Abstract B107: Exploring patient-centered themes following diagnosis in a cohort of African American pediatric oncology patients

Abstract

Abstract Introduction: Pediatric patients diagnosed with cancer report lower quality of life and increased psychological distress. Furthermore, African American pediatric oncology patients face unique and extensive obstacles upon diagnosis. The present study sought to identify patient-centered experiences following a cancer diagnosis in a sample of African American pediatric oncology patients. Methods: This study examined semi-structured interviews of pediatric African American oncology patients (N = 13; Mage = 13.54 years; 7-17 years). Interviews were audio recorded and transcribed. Response patterns examining patient perceptions of being diagnosed with cancer were derived through thematic analysis. Results: Four themes related to initial diagnosis emerged: negative emotions, quality of life, cognitions, and physical appearance. The majority of patients disclosed feeling fear, hurt, and sadness in relation to their cancer diagnosis. A myriad of cognitions surrounding initial diagnosis also emerged. Many patients reported being unaware of their diagnosis and reported a sense of confusion related to extended hospitalizations and taking medication. Patients disclosed worry and embarrassment regarding losing their hair (e.g., “my hair is my pride and joy,” and, “the first thing that did come to my mind was my hair. As a teenage girl, I was just like “my hair.”). Patients also expressed worries about quality of life and prognosis. Finally, a fear of the unknown, ability to attend school and activities, and possible death emerged as common themes. Conclusion: This study described perceptions of African American pediatric oncology patients during the initial diagnosis of cancer. Key themes included negative emotions, quality of life, cognitions, and physical appearance. A pattern between cognitions related to life changes due to diagnosis and resulting emotions such as fear emerged. This finding suggested a strong connection between the perceptual aspects of initial diagnosis and patient experiences through treatment, indicating that psychological interventions could serve as a tool to decrease negative emotions. The significant importance of patient-centered education delivered immediately at diagnosis emerged as a significant factor as many patients reported unawareness of their diagnosis (e.g., “I just didn’t know what was going to happen next, like all of the medicine, how they were going to treat it and all that”). Although level of patient education may differ based on family preferences, developmentally appropriate communication may enhance the treatment process for patients, and ultimately decrease psychological distress. These findings also indicate the cultural and historical importance of physical appearance with hair being an important piece of identity for African American patients. These findings highlight the relative importance of investigating patient-centered experiences and culturally appropriate interventions across the illness trajectory from new diagnosis to survivorship, especially among African American pediatric oncology patients. Citation Format: Irene Jacobs, Jennifer Rohan, Andrea Jewell, Kelly Tran, Jasmine Nguyen. Exploring patient-centered themes following diagnosis in a cohort of African American pediatric oncology patients [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B107.