Lauri A Linder1, Kristin Stegenga2, Jeanne Erickson3, Suzanne Ameringer4, Amy R Newman5, Yin-Shun Chiu5, Catherine Fiona Macpherson6. 1. University of Utah & Primary Children's Hospital, Salt Lake City, Utah, USA. Electronic address: lauri.linder@nurs.utah.edu. 2. Children's Mercy Hospital, Kansas City, Missouri, USA. 3. University of Wisconsin-Milwaukee, Milwaukee, Wisconsin, USA. 4. Virginia Commonwealth University, Richmond, Virginia, USA. 5. University of Utah, Salt Lake City, Utah, USA. 6. Seattle Children's Hospital, Seattle, Washington, USA.
Abstract
CONTEXT: Cancer and symptom experiences of adolescents and young adults (AYAs) with cancer can be highly variable, creating challenges for clinicians and researchers who seek to optimize AYAs' health outcomes. Understanding the heuristics AYAs use to designate priority symptoms can provide insight into the meaning they assign to their symptoms and self-management behaviors. OBJECTIVES: This study described the frequency and characteristics of priority symptoms. It qualitatively explored reasons for a symptom's designation as a priority symptom, perceived causes of priority symptoms, and strategies AYAs use to manage priority symptoms. METHODS: Participants in this single-group, longitudinal study reported symptoms using a heuristics-based symptom reporting tool, the Computerized Symptom Capture Tool, at two scheduled visits for chemotherapy. AYAs designated priority symptoms and responded to three short answer questions: What makes this a priority symptom?, What do you think causes it?, and What do you do to make it better? RESULTS: Eighty-six AYAs, 15-29 years of age (median 19 years), identified 189 priority symptoms. Priority symptoms were of greater severity (t = 3.43; P < 0.01) and distress (t = 4.02; P < 0.01) compared with nonpriority symptoms. Lack of energy, nausea, difficulty sleeping, and pain comprised 39% of priority symptoms. Reasons for priority designation included the impact of the symptom and the attributes of the symptom. Categories of self-management strategies included "Physical Care Strategies," "Things I take (or not)," and "Psychosocial Care Strategies." CONCLUSION: Supporting AYAs to identify their priority symptoms may facilitate a more personalized approach to care. Seeking the patient's perspective regarding priority symptoms could enhance patient-clinician collaboration in symptom management.
CONTEXT: Cancer and symptom experiences of adolescents and young adults (AYAs) with cancer can be highly variable, creating challenges for clinicians and researchers who seek to optimize AYAs' health outcomes. Understanding the heuristics AYAs use to designate priority symptoms can provide insight into the meaning they assign to their symptoms and self-management behaviors. OBJECTIVES: This study described the frequency and characteristics of priority symptoms. It qualitatively explored reasons for a symptom's designation as a priority symptom, perceived causes of priority symptoms, and strategies AYAs use to manage priority symptoms. METHODS:Participants in this single-group, longitudinal study reported symptoms using a heuristics-based symptom reporting tool, the Computerized Symptom Capture Tool, at two scheduled visits for chemotherapy. AYAs designated priority symptoms and responded to three short answer questions: What makes this a priority symptom?, What do you think causes it?, and What do you do to make it better? RESULTS: Eighty-six AYAs, 15-29 years of age (median 19 years), identified 189 priority symptoms. Priority symptoms were of greater severity (t = 3.43; P < 0.01) and distress (t = 4.02; P < 0.01) compared with nonpriority symptoms. Lack of energy, nausea, difficulty sleeping, and pain comprised 39% of priority symptoms. Reasons for priority designation included the impact of the symptom and the attributes of the symptom. Categories of self-management strategies included "Physical Care Strategies," "Things I take (or not)," and "Psychosocial Care Strategies." CONCLUSION: Supporting AYAs to identify their priority symptoms may facilitate a more personalized approach to care. Seeking the patient's perspective regarding priority symptoms could enhance patient-clinician collaboration in symptom management.
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