Symptoms affecting children with malignancies during the last month of life:: A nationwide follow-up

OBJECTIVE. In a population-based nationwide survey, we aimed to study symptoms in children with malignancies during the last month of their lives. Understanding which symptoms affect children in the terminal phase of disease is crucial to improve palliative care. METHODS. We attempted to contact all parents in Sweden who had lost a child to cancer during a 6-year period. The parents were asked, through an anonymous postal questionnaire, about symptoms that affected the child's sense of well-being during the last month of life. RESULTS. Information was supplied by 449 (80%) of 561 eligible parents. The symptoms most frequently reported with high or moderate impact on the child's well-being were: physical fatigue (86%), reduced mobility (76%), pain (73%), and decreased appetite (71%). Irrespective of the specific malignancy, physical fatigue was the most frequently reported symptom, and pain was among the 3 most frequently reported. Children who died at 9 to 15 years of age were reported to be moderately or severely affected, by a number of symptoms, significantly more often than other children. The gender of the reporting parent had no significant bearing on any of the symptoms reported. CONCLUSIONS. The most frequently reported symptoms in children with malignancies to be aware of and possibly address during the terminal phase are physical fatigue, reduced mobility, pain, and decreased appetite. Children aged 9 to 15 years are reported to be moderately or severely affected by more symptoms than children in other age groups. Mothers and fathers report a similar prevalence of symptoms.