004/jnccn.2020.7645</a>
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
Oncology
BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. DESIGN: Cross-sectional observational study. SETTING/SUBJECTS: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. MEASUREMENTS: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. RESULT(S): Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. CONCLUSION(S): Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.
Currie ER; Johnston EE; Bakitas M; Roeland E; Lindley LC; Gilbertson-White S; Mack J
Journal of Palliative Care
2021
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<a href="http://doi.org/10.1177/08258597211001991" target="_blank" rel="noreferrer noopener">10.1177/08258597211001991</a>
Differences in Characteristics of Children with Cancer Who Receive Standard versus Concurrent Hospice Care
pediatric oncology; Medicaid; pediatric hospice care; concurrent hospice care
BACKGROUND: The provision of Section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) allowed pediatric patients who are enrolled in Medicaid to receive hospice care concurrently with curative treatment (i.e., concurrent hospice care). Because it is a relatively new model of care and very little is known about the characteristics of children with cancer who receive it, the purpose of the current study was to compare demographic, health, and community characteristics of children who received standard hospice care versus concurrent hospice care. PROCEDURE: This study was a retrospective, comparison study with national Medicaid files provided by the Center for Medicare and Medicaid Services (CMS). The sample included 1685 pediatric patients under the age of 20 who were diagnosed with cancer, were enrolled in hospice between 2011 and 2013, and received standard hospice care (n = 1008) or concurrent hospice care (n = 655). RESULTS: Children of non-Hispanic White race with multiple complex chronic conditions, mental/behavioral health problems technology dependence, and brain and orbital tumors were more likely to be enrolled in concurrent care than in standard hospice care. The proportion of children enrolled in concurrent care versus standard hospice care was larger in rural areas, low-income communities, and in the Southern states. CONCLUSIONS: The enhanced uptake of concurrent care by traditionally underserved populations is promising. Concurrent hospice care, which allows for continued medical treatment and hospice care, could enhance access to hospice within these populations by offering a more blended model of care.
Svynarenko R; Mack JW; Lindley LC
Pediatric Blood and Cancer
2021
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<a href="http://doi.org/10.1002/pbc.29106" target="_blank" rel="noreferrer noopener">10.1002/pbc.29106</a>
Conceptualizing the Value of Pediatric Concurrent Hospice Care
Hospice Care; Hospice; Child; Delivery of Health Care; Hospice Care; Hospice; Human
Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.
Sharp WS; Svynarenko R; Fornehed MLC; Cozad MJ; Keim-Malpass J; Mack JW; Hinds PS; Mooney-Doyle K; Mendola A; Lindley LC
Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000918" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000918</a>
Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Result(s): Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusion(s): Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Sisk BA; Keenan MA; Schulz GL; Bakitas M; Currie ER; Gilbertson-White S; Lindley LC; Roeland EJ; Mack JW
Journal of adolescent and young adult oncology
2022
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<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0154</a>
Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care
BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE(S): The aim of this study was to examine the patterns of nonhospice healthcare services among children with cancer in concurrent hospice care. METHOD(S): This study was a retrospective cohort analysis of 2011-2013 Medicaid claims data from 862 pediatric cancer patients. Data were analyzed using descriptive statistics and latent class analysis (LCA). RESULT(S): Children used 120 388 healthcare services, including inpatient and outpatient hospital services, laboratories and x-rays, durable medical equipment, medications, and others. These services clustered into 2 classes with moderate-intensity (57.49%) and high-intensity (42.50%) healthcare service use. Children in the high-intensity cluster were more likely to reside in the South with comorbidities, mental/behavioral health conditions, and technology dependence and were less likely to have solid tumors, compared with the moderate-intensity group. CONCLUSION(S): Nonhospice healthcare services clustered together in 2 distinct classes, providing critical insight into the complexity of the healthcare use among children with cancer in concurrent hospice care. IMPLICATIONS FOR PRACTICE: Understanding that pediatric patients in concurrent care may have different healthcare service patterns may assist oncology nurses caring for children with advanced cancer. These findings also have policy implications. Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.
