Affiliation: Harvard University
- Initial validation of the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settingsMariana Roizen
Committee on Quality of Life, Hospital de Pediatria Prof Dr Juan P Garrahan, Pichincha 1890, Buenos Aires, Argentina
Health Qual Life Outcomes 6:59. 2008..Reliability, and known-groups, and convergent validity were tested...
- 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 cancerVeronica Dussel
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, 44 Binney St SM 206, Boston, MA 02115, USA
J Clin Oncol 29:1007-13. 2011..We describe the financial hardship, work disruptions, income loss, and coping strategies of families who lost children to cancer...
- End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of careChristina K Ullrich
Department of Pediatric Oncology, Dana Farber Cancer Institute, Boston, MA, USA
Blood 115:3879-85. 2010..SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals, and opportunities to maximize quality of life...
- Considerations about hastening death among parents of children who die of cancerVeronica Dussel
Center for Outcomes and Policy Research and Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, 44 Binney St, Boston, MA 02115, USA
Arch Pediatr Adolesc Med 164:231-7. 2010....
- Fatigue in children with cancer at the end of lifeChristina K Ullrich
Center for Outcomes and Policy Research, Dana Farber Cancer Institute, Boston, Massachusetts 02115, USA
J Pain Symptom Manage 40:483-94. 2010..Fatigue is a prevalent source of suffering in children with advanced cancer; yet, little is known about it...
- Looking beyond where children die: determinants and effects of planning a child's location of deathVeronica Dussel
Center for Outcomes and Policy Research, Dana Farber Cancer Institute, Boston, MA 02115, USA
J Pain Symptom Manage 37:33-43. 2009..Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD...
- Easing of suffering in children with cancer at the end of life: is care changing?Joanne Wolfe
Department of Pediatric Oncology, Dana Farber Cancer Institute, 44 Binney St, SM 205, Boston, MA 02115, USA
J Clin Oncol 26:1717-23. 2008..We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life...
- Understanding of prognosis and goals of care among couples whose child died of cancerKelly E Edwards
Harvard Medical School, Center for Outcomes and Policy Research, Dana Farber Cancer Institute, Department of Medicine, Brigham and Women s Hospital, Boston, MA 02115, USA
J Clin Oncol 26:1310-5. 2008..We also investigated whether discordance within couples regarding treatment goals was related to parental perception of the child's end-of-life (EOL) experience...