What makes a good day for you? Responses from pediatric patients with acute lymphoblastic leukemia during their first year of therapy

Date
2010-05
Authors
Taylor, Stephanie
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Publisher
University of Delaware
Abstract
The goal of the study is to explore how pediatric patients with acute lymphoblastic leukemia (ALL) describe what makes a good day during their first year of treatment. This study advances the knowledge base of quality of life (QOL) in children with ALL, specifically the particular influences on their QOL, by asking an open ended question. Unlike past research that typically used Likert-type scales, open ended questions allow patients to report information that may be missed by current QOL tools. Self-reported responses from pediatric patients with ALL, rather than parent-proxied responses as in past studies, also contributes to soliciting information that is usually not volunteered by pediatric patients. This study is an analysis of data collected from St. Jude Children‘s Research Hospital in Memphis, Tennessee. The analysis is just one component of a larger study that explored multiple QOL measures associated with a particular cancer protocol (Total XV). Pamela Hinds and her team at St. Jude Children‘s Research Hospital defined QOL as an overall sense of well-being based on being able to participate in usual activities; to interact with others and feel cared about; to cope with uncomfortable physical, emotional, and cognitive reactions; and to find meaning in the illness experience. One hundred and seventeen children ages 8-18 years old who have ALL were asked ―What makes a good day for you?‖ Analysis resulted in 28 themes. Data were then analyzed according to age, gender, and three time points within their first year of treatment. Across all ages, genders, and time points in treatment, pediatric patients with ALL reported that being able to do their usual activities, such as participating in typical activities or going to school, was the most important factor in contributing to a good day. Significant findings were that teens with ALL reported the absence of physical or mental symptoms as contributing to a good day more than the younger children across all time points; and females reported social interactions with others, especially family and friends, as contributing to a good day more than males. It was also found the percentage of patients reporting the absence of symptoms as contributing to a good day was greatest at the beginning of treatment; and that being told positive treatment-related news or being able to do self care was found to contribute to a good day later in the first year of treatment. The results from this study also indicate that children ages 8-18 can articulate what makes a good day for them.
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