Svynarenko R; Lindley LC; Mooney-Doyle K; Mendola A; Naumann WC; Mack JW
Cancer Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NCC.0000000000001067" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000001067</a>
Continued Challenges Accessing Pediatric Hospice Services
Child; Humans; Hospices; Hospice Care; Palliative Care
Aglio T; Autrey AK; Shostrom VK; Weaver MS; Kaye EC; Lindley LC
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.08.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.08.009</a>
Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care
Comfort Care; Social Determinants of Health
The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants of comfort builds on the well-accepted concept of social determinants of health. Although some guiding palliative care documents begin to address this intersection, deeper understanding and exploration are needed. The goals of this article are to (1) describe and articulate the impact of structural and ecological factors on the comfort children and families can attain near the end of life; (2) describe how to address these factors to support children and families in attaining comfort, and maybe even flourish, at end of life; and (3) provide an agenda for research that addresses how palliative care research can advance health equity and how a focus on equity can advance palliative care science. A variety of inequities reinforce social vulnerability and disadvantage throughout the life span and can have profound effects on children, particularly children with serious illness or at the end of life. Ethical care for these children requires recognition of the social determinants of comfort.
Mooney-Doyle K; Mendola A; Naumann WC; Svynarenko R; Lindley LC
Journal of Hospice and Palliative Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000902" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000902</a>
A Plateau in Pediatric Palliative Program Prevalence
child; human; letter; palliative therapy; prevalence; quality of life
The prevalence of Pediatric Palliative Care (PPC) programs for children significantly increased over the past two decades. In more recent years, however, evidence suggests a plateau in program expansion and service reach, despite the current reality that only 80% of children’s hospitals offer PPC programs and only half have access to hospice care for children. In reconciling historic trends in PPC program growth with current limitations in access and scope, events and lessons from the past 6 years’ plateau should inform future programmatic development. The purpose of this report is to describe and comment on trends in inpatient PPC program growth from 2015 to 2020. Recommendations for national expansion of PPC programs are included.
Weaver MS; Shostrom VK; Kaye EC; Keegan A; Lindley LC
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.07.008</a>
Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia
child; female; male; human; article; retrospective study; health care planning; hospice care; medicaid; primary medical care
Introduction: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. Method(s): This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service claim from 2011 to 2013. Our outcome of interest concerned whether concurrent hospice care impacted primary care visits. Result(s): Of the 460 pediatric decedents in rural Southern Appalachia, 42% continued to visit their primary care provider during hospice enrollment, whereas 51% received concurrent hospice care. Concurrent hospice care was significantly related to pediatric primary care visits (beta = 2.31; p < .001). Discussion(s): Findings revealed that receipt of concurrent hospice care impacted primary care. Children in concurrent care were twice as likely to continue to receive care from their primary care provider. This finding is consistent with our hypothesis; however, the magnitude of the finding was unexpected given their residence in medically underserved areas. Copyright © 2022 National Association of Pediatric Nurse Practitioners
Fornehed MLC; Svynarenko R; Lindley LC
Journal of Pediatric Health Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedhc.2022.05.005" target="_blank" rel="noreferrer noopener">10.1016/j.pedhc.2022.05.005</a>
Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study
Children; End-of-life; Health care services; Hospice care; Pediatric
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention. OBJECTIVES: To examine the health care services, unique clusters of health care services, and characteristics of the children in the clusters. METHODS: Multiple data sources were used including national Medicaid claims data. Children under 21years in pediatric concurrent hospice care were included. Using Medicaid categories assigned to claims, health care services were distributed across 20 categories. Latent class analysis was used to identify clusters of health care services. Demographic profiles of the clusters were created. RESULTS: The 6,243 children in the study generated approximately 500,0000 non-hospice, health care service claims while enrolled in hospice care. We identified 3 unique classes of health care services use: low (61.1%), moderate (18.1%), and high (20.8%) intensity. The children in the 3 classes exhibited unique demographic profiles. CONCLUSIONS: Health care services cluster together in unique fashion with distinct patterns among children in concurrent hospice care. The findings suggest that concurrent hospice care is not a 1-size-fit all solution for children. Concurrent hospice care may be customized and require attention to care coordination to ensure high-quality care.
Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Keim-Malpass J
American Journal of Hospice and Palliative Medicine
2022
<a href="http://doi.org/10.1177/10499091211018661" target="_blank" rel="noreferrer noopener">10.1177/10499091211018661</a>
Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model
Concurrent hospice care; Incremental cost analysis; Medicaid; Pediatric hospice care
BACKGROUND: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. OBJECTIVE(S): The purpose was to identify costs and compare concurrent care and standard hospice care costs by estimating the average incremental Medicaid cost of care over time. METHOD(S): Using national Medicaid data of 18 147 hospice children and a multilevel generalized linear model, we calculated the incremental costs of receiving concurrent vs standard hospice care. We used the total cost of care over the last year of life. Increments for the analysis were hospice length of stay, stratified to 1 day, 2-14 days, and 15 + days. RESULT(S): Overall, compared to standard hospice care, enrollment in concurrent hospice care was significantly associated with an increase in outpatient care and prescription drug costs. For a stay of 1 day, concurrent hospice care decreased inpatient costs and increased costs of prescription drugs. For stays between 2 and 14 days, concurrent hospice decreased total costs and inpatient costs, but increased prescription drug costs. With a hospice stay of 15 + days, concurrent hospice had significantly higher costs across all measures, including total costs, inpatient costs, outpatient costs, and prescription drug costs. CONCLUSION(S): This study provides critical insight into incremental costs of receiving concurrent vs standard hospice care. More research is needed to understand how concurrent hospice lengthy hospice stays are associated with increases of costs.
Cozad MJ; Svynarenko R; Hinds PS; Mack JW; Keim-Malpass J; Lindley LC
American Journal of Hospice and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091221089337" target="_blank" rel="noreferrer noopener">10.1177/10499091221089337</a>
A Narrative Review of Pediatric Respite Care Initiatives in the United States
Child; Hospices; Medicaid; Respite Care; United States
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Ferragamo T; Pituch KJ; Sorkin T; Simon N; Lindley LC; Weaver MS
Journal of Hospice and Palliative Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/NJH.0000000000000867" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000867</a>
Comparison between Rural and Urban Appalachian Children in Hospice Care
Appalachian Region; Child; Hospices; Medicaid; Retrospective Studies; Rural; Urban
Objective The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. Methods Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson chi2 for proportions and the Student t test for means. Results Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice. Conclusions Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted. Copyright © Lippincott Williams & Wilkins.
Fornehed MLC; Svynarenko R; Keim-Malpass J; Cozad MJ; Qualls KA; Stone WL; Lindley LC
Southern Medical Journal
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.14423/SMJ.0000000000001365" target="_blank" rel="noreferrer noopener">10.14423/SMJ.0000000000001365</a>
Unraveling EPSDT and Pediatric Hospice Care: An Exploratory Policy Analysis
Early and Periodic Screening Diagnosis and Treatment; Medicaid; Pediatric concurrent hospice care; Pediatric hospice care
Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and specifically concurrent hospice care. Objective(s): The study purpose was to identify policy guidance on EPSDT and pediatric hospice care from state Medicaid documents. Method(s): We conducted a descriptive exploratory study, using state-level Medicaid hospice documents. Manuals, policy transmittals, provider memos, policy updates, and other related documents were searched from 50 states and the District of Columbia. We created a comprehensive data extraction tool that enabled us to identify EPSDT-specific information. The appraisal of the documents was conducted under 3 main a priori themes: definitions, function, and administration. Result(s): Eleven states included EPSDT in their hospice documentation. Definitions for concurrent care and palliative care were sparse and inconsistent. Four states defined medically necessary criterion. Several states did not integrate EPSDT into the hospice or concurrent care benefit, while EPSDT functioned as part of the Medicaid hospice benefit in 3 states and another 4 included it in their concurrent hospice care program. Among all the states, procedures for EPSDT program administration varied widely, including care coordination and payment. Conclusion(s): We found significant variation in state documents on EPSDT and pediatric hospice care. Clear guidelines and consistent standards regarding EPSDT services and how they interface with hospice, concurrent hospice care, and palliative care would improve care for children and families.
