First name
Jill
Last name
Steiner

Title

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association.

Year of Publication

2023

Number of Pages

e000114

Date Published

02/2023

ISSN Number

1941-7705

Abstract

AIM: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease.

METHODS: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review. Human subject studies and systematic reviews published in English in PubMed, ClinicalTrials.gov, and the Cochrane Collaboration were included. Structure: Although survival for pediatric congenital and acquired heart disease has tremendously improved in recent decades, morbidity and mortality risks remain for a subset of young people with heart disease, necessitating a role for palliative care. This scientific statement provides an evidence-based approach to the provision of primary and specialty palliative care for children with heart disease. Primary and specialty palliative care specific to pediatric heart disease is defined, and triggers for palliative care are outlined. Palliative care training in pediatric cardiology; diversity, equity, and inclusion considerations; and future research directions are discussed.

DOI

10.1161/HCQ.0000000000000114

Alternate Title

Circ Cardiovasc Qual Outcomes

PMID

36633003
Featured Publication
No

Title

From Theory to Patient Care: a model for the development, adaptation, and testing of psychosocial interventions for patients with serious illness.

Year of Publication

2021

Date Published

2021 Mar 05

ISSN Number

1873-6513

Abstract

<p>Psychosocial and supportive care interventions are a cornerstone of palliative care science, yet there is little published guidance regarding how to develop, test, adapt, and ultimately disseminate evidence-based interventions. Our objective was to describe the application of a single intervention-development model in multiple populations of patients with serious illness. Specifically, we use the "Promoting Resilience in Stress Management" (PRISM) intervention as an exemplar for how the Obesity Related Behavioral Intervention Trials (ORBIT) intervention-development model may be applied to: (1) create an initial palliative care intervention; (2) adapt an existing intervention for a new patient-population; (3) expand an existing intervention to include new content; and, (4) consider dissemination and implementation of a research-proven intervention. We began by identifying key psychological and social science theories and translating them a testable clinical hypothesis. Next, we conducted observational studies and randomized trials to design, refine, and standardize PRISM within unique patient-populations. We moved backwards in the ORBIT model when necessary to adapt or expand PRISM content and delivery-strategies to meet patient-reported needs. Finally, we began to explore PRISM's effectiveness using Dissemination and Implementation research methods. Key lessons include the need to ground intervention-development in evidence-based theory; involve patient, clinician, and other stakeholders at every phase of development; "meet patients where they are at" with flexible delivery strategies; invest in the time to find the right scientific premise and the right intervention content; and, perhaps most importantly, involve an interdisciplinary research team.</p>

DOI

10.1016/j.jpainsymman.2021.02.036

Alternate Title

J Pain Symptom Manage

PMID

33677072

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