Assessing health-related quality of life at end of life

2004 ◽  
pp. 264-285 ◽  
Author(s):  
Betty R. Ferrell
2020 ◽  
Vol 37 (4) ◽  
pp. 284-295 ◽  
Author(s):  
Ijeoma Julie Eche ◽  
Ifeoma Mary Eche ◽  
Teri Aronowitz

Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively summarized symptom experiences of children with cancer at EOL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and Academic Premier were searched between January 2007 to September 2019 for articles published in English using the MeSH terms: symptom burden or distress AND children with cancer or pediatric cancer or cancer children or oncology and pediatrics AND EOL care or palliative care or death or dying or terminally ill. The inclusion criteria were the following: (a) study designs [randomized controlled trials, nonexperimental, secondary analysis (if aims were distinct from primary studies) and qualitative]; (b) participants <18 years old (died of cancer, had no realistic chance of cure, or had advanced cancer); and (c) focused on symptom experiences/burden at EOL. Exclusion criteria were nonresearch articles, systematic reviews, case studies, reports, and studies that focused on cancer survivors and/or those receiving curative therapies. Twenty-seven articles met inclusion criteria. The most prevalent symptoms—pain, fatigue, dyspnea, and loss of appetitewere associated with impairments in health-related quality of life. Children with brain tumors experienced higher symptom burden compared to those with hematologic/solid malignancies. Children who received cancer-directed therapies experienced disproportionate symptoms and were more likely to die in the intensive care unit compared with those who did not receive cancer-directed therapies. Most common location of death was home. This integrative review indicated that children with cancer were polysymptomatic at EOL. Strategies facilitating effective symptom management at EOL are needed.


2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer

Background: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. Aim: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). Design: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. Setting/Participants: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. Results: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants’ multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Conclusion: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.


2013 ◽  
Vol 116 (2) ◽  
pp. 283-290 ◽  
Author(s):  
Eefje M. Sizoo ◽  
Linda Dirven ◽  
Jaap C. Reijneveld ◽  
Tjeerd J. Postma ◽  
Jan J. Heimans ◽  
...  

2006 ◽  
Vol 175 (4S) ◽  
pp. 150-151
Author(s):  
Jeffrey S. Montgomery ◽  
Bishoy A. Gayed ◽  
Brent K. Hollenbeck ◽  
Stephanie Daignault ◽  
Martin G. Sanda ◽  
...  

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