Abstract
In evaluating the outcomes of pediatric palliative care, health-care providers rely at times on the parents' input in evaluating children's quality of life and symptom experience. To date, the number of studies addressing the perspective of parents is scarce. Thus, the purpose of this study was to evaluate the quality of life, symptom prevalence and management, and the quality of palliative care provided to Lebanese children with cancer from their parents' perspectives. A convenience sample of 85 caregivers from the Children's Cancer Center of Lebanon was enrolled in the study over a 1-year period [2010-2011]. Using face- to-face interviews, the administered Arabic questionnaire was a combination of the Pediatric Quality of Life Inventory cancer module and the Memorial Symptom Assessment Scale (both parent's versions), and selected items from the Needs at End of life Screening Tool. The majority of the sample was recruited from the outpatient clinic; mean age of children was 12.5 years with the majority having leukemia. According to parents, children encountered health-related quality of life problems in the areas related to nausea, worry and treatment anxiety. The most common symptoms were feeling irritable, feeling nervous, lack of energy, lack of appetite, pain, and feeling sad. The most treated symptoms were found to be nausea, vomiting, cough, and pain with success rates ranging between 56.3% and 73.7%. According to the parents, cancer children had acceptable health-related quality of life. They experienced physical and psychological symptoms that were inadequately managed by the healthcare team. However, parents were highly satisfied with the provided quality of care by the center. The findings in this study highlight the importance of both physical and psychological symptom management among Lebanese children with cancer.