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OBJECTIVE: The purpose of this qualitative study was to compare the lived experiences among extended (one year or less post-treatment) and long-term (three years or more post-treatment) young adult (YA) cancer survivors (ages 18-39 years old). METHODS: Two trained researchers conducted semi-structured interviews inquiring about the overall lived experience of N = 24 YA cancer survivors (n = 12 extended and n = 12 long-term). The same two researchers independently completed line-by-line coding and thematic content analysis. RESULTS: Interviews lasted an average of 41 min and revealed common themes of symptoms, psychosocial concerns, coping, and changes in health behaviors (e.g., nutrition and physical activity). All participants discussed symptoms impairing their quality of life and affecting their fear of recurrence. Specific psychosocial concerns among extended survivors were appearance-related (e.g., hair loss, weight gain) whereas concerns among long-term survivors included job loss, fertility, and financial stress. Coping strategies described by extended survivors were often distraction-based (e.g., watching television to "escape"), while long-term survivors described more active coping strategies (e.g., yoga, meditation, and seeking support from family and friends). Most survivors reflected on limited physical activity or unhealthy eating during treatment; however, nearly all declared healthy eating and physical activity post-treatment to improve well-being. CONCLUSIONS: YA cancer survivors report differing symptoms, psychosocial concerns, and coping strategies across time since treatment. While survivors reported challenges with physical activity and nutrition during treatment, nearly all emphasized the importance of these health behaviors post-treatment. Thus, health behavior interventions could represent a preferred approach to address post-treatment challenges and improve quality of life for YA survivors.
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Sobreviventes de Câncer , Neoplasias , Humanos , Adulto Jovem , Adolescente , Adulto , Sobreviventes de Câncer/psicologia , Qualidade de Vida/psicologia , Sobreviventes , Pesquisa Qualitativa , Adaptação Psicológica , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
Purpose: Studies have shown that financial toxicity can reduce survival, decrease quality of life, and reduce compliance with treatments. The aim of this retrospective study was to investigate material markers of financial toxicity, including insurance coverage, financial assistance, and balances due among adolescent and young adult (AYA) (18-39), adult (40-64), and senior adult (>65) patients with a sarcoma diagnosis after the Affordable Care Act became effective. Methods: This study performed a retrospective analysis of possible indicators within the material domain of financial toxicity in sarcoma patients, a common diagnosis in young adult patients. Indicators of financial toxicity included: insurance status and number of insurances, charity care, accessing financing options, or having an unpaid balance referred to a collection's agency. Results: The cumulative charges per patient were similar between AYA, adult, and senior adult populations at an average of $194,329 (standard deviation [SD] = $321,425), $236,724 (SD = $368,345), and $188,030 (SD = $271,191), respectively. AYA patients were more likely than adult and senior adult patients to have Medicaid coverage (income-based government insurance) (22.1% vs. 8.4% vs. 1.2%), receive charity care (5.3% vs. 2.6% vs. 1.2%), or have a balance referred to a collection's agency (9.2% vs. 5.8% vs. 1.2%). Conclusions: This study suggests that younger cancer patients are more likely to suffer material financial strain and additional financial resources may need to be made available to ensure they can receive care without an increase of financial toxicity markers and undue financial stress.
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Sarcoma , Neoplasias de Tecidos Moles , Adolescente , Adulto Jovem , Estados Unidos , Humanos , Patient Protection and Affordable Care Act , Estudos Retrospectivos , Projetos Piloto , Estresse Financeiro , Qualidade de VidaRESUMO
OBJECTIVE: In the USA, the increase in state-sanctioned medical and recreational cannabis consumption means more young adults (YA) with cancer are using cannabis. Data and information are needed to characterise this use and frame much needed discussions about the role of cannabis in cancer care. To that end, this study's objective was to describe consumption of cannabis in YA with cancer. METHODS: Four hundred seventy-six patients with cancer ages 18-39 years at a large comprehensive cancer centre responded to a survey about their cannabis consumption. The survey was administered online between July 2019 and June 2020, and respondents were anonymous. RESULTS: Fifty-two per cent (n=247) of respondents endorsed use within the last year; of these, half reported using cannabis prior to their diagnosis. Consumption was about equally distributed between smoking/inhalation and eating/drinking cannabis products. Seventy-five per cent of consumers used cannabis at least weekly. Top five primary reasons for use were pain, anxiety, nausea, sleep and recreation. More frequent consumption was associated with greater perceived improvement in certain symptoms. Cannabis products tended to be sourced from friends and family and information from non-medical sources. Most YA reported being comfortable discussing their consumption with providers. CONCLUSIONS: Many YA are using cannabis frequently to manage their cancer-related and treatment-related symptoms. Findings support the need for providers to consider cannabis use in treatment planning and symptom management with YA. Findings should help frame patient and provider discussions and herald much needed research on the effect of cannabis consumption on patient outcomes.