Lindley LC; Weaver MS
American Journal of Hospice and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091221079329" target="_blank" rel="noreferrer noopener">10.1177/10499091221079329</a>
Choiceless options: when hospital-based services represent the only palliative care offering
availability; palliative care; pediatric; rural
Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only viable choice due to geographic gaps in service coverage. Gaps exist not only in access to these key services but also in service quality without national pediatric service standards. While families from rural regions may express a goal to be home with their child for relational and communal care purposes the current setting of services may limit the feasibility of home-based care. Several potential pediatric systems changes (workforce, finance, policy) have the capacity to create and sustain a care model that allows a child with complex, chronic, or life-limiting diagnoses to experience a home other than the hospital. The existence of community-based pediatric palliative and pediatric home-based hospice services with a sustained workforce and high-quality national standard for children would bolster the ultimate congruence of a family's preference with actual care choices. IMPACT: Families of children with life-limiting diagnoses may express a preference to be home together. Disparities in access to community-based pediatric palliative care and hospice exist for children, particularly in rural regions. These gaps may translate into families experiencing hospital-based settings as the only feasible care model which may result in care escalations and medicalization. Expansion of the community-based workforce and development of pediatric-specific standards for key palliative services would increase home-based care options for families. This paper acknowledges the pediatric palliative and hospice availability crisis in rural regions and urges for improved access to high-quality, community-based services for children.
Weaver MS; Lindley LC
Pediatric Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1038/s41390-021-01909-5" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01909-5</a>
Pediatric End-of-Life Care in Rural America: A Systematic Review
systematic review; pediatric palliative care; pediatric end-of-life; pediatric hospice; rural health care; rural hospice
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.
Stone W; Keim-Malpass J; Cozad MJ; Fornehed MLC; Lindley LC
American Journal of Hospice and Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">10.1177/10499091211064202</a>
A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care
Medicaid; constipation; pediatric hospice care; concurrent hospice care; pediatric end of life
Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluate the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011-2013) were analyzed. Children who were younger than 21 years enrolled in hospice care and had a hospice enrollment between January 1, 2011, and December 31, 2013, were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18 152 children, approximately 14% of participants were diagnosed or treated for constipation from a nonhospice provider during hospice enrollment. A higher proportion of children received nonhospice care for constipation in concurrent hospice care, compared with standard hospice (19.5% vs 13.2%), although this was not significant (β = .22, P < .05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and nonhospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.
Lindley LC; Keim-Malpass J; Cozad MJ; Mack JW; Svynarenko R; Fornehed MLC; Stone W; Qualls K; Hinds PS
Journal of Hospice & Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000810" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000810</a>
Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013
pediatric; Child; United States; Hospices; Medicaid; Hospitalization; Patient Protection and Affordable Care Act; hospice care; end-of-life care; concurrent hospice care
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiving life-prolonging therapy. There are gaps in understanding factors associated with pediatric concurrent hospice care use. The objectives were to examine the prevalence of concurrent hospice care overtime and investigated the relationship between medical complexity and concurrent hospice care among Medicaid children. DESIGN AND METHODS: We used national Medicaid data and included children less than 21 years with an admission to hospice care. Medical complexity was defined with four criteria (i.e., chronic conditions, functional limitations, high health care use and substantial needs). Using multivariate logistic regression, we evaluated the influence of medical complexity on concurrent hospice care use, while controlling for demographic, hospice, and community characteristics. RESULTS: Thirty-four percent of the study sample used concurrent hospice care. Medical complexity was unrelated to concurrent hospice care. However, the four individual criteria were associated. A complex chronic condition was negatively related to concurrent hospice care, whereas technology dependence, multiple complex chronic conditions, and mental/behavioral disorders were positively associated to concurrent care use. PRACTICE IMPLICATIONS: These findings suggest that concurrent hospice care may be important for a subset of medically complex children with functional limitations, high health utilization, and substantial needs at end of life.
