Treatment outcomes for adolescents with cancer have not improved as greatly as in younger children. Treatment adherence has been identified as a contributing factor to poorer outcomes for this age group. Difficulty tolerating symptoms has been associated with not adhering to treatment regimes. Interventions that have sought to improve management of symptoms in adolescents with cancer have not always been effective. One reason may be that an intervention is delivered when adolescents are not ready and willing to receive information. Guiding this study is the Shifting Perspective of Chronic Illness which suggests that individuals with chronic illness shift between an illness and wellness perspective and are more willing to attend to their illness when they assume the illness perspective. Suffering, as with symptom exacerbation, can cause a shift to the illness perspective. This study seeks to identify periods of suffering related to the presence and exacerbation of symptoms across a cycle of chemotherapy, thereby increase understanding of when the adolescent with cancer assumes the illness perspective and would be more willing to receive information. Ultimately, this data will be used to develop an intervention aimed at improving self-management of symptoms in adolescents with cancer. Because recruitment, retention, and data collection can be challenging with adolescents, the feasibility will be examined.
The specific aims are:
- Describe the trajectory (presence and severity) of symptoms (pain, sleep disturbances, fatigue, decreased appetite, and nausea) and describe the variables that may be related to symptoms (anxiety, stress, bone marrow suppression, chemotherapy administration, and gender) in adolescents with cancer across one chemotherapy cycle.
- Examine the relationships between symptom severity and anxiety and stress; and examine the differences in symptom severity by chemotherapy administration, bone marrow suppression, and gender.
- Assess the feasibility of study procedures (e.g., recruitment, retention, data collection). A secondary, exploratory aim of this pilot study that will provide information for future work is to identify strategies that participants are using to manage their symptoms and to describe the perceived effectiveness of these strategies. This nonexperimental, longitudinal study seeks to describe the symptom trajectory and examine factors that influence the symptom experience for a sample of 20 adolescents with cancer. Based upon factors that influence the symptom trajectory, measures will be obtained at four points: on day 1 of chemotherapy (T1); day 2 of chemotherapy (T2); 10 days after the start of chemotherapy, when bone marrow suppression is typically most severe (T3); and day 1 of the next round of chemotherapy (T4). To identify periods of suffering, the presence and severity (trajectory) of pain, difficulty sleeping, fatigue, appetite, and nausea will be assessed. Factors associated with the symptom experience including anxiety (anticipatory anxiety, state-trait anxiety), stress (heart rate variability, salivary alpha amylase) and bone marrow suppression will also be examined. In addition subject interviews will be conducted to evaluate the secondary aim.
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