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Purpose: This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ). Methods: Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support. Results: Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system. Conclusion: YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.
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Sobreviventes de Câncer , Neoplasias , Feminino , Adulto Jovem , Humanos , Adulto , Apoio SocialRESUMO
Background: Melanoma constitutes â¼8% of malignancies diagnosed among adolescents and young adults (AYA). Although immunotherapy with checkpoint inhibitor (ICI) has become a standard treatment for melanoma, available data on immune-related adverse events (irAE) among AYA population are still limited. Some early reports suggested that irAE may be more frequent among AYA than other age groups. Methods: We performed a retrospective cohort study of melanoma patients who were previously ICI naive and received ICI at our institution during 2007-2019, comparing the incidences of irAE between AYA and elderly patients. AYA cohort was defined as age 15-39 years and elderly cohort was defined as age >65 years at ICI initiation. Results: Analyses included 153 patients: 48 AYA and 105 elderly. The median age was 31.2 and 72.0 years, respectively. The AYA cohort had better performance status and fewer comorbidities than the elderly cohort. A combined ICI regimen, ipilimumab plus nivolumab, was used more frequently among the AYA than the elderly cohort: 25.0% versus 3.8%, p < 0.001. In univariable analyses, AYA experienced more increased liver enzymes, more hospitalization, but less skin rash. After adjusting for baseline characteristics and treatment regimen in multivariable analyses, AYA was independently associated with a lower incidence of skin rash: odds ratio 0.36 (95% confidence interval: 0.14-0.75), p = 0.006. Conclusion: In this large cohort of melanoma patients undergoing first-line immunotherapy, skin rash was less frequent among AYA than the elderly. Although some toxicities may appear more prevalent among AYA, this was attributable to the higher use of combined ICI regimen.
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Exantema , Melanoma , Humanos , Adolescente , Adulto Jovem , Idoso , Adulto , Pessoa de Meia-Idade , Estudos Retrospectivos , Melanoma/epidemiologiaRESUMO
Purpose: Adolescent and young adult (AYA) oncology patients are less likely to enroll in clinical trials than pediatric patients. After two decades of effort to improve enrollments, challenges remain. We sought to explore where phase II and phase III trials are available for an AYA cohort. Methods: Based on the epidemiology of AYA cancers and outcomes, we assembled a simulated data set of 1000 patients (AYAsims). Available phase II and phase III trials were matched to diseases and treatment setting (relapsed or newly diagnosed) and characterized by sponsor (industry, National Clinical Trials Network [NCTN], investigator initiated) and location (Moffitt Cancer Center [MCC], community or pediatric). Results: The majority of AYAsims had potential first line (64.4%) and/or relapsed (68.1%) trials. The majority of these opportunities were industry-sponsored trials available at MCC. Phase II trials for relapsed cancer were most often at the MCC and more likely to be investigator-initiated trials. Trial availability for histologies varied widely, likely reflective of the overall epidemiology of cancers beyond the AYA age range. Pediatric hospitals offered trials for select cancers but had a trial portfolio that matched the fewest number of AYAsims. Conclusions: In general, newly diagnosed AYA patients have trial enrollment opportunities in both the community and comprehensive cancer center setting with select diagnoses having more trials in pediatric hospitals. Relapsed AYA patients have the most trial opportunities at a comprehensive cancer center. A facile system that navigates patients across health systems would maximize potential AYA trial enrollments.