Parental Perceptions of Forgoing Artificial Nutrition and Hydration During End-of-Life Care

Rapoport, Adam; Shaheed, Jenny; Newman, Christine; Rugg, Maria; Steele, Rose

doi:10.1542/peds.2012-1916

Cited by 42 publications

(70 citation statements)

References 33 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…10,12,[21][22][23]26,27,31,[36][37][38] Our findings indicate that in actual conversations parents act in line with this preference. Most parents in our study made an effort to actively participate in the decision-making process, especially when their initial preferences regarding the course of treatment did not correspond with those of the medical team.…”

Section: Discussionsupporting

confidence: 56%

Talking With Parents About End-of-Life Decisions for Their Children

et al. 2015

View full text Add to dashboard Cite

show abstract

Section: Discussionsupporting

confidence: 56%

Talking With Parents About End-of-Life Decisions for Their Children

et al. 2015

View full text Add to dashboard Cite

show abstract

“…This distress, in turn, is associated with poor patient (12–14) and family (15, 16) outcomes. Furthermore, patient HRQOL is a key determinant of parent decision-making at the end of life, impacting participation in phase I clinical trials (17), use of artificial nutrition and hydration (18), and advance care planning (19, 20). …”

Section: Introductionmentioning

confidence: 99%

Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study

Rosenberg

Orellana

Ullrich³

et al. 2016

Journal of Pain and Symptom Management

108

115

View full text Add to dashboard Cite

Context Modifiable factors of health-related quality of life (HRQOL) are poorly described among children with advanced cancer. Symptom-distress may be an important factor for intervention. Objectives We aimed to describe patient-reported HRQOL and its relationship to symptom distress. Methods Prospective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology (PediQUEST) study included primarily patient-reported symptom-distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life [PedsQL] inventory, respectively. Associations were evaluated using linear mixed-effects models adjusting for sex, age, cancer type, intervention arm, treatment intensity, and time since disease progression. Results Of 104 enrolled patients, 49% were female, 89% were white, and median age was 12.6 years. Nine hundred and twenty surveys were completed over nine months of follow-up (84% by patients). The median total PedsQL score was 74 (IQR 63–87) and was “poor/fair” (e.g., <70) 38% of the time. “Poor/fair” categories were highest in physical (53%) and school (48%) compared to emotional (24%) and social (16%) subscores. Thirteen of 24 symptoms were independently associated with reductions in overall or domain-specific HRQOL. Patients commonly reported distress from two or more symptoms, corresponding to larger HRQOL score reductions. Neither cancer type, time since progression, treatment intensity, sex, nor age was associated with HRQOL scores in multivariable models. Among 25 children completing surveys during the last 12 weeks of life, 11 distressing symptoms were associated with reductions in HRQOL. Conclusion Symptom-distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.

show abstract

“…They occur in 25.6% of children with progressive genetic, metabolic or neurological conditions [1]. Parents of children with advanced heart disease report difficulty breathing in the last month of life to be associated with 'a lot' or 'a great deal' of suffering in 77% of children under 2 years and 62% of those over 2 years [2].…”

Section: Introductionmentioning

confidence: 99%