Keim-Malpass J; Cozad MJ; Svynarenko R; Mack JW; Lindley LC
Journal for Specialists in Pediatric Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jspn.12333" target="_blank" rel="noreferrer noopener">10.1111/jspn.12333</a>
Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care
pediatric hospice care; hospice length of stay; medicaid; concurrent hospice care; care continuity; emergency department use; hospice live discharge; inpatient admission
BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries.MethodsUsing national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared.ResultsConcurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (? = 2.76, P < .001) and reduced hospice live discharges (? = ?2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (? = 2.09, P < .001) or inpatient care (? = .007, P < .05) transitions during hospice enrollment.ConclusionOur study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.
Lindley LC; Cozad MJ; Mack JW; Keim-Malpass J; Svynarenko R; Hinds PS
American Journal of Hospice and Palliative Medicine
2021
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<a href="http://doi.org/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">10.1177/10499091211056039</a>
End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
concurrent hospice care; healthcare services; infants; latent class analysis; neurological conditions; nursing; pediatric hospice care; pediatrics
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.
Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Fortney CA
Journal of Neuroscience Nursing
2021
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<a href="http://doi.org/10.1097/jnn.0000000000000615" target="_blank" rel="noreferrer noopener">10.1097/jnn.0000000000000615</a>
Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships
Hospice; Medicaid; Palliative care; Palliative Medicine; Pediatrics
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .
Johnson KA; Morvant A; James K; Lindley LC
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-049968</a>
Identifying Patterns of Pediatric Mental and Behavioral Health at End of Life: A National Study
end-of-life care; hospice care; Medicaid; pediatric hospice care; pediatric mental and behavioral health
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in hospice between January 1, 2011, and December 31, 2013, and latent class analysis, this study identified 4 distinctive classes of children. Neurodevelopment and anxiety class (26.5% of the sample) had 41.3% of children of 15 years or older, who had an average of 1.4 MHBH comorbidities and took 17 medications; 29.1% had physical health comorbidities, and 23% were dependent on technology. In the Behavior and Neurodevelopment class (20%), 53.1% of the children were between ages 6 and 14 years, who had an average of 2 MHBH comorbidities and took 17 medications. In the Physiology class (43.4%), 65.5% of children were younger than 5 years, had 1 MHBH comorbidity, and took 19 medications. In the Mood, Behaviors, and Anxiety class (10.2%), more than 90% of children were older than 6 years, had 4 MHBH comorbidities, and took 30 medications. In the latter 3 classes, approximately half of the children either had physical health comorbidities or were technology dependent. These findings highlight the importance of end-of-life care that accounts for the likely presence of complicated patterns of MHBH conditions.
Svynarenko R; Beebe LH; Lindley LC
Journal of Hospice & Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000800" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000800</a>
Predictive Ability of an Illness Severity Measure: Implications for Nursing Research
pediatric; end-of-life; complex chronic conditions; infant; illness severity; measurement testing
BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories. METHODS: Discrimination, calibration, accuracy, and validation tests were used to examine the predictive performance of the measures. RESULTS: Among the 10,175 infants in the analysis, both measures poorly discriminated-palliative care consultation (C-statistics 0.6396 vs. C-statistics 0.5905) and any inpatient procedure (C-statistics 0.6101 vs. C-statistics 0.5160). The Hosmer-Lemeshow goodness-of-fit tests revealed good calibration for both measures. The original measure was more accurate in predicting end-of-life outcomes-palliative care consultation (Brier Score 0.3892 vs. 0.7787) and any inpatient procedures (Brier Score 0.3115 vs. 0.4738). CONCLUSIONS: The revised measure did not perform any better than the original in predicting end-of-life outcomes among infants.
