Parent-Reported Symptoms and Perceived Effectiveness of Treatment in Children Hospitalized with Advanced Heart Disease

Molloy, Meaghan A.; DeWitt, Elizabeth S.; Morell, Emily; Reichman, Jeffrey R.; Brown, David W.; Kobayashi, Ryan; Sleeper, Lynn A.; Elia, Eleni G.; Samsel, Chase; Blume, Elizabeth D.

doi:10.1016/j.jpeds.2021.06.077

Cited by 9 publications

(12 citation statements)

References 29 publications

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“…High fatigue scores should trigger a full assessment of other symptoms, as fatigue has been associated with a greater overall symptom burden. 6,72…”

Section: Symptom Management In Patients With Ahdmentioning

confidence: 99%

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

Blume¹,

Kirsch²,

Cousino³

et al. 2023

Circ: Cardiovascular Quality and Outcomes

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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.

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“…High fatigue scores should trigger a full assessment of other symptoms, as fatigue has been associated with a greater overall symptom burden. 6,72…”

Section: Symptom Management In Patients With Ahdmentioning

confidence: 99%

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

Blume¹,

Kirsch²,

Cousino³

et al. 2023

Circ: Cardiovascular Quality and Outcomes

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“…Patients with low functional status were more likely to experience a high symptom burden and suffering. The authors conclude that children with AHD may have an even greater risk of psychiatric morbidity, particularly anxiety and/or depression than the pediatric oncology population (17). Comparably, parent study participants of the above-mentioned PELICAN study reported pain and breathing problems most frequently.…”

Section: Symptoms and Suffering In Children With Advanced Heart Diseasementioning

confidence: 90%

“…Data on symptom burden in children with AHD is limited. A very recent prospective study with 161 hospitalized patients (54% younger than 2 years) provides an overview of the most common symptoms and associated suffering (17). The most frequent symptoms were pain (68%), fatigue (63%) and breathing difficulties (60%).…”

Section: Symptoms and Suffering In Children With Advanced Heart Diseasementioning

confidence: 99%

Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review

Bergsträßer

Lukose

Zimmermann

et al. 2022

Front. Cardiovasc. Med.

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Palliative care for children continues to evolve. More recently, this has also been true in the field of pediatric cardiology, particularly for children with advanced heart disease. In these children, similarly to children with cancer, treatment successes are offset by the risks of long-term morbidities, including premature death. This mini review aims to provide an overview of current knowledge on children suffering from advanced heart disease, their medical care during various phases of illness (including the palliative and end-of-life phase), symptom burden, experiences of parents, prognostic understanding of parents and physicians, and current status of the involvement of pediatric palliative care. In conclusion, the suffering of these children at the end of their young lives is pronounced and many parents feel prepared neither for medical problems nor for the child’s death. An effective and mutually trusting partnership between pediatric cardiology and pediatric palliative care would appear to be a prerequisite for the timely involvement of palliative care in further supporting these children and their families.

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“…1,3 Children with heart failure are more likely to die in the emergency department or during a hospitalization (4.3%) when compared with hospitalized peers without heart failure (0.04%) and adults with heart failure. 1,3 A majority of parents of children with advanced heart disease report considerable symptom burden in their child, 4 and one-third feel underprepared to make medical decisions regarding their child's medical care. 5 Many have sought to understand and describe the health care communication and medical decision-making preferences of young people with serious, life-threatening illnesses given the potential for invasive interventions and/or shortened life expectancy.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents

et al. 2023

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ImportanceDespite high disease morbidity and mortality and complex treatment decisions, little is known about the medical and end-of-life decision-making preferences of adolescents and young adults (AYA) with advanced heart disease. AYA decision-making involvement is associated with important outcomes in other chronic illness groups.ObjectiveTo characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences.Design, Setting, and ParticipantsCross-sectional survey between July 2018 and April 2021 at a single-center heart failure/transplant service at a Midwestern US children’s hospital. Participants were AYAs aged 12 to 24 years with heart failure, listed for heart transplantation, or posttransplant with life-limiting complications and a parent/caregiver. Data were analyzed from May 2021 to June 2022.Main Outcomes and MeasuresSingle-item measure of medical decision-making preferences, MyCHATT, and Lyon Family-Centered Advance Care Planning Survey.ResultsFifty-six of 63 eligible patients enrolled in the study (88.9%) with 53 AYA-parent dyads. Median (IQR) patient age was 17.8 (15.8-19.0) years; 34 (64.2%) patients were male, and 40 patients (75.5%) identified as White and 13 patients (24.5%) identified as members of a racial or ethnic minority group or multiracial. The greatest proportion of AYA participants (24 of 53 participants [45.3%]) indicated a preference for active, patient-led decision-making specific to heart disease management, while the greatest proportion of parents (18 of 51 participants [35.3%]) preferred they and physician(s) make shared medical decisions on behalf of their AYA, representing AYA-parent decision-making discordance (χ2 = 11.7; P = .01). Most AYA participants stated a preference to discuss adverse effects or risks of treatment (46 of 53 participants [86.8%]), procedural and/or surgical details (45 of 53 participants [84.9%]), impact of condition on daily activities (48 of 53 participants [90.6%]), and their prognosis (42 of 53 participants [79.2%]). More than half of AYAs preferred to be involved in end-of-life decisions if very ill (30 of 53 participants [56.6%]). Longer time since cardiac diagnosis (r = 0.32; P = .02) and worse functional status (mean [SD] 4.3 [1.4] in New York Heart Association class III or IV vs 2.8 [1.8] in New York Heart Association class I or II; t-value = 2.7; P = .01) were associated with a preference for more active, patient-led decision-making.Conclusions and RelevanceIn this survey study, most AYAs with advanced heart disease favored active roles in medical decision-making. Interventions and educational efforts targeting clinicians, AYAs with heart disease, and their caregivers are needed to ensure they are meeting the decision-making and communication preferences of this patient population with complex disease and treatment courses.

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Parent-Reported Symptoms and Perceived Effectiveness of Treatment in Children Hospitalized with Advanced Heart Disease

Cited by 9 publications

References 29 publications

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

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

Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review

Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents

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