Children's perspective on health-related quality of life during active treatment for acute lymphoblastic leukemia: an advanced content analysis approach

BACKGROUND Qualitative research provides insight into the cancer experience through the perspective of the pediatric patient. However, somewhat small sample sizes can hinder full discovery of new knowledge and limit interpretation of data. OBJECTIVE The objective of this study was to describe health-related quality of life (HRQOL) reported by children and adolescents in responses to 2 interview questions during treatment for acute lymphoblastic leukemia (ALL) and compare their responses by age, gender, risk group, and time in treatment through a quantitative content analysis approach. METHODS Children and adolescents (N = 150) were asked 2 validated questions in pediatric patients receiving treatment for ALL: "What makes a good day for you?" and "How has being sick been for you?" over 6 treatment time points. Interview data were coded analyzed quantitatively. RESULTS Code frequencies differed significantly by age, gender, risk group, and time in treatment. Adolescents had a greater focus on being with friends, and females generally reported more codes representing negative experiences. Children and adolescents reported being affected by symptoms resulting from cancer treatment. Some adolescents described that being sick positively changed their lives and viewed their illness as a new life experience. CONCLUSION The 2 proposed questions are feasible to use clinically to assess HRQOL in children and adolescents with ALL, and the qualitative codes from their descriptions can be used to identify factors affecting HRQOL of children and adolescents with leukemia. IMPLICATIONS FOR PRACTICE Nurses can use these 2 questions to assess the HRQOL of children and adolescents during and following treatment for ALL.