Lindley LC; Fortney CA; Cozad MJ
Journal of Nursing Measurement
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1891/JNM-D-19-00106" target="_blank" rel="noreferrer noopener">10.1891/JNM-D-19-00106</a>
Cost of Pediatric Concurrent Hospice Care: An Economic Analysis of Relevant Cost Components, Review of the Literature, and Case Illustration
end-of-life; scoping review; pediatric hospice care; cost analysis; pediatric concurrent care
Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few studies have examined pediatric concurrent care, none has explored the economics of this care delivery approach for medically complex children. Objective(s): The purpose of this study was to identify the cost components relevant for an economic analysis of pediatric concurrent hospice care and demonstrate the use of the cost components in an economic case illustration. Method(s): A scoping review of the hospice cost literature was conducted to identify article focused on hospice costs that were published in the journal literature from 2000 to 2019. A preliminary economic analysis was also conducted using a cost-minimization approach with data from a large mid-Atlantic pediatric hospice provider. We compared costs between concurrent versus standard hospice care for children. Result(s): Fifteen hospice cost articles were identified and no article on concurrent care costs. Most articles in the scoping review focused on hospice personnel costs, followed by supplies/equipment, and other. Personnel and costs were higher for standard hospice children compared with concurrent care, whereas concurrent care children had higher supplies/equipment costs. Conclusion(s): Identifying cost components are critical to economic analysis of pediatric concurrent care. These findings provide preliminary evidence about the difference in costs between concurrent and standard hospice care for children.
Lindley LC; Richar CS; Hoit T; Steinhorn DM
Journal of Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2020.0495" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0495</a>
Pediatric Complex Chronic Conditions: Evaluating Two Versions of the Classification System
complex chronic conditions; hcup kid; infants; positive predictive value; sensitivity; specificity
The original pediatric complex chronic conditions (CCC) classification system developed in 2000/2001 is the gold standard in classifying children with life-limiting illnesses. It was significantly modified in 2014; yet the two systems have not been evaluated. The objective of this study was to evaluate the agreement and validity of the original versus the modified CCC classification systems. Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID) data from 2012 was used with a sample of infant decedents less than 1 years. The agreement (i.e., Cohen's Kappa Statistic) and validity (i.e., sensitivity, specificity, and positive predictive value [PPV]) statistics were calculated. Among the 10,175 infants that were classified, the modified system performed well in identifying infants who had a CCC, and it captured infants that the original classification did not. The modified system represents an improvement over the original, but additional testing is warranted.
Lindley LC; Cozad MJ; Fortney CA
Western journal of nursing research
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0193945919867266" target="_blank" rel="noreferrer noopener">10.1177/0193945919867266</a>
Who are the children using hospice care?
Palliative Care/sn [Statistics & Numerical Data]; Male; Infant Newborn; Young Adult; Child; Humans; Professional-Family Relations; Palliative Care/mt [Methods]; Adolescent; Socioeconomic Factors; Female; Child Preschool; Infant; California; Nurse-Patient Relations; Hospice Care/sn [Statistics & Numerical Data]; Neuromuscular Diseases/nu [Nursing]; Pediatric Nursing/mt [Methods]; Pediatric Nursing/sn [Statistics & Numerical Data]; Health Services Needs and Demand/og [Organization & Administration]; Health Services Needs and Demand/sn [Statistics & Numerical Data]; Hospice Care/mt [Methods]
PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics of 76 children in hospice. RESULTS: The predisposing, enabling, and need characteristics of children were identified. Children who used hospice were a diverse group with community resources that enabled them to access care while presenting with serious health needs. Children enrolled in hospice were more likely older (15-20 years of age), resided nearer a pediatric hospice, and had a serious health condition such as neuromuscular disease with multiple comorbidities. PRACTICE IMPLICATIONS: With this knowledge, pediatric nurses can improve their clinical practice by targeting conversations with families and children most in need of hospice care.
