Literature DB >> 20078405

Symptoms and suffering at the end of life in children with cancer: an Australian perspective.

John A Heath1, Naomi E Clarke, Susan M Donath, Maria McCarthy, Vicki A Anderson, Joanne Wolfe.   

Abstract

OBJECTIVE: To examine the symptoms, level of suffering, and care of Australian children with cancer at the end of life. DESIGN, SETTING AND PARTICIPANTS: In a study conducted at the Royal Children's Hospital, Melbourne, parents of children who had died of cancer over the period 1996-2004 were interviewed between February 2004 and August 2006. Parents also completed and returned self-report questionnaires. MAIN OUTCOME MEASURES: Proportions of children suffering from and treated for various symptoms; proportion of children receiving cancer-directed therapy at the end of life; proportion of children whose treatment of symptoms was successful; location of death.
RESULTS: Of 193 eligible families, 96 (50%) were interviewed. All interviews were conducted in person, and occurred a mean of 4.5 years (SD, 2.1 years) after the child's death. Eighty-four per cent of parents reported that their child had suffered "a lot" or "a great deal" from at least one symptom in their last month of life--most commonly pain (46%), fatigue (43%) and poor appetite (30%). Children who received cancer-directed therapy during the end-of-life period (47%) suffered from a greater number of symptoms than those who did not receive treatment (P = 0.03), but the severity of symptoms did not differ between these groups. Of the children treated for specific symptoms, treatment was successful in 47% of those with pain, 18% of those with fatigue and 17% of those with poor appetite. Of the 61 families who felt they had time to plan where their child would die, 89% preferred to have their child die at home. The majority of children (61%) died at home. Of those who died in hospital, less than a quarter died in the intensive care unit.
CONCLUSIONS: Relatively high rates of death at home and low rates of unsuccessful medical interventions suggest a realistic approach at the end of life for Australian children dying of cancer. However, many suffer from unresolved symptoms, and greater attention should be paid to palliative care for these children.

Entities:  

Mesh:

Year:  2010        PMID: 20078405

Source DB:  PubMed          Journal:  Med J Aust        ISSN: 0025-729X            Impact factor:   7.738


  25 in total

1.  Health Care Reform and Concurrent Curative Care for Terminally Ill Children: A Policy Analysis.

Authors:  Lisa C Lindley
Journal:  J Hosp Palliat Nurs       Date:  2011-03       Impact factor: 1.918

2.  Unmeasured costs of a child's death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer.

Authors:  Veronica Dussel; Kira Bona; John A Heath; Joanne M Hilden; Jane C Weeks; Joanne Wolfe
Journal:  J Clin Oncol       Date:  2011-01-04       Impact factor: 44.544

Review 3.  Systematic review of psychosocial morbidities among bereaved parents of children with cancer.

Authors:  Abby R Rosenberg; K Scott Baker; Karen Syrjala; Joanne Wolfe
Journal:  Pediatr Blood Cancer       Date:  2011-10-28       Impact factor: 3.167

4.  Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial.

Authors:  Joanne Wolfe; Liliana Orellana; E Francis Cook; Christina Ullrich; Tammy Kang; Jeffrey Russell Geyer; Chris Feudtner; Jane C Weeks; Veronica Dussel
Journal:  J Clin Oncol       Date:  2014-03-10       Impact factor: 44.544

5.  Frequency, Severity, and Distress Associated With Physical and Psychosocial Symptoms at Home in Children and Adolescents With Cancer.

Authors:  Vanessa Torres; Michelle Darezzo Rodrigues Nunes; Fernanda Machado Silva-Rodrigues; Lilian Bravo; Kathleen Adlard; Rita Secola; Ananda Maria Fernandes; Lucila Castanheira Nascimento; Eufemia Jacob
Journal:  J Pediatr Health Care       Date:  2019-03-05       Impact factor: 1.812

6.  Investigation of Modifiable Variables to Increase Hospice Nurse Comfort With Care Provision to Children and Families in the Community: A Population-Level Study Across Tennessee, Mississippi, and Arkansas.

Authors:  Erica C Kaye; Melanie Gattas; Ashley Kiefer; Jason Reynolds; Kristina Zalud; Chen Li; Zhaohua Lu; Justin N Baker
Journal:  J Pain Symptom Manage       Date:  2020-07-02       Impact factor: 3.612

7.  End-of-life care of children with diffuse intrinsic pontine glioma.

Authors:  Fyeza Hasan; Kevin Weingarten; Adam Rapoport; Eric Bouffet; Ute Bartels
Journal:  J Neurooncol       Date:  2018-02-03       Impact factor: 4.130

8.  Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study.

Authors:  Joanne Wolfe; Liliana Orellana; Christina Ullrich; E Francis Cook; Tammy I Kang; Abby Rosenberg; Russ Geyer; Chris Feudtner; Veronica Dussel
Journal:  J Clin Oncol       Date:  2015-04-27       Impact factor: 44.544

9.  Perceptions of the Pediatric Hospice Experience among English- and Spanish-Speaking Families.

Authors:  Rachel Thienprayoon; Emily Marks; Maria Funes; Louizza Maria Martinez-Puente; Naomi Winick; Simon Craddock Lee
Journal:  J Palliat Med       Date:  2015-11-30       Impact factor: 2.947

Review 10.  Palliative care for children with cancer.

Authors:  Elisha Waldman; Joanne Wolfe
Journal:  Nat Rev Clin Oncol       Date:  2013-01-22       Impact factor: 66.675

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