Pediatric Palliative Care and the Medical Home

Knapp, Caprice; Baker, Kimberly; Cunningham, Colette; Downing, Julia; Fowler‐Kerry, Susan; McNamara, Katrina

doi:10.1089/jpm.2012.0075

Cited by 8 publications

(4 citation statements)

References 10 publications

(7 reference statements)

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“…41 While there are many benefits of a medical home for young people with chronic and life-limiting conditions, 42 an unintended consequence may be increased service utilization as demonstrated by the rise in end-of-life transtions to acute and ambulatory settings. Data did not support the premise that having a ususal source of care would decrease end-of-life transitions for adolescents.…”

Section: Discussionmentioning

confidence: 99%

End-of-Life Transitions and Hospice Utilization for Adolescents

Keim‐Malpass

Lindley

2017

J Hosp Palliat Nurs

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Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15–20 years with a life-limiting illness. A retrospective cohort design used 2007–2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.

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Section: Discussionmentioning

confidence: 99%

End-of-Life Transitions and Hospice Utilization for Adolescents

Keim‐Malpass

Lindley

2017

J Hosp Palliat Nurs

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“…12 –15 We and others have previously reported that providing medical care for children and families at end of life can be challenging for primary care. 16 –20 However, whether pediatric primary care involvement directly influences enrollment in end-of-life care remains incompletely understood.…”

Section: Introductionmentioning

confidence: 99%

Pediatric Primary Care Involvement in End-of-Life Care for Children

Lindley

Nageswaran

2016

Am J Hosp Palliat Care

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Objectives To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. Methods California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations. Results Of the 2,037 children who died between 2007 and 2010, 11% used hospice and 23% home health. Among all children, primary care was not related to hospice use and was associated with home health use [usual source of care (OR=1.83, p<0.05), comprehensive care (OR=1.60, p<0.05), continuous care (low: OR=1.49, p<0.05; moderate: OR=2.57, p<0.05; high: OR=2.12, p<0.05)]. Primary care for children 15 to 20 years was related to hospice use [usual source of care (OR=4.06, p<0.05), continuous care (low: OR=4.92, p<0.05; moderate OR=4.09, p<0.05; high OR=3.92, p<0.05)]. Primary care for children under 5 years was associated with home health use [usual source of care (OR=2.59, p<0.05), comprehensive care (OR=2.49, p<0.05), continuous care (low: OR=2.22, p<0.05; moderate: OR=3.64, p<0.05; high: OR=3.62, p<0.05)]. For children 6 to 14 years, this association was seen with continuous care [moderate: (OR=2.38, p<0.05); high (OR=2.13, p<0.05)]. Home health for children 15 to 20 years was related to continuous care [moderate: (OR=2.32, p<0.05)]. Conclusions Primary care involvement affected hospice use among older age groups and home health use among younger age groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers.

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“…Although the overall coverage score represents an important first step in understanding access and differences in state interpretations, several research gaps exist. Using the socioecological model outlined in Figure 1, we believe there is a need for better links between public policy, infrastructure, health care providers, and a family-centered approach to extend this research by assessing quality outcomes related to HCBS; understanding of family-centered needs regarding timing, frequency, service extensions, preferences with respect to medical homes [35,36], and transition; and formal economic and policy evaluations of components of waiver services to understand their efficacy as well as studies related to the impact of such waivers on family functioning and economic sustainability (ie, return on investment).…”

Section: Discussionmentioning

confidence: 99%

Publicly Funded Home and Community-Based Care for Children With Medical Complexity: Protocol for the Analysis of Medicaid Waiver Applications

Keim‐Malpass¹,

Letzkus²,

Constantoulakis³

2019

JMIR Res Protoc

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Background Children with medical complexity are a group of children with multiple chronic conditions and functional limitations that represent the highest health care utilization and often require a substantial number of home and community-based services (HCBS). In many states, HCBS are offered to target populations through 1915(c) Medicaid waivers. To date, no standard methods or approaches have been established to evaluate or compare 1915(c) waivers across states in the United States for children. Objective The purpose of this analysis was to develop a systematic and reproducible approach to evaluate 1915(c) Medicaid waivers for overall coverage of children with medical complexity. Methods Data elements were extracted from Medicaid 1915(c) approved waiver applications for all included waivers targeting any pediatric age range through October 31, 2018. Normalization criteria were established, and an aggregate overall coverage score was calculated for each waiver. Results Data extraction occurred in two phases: (1) waivers that were considered nonexpired through December 31, 2017, and (2) the final sample that included nonexpired waivers through October 31, 2018. A total of 142 waivers across 45 states in the United States were included in this analysis. We found that the existing adult HCBS taxonomy may not always be applicable for child and family-based service provision. Although there was uniformity in the Medicaid applications, there was high heterogeneity in how waiver eligibility, transition plans, and wait lists were defined. Study analysis was completed in January 2019, and after analyzing each individual waiver, results were aggregated at the level of the state and for each diagnostic subgroup. The published results are forthcoming. Conclusions To our knowledge, this is the first study to systematically evaluate 1915(c) Medicaid waivers targeting children with medical complexity that can be replicated without the threat of missing data. International Registered Report Identifier (IRRID) RR1-10.2196/13062

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Pediatric Palliative Care and the Medical Home

Cited by 8 publications

References 10 publications

End-of-Life Transitions and Hospice Utilization for Adolescents

End-of-Life Transitions and Hospice Utilization for Adolescents

Pediatric Primary Care Involvement in End-of-Life Care for Children

Publicly Funded Home and Community-Based Care for Children With Medical Complexity: Protocol for the Analysis of Medicaid Waiver Applications

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