Pain, sleep disturbance, and fatigue in children with leukemia and their parents: a pilot study.

OBJECTIVE

To determine the feasibility of collecting symptom data at home from school-age children with acute lymphoblastic leukemia (ALL) and from their fathers and mothers and to obtain initial descriptions of pain, sleep disturbance, and fatigue experienced by the family members at home.

METHODS

Prospective and descriptive.

METHODS

Children's homes in Oregon and southwestern Washington.

METHODS

9 children with ALL (aged 8-16 years), 6 fathers, and 7 mothers. The children received vincristine during the maintenance phase of their outpatient chemotherapy treatments.

METHODS

With age-appropriate, paper-and-pencil diaries and wrist actigraphy, data were collected for three days in the families' homes. Families were reminded by telephone to complete their sleep and activity diaries.

METHODS

Pain, sleep disturbance, and fatigue in school-age children and their fathers and mothers.

RESULTS

Most of the families who were approached indicated willingness to participate in the study. After receiving outpatient chemotherapy, the children reported pain, sleep disturbance, and fatigue data over three days. Fathers and mothers also reported symptoms. Actigraphy showed children waking more often during the night than mothers or fathers.

CONCLUSIONS

Children's pain, sleep disturbance, and fatigue suggest that the symptoms are influencing families' quality of life. Larger studies are needed to examine the symptom patterns and health outcomes of children, fathers, and mothers over the course of chemotherapy.

CONCLUSIONS

Improving sleep and managing pain and fatigue after chemotherapy treatment for children with ALL may improve health outcomes for children and parents.