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Children’s Perspective on Health-Related Quality of Life During Active Treatment for Acute Lymphoblastic Leukemia

An Advanced Content Analysis Approach

Momani, Tha’er G. PhD(c), MPH, RN; Mandrell, Belinda N. PhD, RN; Gattuso, Jami S. MSN, RN, CPON; West, Nancy K. MSN, RN; Taylor, Stephanie L. BSN, RN; Hinds, Pamela S. PhD, RN, FAAN

doi: 10.1097/NCC.0000000000000174
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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.

Author Affiliations: Division of Nursing Research, St Jude Children’s Research Hospital (Mr Momani; Mss Gattuso, West, and Taylor; and Dr Mandrell); and College of Nursing, University of Tennessee Health Science Center, Memphis (Mr Momani and Dr Mandrell); and Children’s National Medical Center (Dr Hinds) and School of Medicine, Department of Pediatrics, George Washington University, Washington, DC (Dr Hinds).

This study was supported in part by a Cancer Center Support Grant (grant CA21765) from the National Cancer Institute and the American Lebanese Syrian Associated Charities.

The authors have no conflicts of interest to disclose.

Correspondence: Belinda N. Mandrell, PhD, RN, Division of Nursing Research, St Jude Children’s Research Hospital, 262 Danny Thomas Pl, Mail Stop 738, Memphis, TN 38105 (belinda.mandrell@stjude.org).

Accepted for publication May 26, 2014.

© 2015 Wolters Kluwer Health | Lippincott Williams & Wilkins