Comparison of Pediatric and Adult Hospice Patients Using Electronic Medical Record Data from Nine Hospices in the United States, 2008–2012

Dingfield, Laura; Bender, Laura; Harris, Pamela; Newport, Kristina; Hoover-Regan, Margo; Feudtner, Chris; Clifford, Sheila; Casarett, David

doi:10.1089/jpm.2014.0195

Cited by 30 publications

(23 citation statements)

References 14 publications

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“…23 To illustrate, children may access PC services for a longer duration and with potentially higher resource needs than adults. 74,91 Thus, the per diem reimbursement rates designed for Medicare-eligible patients may not be sufficient to care for children in the community. 113 Policymakers and providers should work together to develop creative solutions to promote the financial sustainability of CBPPC.…”

Section: Discussionmentioning

confidence: 99%

“…Hospital-based palliative and other specialist teams (e.g., oncology) were instrumental in increasing use of CBPPC by providing referrals to hospice and palliative care agencies. 46,50,52,55,62,73,74 In a retrospective cohort study of 114 children who died of cancer or stem cell transplant, Thienprayoon et al (2013) 46 found an unexpected higher hospice enrollment among minority children, which the authors attributed to end-of-life discussions and hospice referrals by the primary oncologists. Even when not entirely satisfied with hospice services, families often stayed with hospice care at their oncologists' recommendation.…”

Section: Organizational-level Factorsmentioning

confidence: 99%

See 1 more Smart Citation

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Boyden

Curley

Deatrick

et al. 2018

Journal of Pain and Symptom Management

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Section: Discussionmentioning

confidence: 99%

Section: Organizational-level Factorsmentioning

confidence: 99%

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Boyden

Curley

Deatrick

et al. 2018

Journal of Pain and Symptom Management

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show abstract

“…Indeed, a previous study found that children entering hospice care were less than half as likely as adults to have a “do not resuscitate” directive. 13 …”

Section: Discussionmentioning

confidence: 99%

Hospitalizations for mitochondrial disease across the lifespan in the U.S.

McCormack

Xiao

Kilbaugh

et al. 2017

Molecular Genetics and Metabolism

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Importance Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the impact of mitochondrial disease on healthcare utilization in the U.S. across the lifespan. Objectives To describe the characteristics of inpatient hospitalizations related to mitochondrial disease in the U.S., to identify patient-level clinical factors associated with in-hospital mortality, and to estimate the burden of hospitalizations on individual patients. Design Cross-sectional and longitudinal observational studies. Setting U.S. hospitals. Participants Individuals with hospital discharges included in the triennial Healthcare Cost and Utilization Project (HCUP) Kids Inpatient Database (KID) and the National Inpatient Sample (NIS) in 2012 (cross-sectional analysis); individuals with hospital discharges included in the HCUP California State Inpatient Database from 2007 2011, inclusive (longitudinal analysis). Exposure Hospital discharge associated with a diagnosis of mitochondrial disease. Main outcome measures Total number and rate of hospitalizations for individuals with mitochondrial disease (International Classification of Diseases, 9th revision, Clinical Modification code 277.87, disorder of mitochondrial metabolism); in-hospital mortality. Results In the 2012, there were approximately 3,200 inpatient pediatric hospitalizations (1.9 per 100,000 population) and 2,000 inpatient adult hospitalizations (0.8 per 100,000 population) for mitochondrial disease in the U.S., with associated direct medical costs of $113 million. In-hospital mortality rates were 2.4% for children and 3.0% for adults, far exceeding population averages. Higher socioeconomic status was associated with both having a diagnosis of mitochondrial disease and with higher in-hospital mortality. From 2007–2011 in California, 495 individuals had at least one admission with a diagnosis of mitochondrial disease. Patients had a median of 1.1 hospitalizations (IQI, 0.6 2.2) per calendar year of follow-up; infants under 2y were hospitalized more frequently than other age groups. Over up to five years of follow up, 9.9% of participants with any hospitalization for mitochondrial disease were noted to have an in-hospital death. Conclusions and Relevance Hospitalizations for pediatric and adult mitochondrial diseases are associated with serious illnesses, substantial costs, and significant patient time. Identification of opportunities to prevent or shorten such hospitalizations should be the focus of future studies.

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“…Most hospice patients are adults with cancer who receive hospice services for a short time only after foregoing all cancer‐related treatments. Children and families, however, generally wish to keep seeing their pediatric oncology team, so hospice is frequently added as a home‐based team while families are still pursuing therapy, thereby lengthening the time a child receives hospice care . The oncology and hospice teams not only need to communicate effectively during hospice enrollment, but collaborate over many months as children often receive both disease‐directed and hospice care through Concurrent Care for Children, a requirement of the Affordable Care Act …”

Section: Checklist For Hospital To Hospice Sign Out Processmentioning

confidence: 99%

High‐risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out

Brock

Mullaney

2018

Pediatric Blood & Cancer

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K E Y W O R D S :end-of-life care, handoff, hospice, palliative care, pediatric oncology, sign out New trials, targeted agents, and immunotherapy provide families and oncologists with great hope. Yet, for the 20% of pediatric patients who will die of cancer, many reach a point where no further lifeelongating or curative treatments are available. 1 When the hope of living as long as possible is no longer realistic, goals may shift to living as well as possible, with a focus on providing comfort and ongoing care at home. Effective communication, accurate prognostic understanding, early palliative care (PC), and hospice services can help support and guide families through these difficult transitions.Despite variable quality and availability of pediatric hospice services, nearly 50% of children who die of cancer utilize home hospice. 2 Hospice, which cares for over 1.65 million Americans and over 8,000 children and young adults annually, is considered to be the model for quality, compassionate care for people with a life-limiting illness. 3 Hospice is best poised to help children at the end of life by utilizing a teamoriented approach to tailor expert medical care, pain management, and emotional and spiritual support. 3 For the majority of families who prefer that their child's end-of-life care and death occur at home, 4 hospice significantly increases the odds of a peaceful home death. 2,4 Most hospice patients are adults with cancer who receive hospice services for a short time only after foregoing all cancer-related treatments. Children and families, however, generally wish to keep seeing their pediatric oncology team, so hospice is frequently added as a home-based team while families are still pursuing therapy, thereby lengthening the time a child receives hospice care. 2,5 The oncology and hospice teams not only need to communicate effectively during hospice enrollment, but collaborate over many months as children often receive both disease-directed and hospice care through Concurrent Care for Children, a requirement of the Affordable Care Act. 6 While adding hospice services to the care team is in the best interest of the patients and their families, the time of hospice referral is Abbreviations: EMR, electronic medical record; PC, palliative care often a high risk time for families. One parent stated: "The transition [to hospice] didn't go well; it was absolutely abysmal. That's one of the things medicine needs to fix… There needs to be a better way of making sure that when a child is ready to go home with hospice, all the Ts are crossed, all the Is are dotted, and the game plan is made." This period can be marred by provider confusion about overlapping roles of multiple specialists and home care agencies, shock if the oncology team has not prepared the family for the difficult hospice intake questions, frustration by a family who has already explained their values or expected care that is not available, and missed opportunities for excellent communication and care. 6 Families often have a great relationship a...

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Comparison of Pediatric and Adult Hospice Patients Using Electronic Medical Record Data from Nine Hospices in the United States, 2008–2012

Abstract: Pediatric hospice patients differ from adult patients in their broader range of underlying diagnoses and their use of hospice services.

Cited by 30 publications

References 14 publications

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

Hospitalizations for mitochondrial disease across the lifespan in the U.S.

High‐risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out

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