The pain experience of children with leukemia during the first year after diagnosis.

BACKGROUND: Children with cancer experience pain related to the disease process, the treatment, and the associated procedures. For children with leukemia, the pain experienced after diagnosis has received scant attention. OBJECTIVE: To examine the pain experience, management strategies, and outcomes during the first year after the diagnosis of acute leukemia. METHODS: A longitudinal descriptive approach was used to collect data at seven data points from 95 English- and Spanish-speaking children, ages 4 to 17 years, receiving care in one of three southern California hospitals, and from their English- and Spanish-speaking parents. Age-appropriate instruments were used to examine the variables of pain intensity, location, pattern over time, and quality, as well as strategies for managing pain, perceived effectiveness of management strategies, and functional status. RESULTS: All the children reported pain over the course of the year. Pain intensity scores incorporated the full range of possible responses. For the children 4 to 7 years old, the highest and lowest mean scores, respectively, were 2 and 1.6 (scale, 0-4). For the children 8 to 17 years old, the highest and lowest mean scores, respectively, were 50.1 and 39.5 (scale, 0-100). The most common location of pain was the legs (26.5%) in all seven interviews. Other frequently noted sites were the abdomen (16.6%), head/neck (16.6%), and back (14.2%). The words used most frequently by the older English- and Spanish-speaking children to describe pain were "uncomfortable" (incómodo) and "annoying" (molesto). According to the interviews, the most frequently used strategy for pain management was stressor modification (e.g., medication, sleep, hot/cold, and massage). The most common coping strategies according to a Likert scale rating were "watch TV" (n = 426), "lie down" (n = 421), "wish for it to go away" (n = 417), and "tell my mother or father" (n = 416). The pain intensity scores after pain management were significantly lower for the younger children in three of the seven interviews and for the older children in all seven interviews. For both the younger and older children, functional status (i.e., the ability to engage in routine activities) was above the median score at the seven interviews. CONCLUSIONS: Children with leukemia experience pain throughout the first year of treatment. In this study, the pain was responsive to the management strategies used by the parents and children.