Browsing by Author "Elledge, Daniel"
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Item Addressing Age-Appropriate Cancer Care for Adolescents and Young Adults(2023) Tran, Kylie; Elledge, Daniel; Hoeft, Alice; Albritton, KarenPurpose: Adolescents and young adults (AYAs), normally defined as patients between 15 and 39 years of age, are often lost in the healthcare system that concentrates primarily on pediatric and adult cancers1. AYA cancer presentation can differ and treatments are less established compared to pediatric and adult cancers2. Many AYA patients are treated in pediatric facilities, which can lead to age-appropriate needs not being met. The goal of this project is to examine the AYA patient experience and assess if AYAs receive age-appropriate care at Cook Children’s Hospital in Fort Worth, Texas. Methods: Patient reported outcomes surveys were administered to AYA patients diagnosed between 1/1/2016 and 1/1/2020 with at least one of the following cancers: acute lymphoblastic leukemia, acute myeloblastic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, testicular germ cell tumor, ovarian germ cell tumor, or sarcoma. Eighty-five patients were eligible to participate in the study. The survey and chart review included information pertaining to demographics, socioeconomic factors, treatment, and diagnosis-related questions. Results: Seventeen patients have completed the survey. Patients rated age-appropriateness and quality of care on a five-point Likert scale. On average, patients rated the following aspects of their care as highly satisfactory for age-appropriateness: communication with medical staff (M = 4.80, SD = 0.40), staff recognition of life events (M = 4.71, SD = 0.46), provider attitude (M = 4.86, SD = 0.37), and support provided to their families (M = 4.82, SD = 0.40). Although still highly rated, the physical environment (M= 4.38, SD = 0.91) and recreational activities (M= 4.35, SD = 0.87) were reported to be slightly lower than the other categories for age-appropriateness. Conclusions: AYA patients face unique challenges related to their cancer presentation and psychosocial needs. Interactions between patients, their physicians, and their environment all contribute to the patients' treatment experience and providing comprehensive, age-appropriate care is important. Overall, patients reported receiving age-appropriate care at Cook Children’s Hospital but reported slightly less satisfaction with the facilities and age-related activities. Based on these findings, continuing to establish age-appropriate resources and physical spaces for AYA patients can greatly enhance their quality of care and treatment experience. Beginning in 2016, Cook Children’s AYA clinic had already initiated changes to establish more supportive resources for AYAs, including creating and renovating a designated AYA lounge and implementing more programmatic psychosocial care through psychological interventions and AYA-specific support groups. References 1. Alvarez, The Lancet Oncology, 2022 2. Smith, Pediatric Blood & Cancer, 2019Item "Going on 18" Examining Survey Responses from Adolescent and Young Adult Cancer Patients(2024-03-21) Spradley, Parker; Elledge, DanielPurpose: Cancer survival rates among adolescents and young adults (AYAs) (aged 15-39 years) have improved at a lower rate than pediatric and older adult populations since 1975. This disparity in survival rate improvement is termed the “AYA gap” in cancer care. AYAs have lower enrollment in clinical trials and are diagnosed at later stages of cancer compared to other age groups. Young adults underutilize healthcare compared to older adults, which leads to worse health outcomes. Financial instability and low medical decision-making confidence have been identified as obstacles to healthcare use in young adults and are increasingly recognized as barriers to AYA cancer care. Cancer requires a high frequency of expensive treatments for optimal management, and identifying and addressing the financial and medical decision-making treatment challenges unique to AYAs may improve survival rates. The purpose of this project is to examine AYA cancer patients’ survey responses related to financial status and medical decision-making confidence. Methods: A site-developed “Going on 18” questionnaire was administered to AYA patients at Cook Children’s Hospital in Fort Worth, TX between 6/2021 and 8/2022. The survey asked questions about demographics, socioeconomic factors, education, mental health, relationships, and thoughts about becoming a young adult. Four questions were selected as determinants of financial status. The frequencies of responses to these questions and the relative percentages of each response were calculated for each categorical variable. Two questions were selected as indicators of feelings toward increased medical responsibility. The content of the subjective responses to these questions was analyzed by authors to separate them into positive, negative, and mixed or neutral attitudes. Results: 25 participants completed the survey. AYA cancer patients feel mostly confident and enthusiastic about their increased medical decision-making responsibilities, stable in their financial situation (71%), and believe they understand their insurance benefits (73%). However, AYAs are remaining financially dependent on their parents into early adulthood (70%). Conclusions: Patients identified specific responsibilities associated with turning 18, expressed feelings of freedom, and are willing to learn. Their responses suggest they want to be in charge of their care and would be receptive to an intervention that provides education and encourages them to think critically about their medical responsibilities. Reliance on parents to manage financial matters may limit participants’ knowledge of treatment-related expenses. Although participants reported high levels of financial stability and understanding of benefits, this result may be due to a lack of involvement in insurance matters. Therefore, patients, especially those who will become financially independent upon turning 18, may still benefit from interventions related to financial responsibilities.