Lindley LC; Shaw SL
Journal for Specialists in Pediatric Nursing
2014
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<a href="http://doi.org/10.1111/jspn.12085" target="_blank" rel="noreferrer noopener">10.1111/jspn.12085</a>
End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
Emergency Service; Hispanic Americans; Hospice Care/ut [Utilization]; Hospices/ut [Utilization]; Hospitalization; Palliative Care/ut [Utilization]; Terminal Care/mt [Methods]; Adolescent; California; Cardiovascular Diseases/mo [Mortality]; Child; Congenital Abnormalities/mo [Mortality]; Delivery of Health Care; Female; Health Services Accessibility; Hospital/ut [Utilization]; Humans; Infant; Male; Medicaid; Neoplasms/mo [Mortality]; Policy; Preschool; United States; Young Adult
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. RESULTS: Pediatric hospice accessibility (p < .05), palliative care policy (p < .01), congenital anomalies (p < .01), and cardiovascular conditions (p < .01) were related to hospice enrollment. Usual source of care (p < .001), functional status (p < .001), palliative care policy (p < .01), and private insurance (p < .01) were associated with emergency room utilization, while usual source of care (p < .001), cancer (p < .001), and disability status (p < .01) corresponded with hospital admissions. CONCLUSION: Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children.
Lindley LC; Trujillo LV
Hispanic Health Care International
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/1540415316670900" target="_blank" rel="noreferrer noopener">10.1177/1540415316670900</a>
Prior trauma exposure and serious illness at end of life: A national study of children in the US foster care system from 2005 to 2015
Context: Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention.Objectives: The objectives were to examine the prevalence and type of trauma exposure, and investigate the relationship between prior trauma and serious illness among foster children at end of life.Methods: We used national longitudinal foster care data. We included children who were less than 18 years with residence in the United States. Serious illness (i.e., physical health, mental/behavioral health, developmental disabilities) was measured via the foster care files.
Lindley LC; Slayter EM
Journal of Pain and Symptom Management
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1016/j.jpainsymman.2018.06.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.06.001</a>
Nursing Unit Environment Associated with Provision of Language Services in Pediatric Hospices
Background Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use corresponds with improved patient comprehension of illness and care options, we lack an understanding of how the nurse work environment affects the provision of these services.
Methods Data were obtained from the 2007 National Home and Hospice Care Survey and included a study sample of 1251 pediatric hospice agencies. Variable selection was guided by structural contingency theory, which posits that organizational effectiveness is dependent upon how well an organization’s structure relates to its context. Using multivariate logistic regression, we analyzed the extent to which nursing unit environment predicted provision of translation services and interpreter services.
Lindley LC; Held ML; Henley KM; Miller KA; Pedziwol KE; Rumley LE
Journal of Racial & Ethnic Health Disparities
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s40615-016-0224-1" target="_blank" rel="noreferrer noopener">10.1007/s40615-016-0224-1</a>
Pediatric hospice and palliative care: designing a mobile app for clinical practice
Technology
no abstract Key Points * Assemble an interdisplinary team to design the mobile app to meet the needs of clinical users. * Plan for marketing, “keeping it fresh,” and large data volumes when implementing a mobile app. * See beyond the current application and vision future uses for your mobile app.
2014-07
Lindley LC; Zhou W; Mack JW; Li Xueping
CIN: Computers, Informatics, Nursing
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/CIN.0000000000000084" target="_blank" rel="noreferrer">10.1097/CIN.0000000000000084</a>
Geographic Access to Hospice Care for Children With Cancer in Tennessee, 2009 to 2011
cancer; hospice care; certificate of need; geographic access
The geographic interface between the need for and the supply of pediatric hospice may be critical in whether children with cancer access care. This study sought to describe the geographic distribution of pediatric hospice need and supply and identify areas lacking pediatric hospice care in Tennessee over a 3-year time period. Using ArcGIS, a series of maps were created. There was a consistent need for care among children with cancer across the state. Most urban areas were supplied by pediatric hospices, except the Knoxville area. Areas within the state were identified where the supply of pediatric hospice care declined, while the need for hospice care was unchanging. This study has important regulatory implications for clinicians practicing in certificate of need states such as Tennessee.
2014-07
Lindley LC; Edwards SL
The American Journal Of Hospice & Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049909114543641" target="_blank" rel="noreferrer">10.1177/1049909114543641</a>