Emergency Department Use in Adolescent and Young Adult Cancer Early Survivors from 2006 to 2020.

Purpose: Understanding emergency department (ED) use in adolescent and young adult (AYA) survivors could identify gaps in AYA survivorship. Methods: We conducted a cohort study of 7925 AYA survivors (aged 15-39 years at diagnosis) who were 2-5 years from diagnosis in 2006-2020 at Kaiser Permanente Southern California. We calculated ED utilization rates overall and by indication of the encounter (headache, cardiac issues, and suicide attempts). We estimated rate changes by survivorship year and patient factors associated with ED visit using a Poisson model. Results: Cohort was 65.4% women, 45.8% Hispanic, with mean age at diagnosis at 31.3 years. Overall, 38% of AYA survivors had ≥1 ED visit (95th percentile: 5 ED visits). Unadjusted ED rates declined from 374.2/1000 person-years (PY) in Y2 to 327.2 in Y5 (p change < 0.001). Unadjusted rates declined for headache, cardiac issues, and suicide attempts. Factors associated with increased ED use included: age 20-24 at diagnosis [relative risk (RR) = 1.30, 95% CI 1.09-1.56 vs. 35-39 years]; female (RR = 1.27, 95% CI 1.11-1.47 vs. male); non-Hispanic Black race/ethnicity (RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white); comorbidity (RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none); and public insurance (RR = 1.99, 95% CI 1.70-2.32 vs. private). Compared with thyroid cancer, cancers associated with increased ED use were breast (RR = 1.45, 95% CI 1.24-1.70), cervical (RR = 2.18, 95% CI 1.76-2.71), colorectal (RR = 2.34, 95% CI 1.94-2.81), and sarcoma (RR = 1.39, 95% CI 1.03-1.88). Conclusion: ED utilization declined as time from diagnosis elapsed, but higher utilization was associated with social determinants of health and cancer types.

Post-traumatic stress symptoms, post-traumatic stress disorder, and post-traumatic growth among cancer survivors: a systematic scoping review of interventions.

The detrimental effects of Post-Traumatic Stress Symptoms (PTSS) and Post-Traumatic Stress Disorder (PTSD) and the benefits of Post-Traumatic Growth (PTG) are well established for cancer survivors. Increased cancer survival rates necessitate an understanding of how these two paradoxical outcomes, PTSS/PTSD and PTG, are targeted through interventions. This systematic scoping review aims to (a) examine existing evidence on interventions targeting PTSS/PTSD and/or PTG among cancer survivors and (b) identify knowledge gaps to inform future research. Following the six steps of a scoping review, 76 articles met the inclusion criteria. Quantitative articles were examined using descriptive analysis. Frequency counts of the collated data were tabulated into summary tables. Qualitative articles were reviewed using meta-synthesis. Most articles were quantitative (n = 52) and targeted PTG (n = 68) through promising intervention approaches such as psychotherapy, mindfulness, physical activity, and psilocybin-assisted therapy. Three key implications for future research and practice were synthesized: (1) mechanistic considerations for intervention design that provide a roadmap for rigorous and theoretically-grounded research; (2) the need for improved representation of cancer survivors in trials; and (3) potential facilitators of intervention efficacy. Together, these findings can direct future research to optimize interventions to reduce PTSS/PTSD and promote PTG achievement among cancer survivors.

A Thin Line Between Helpful and Harmful Internet Usage: Embodied Research on Internet Experiences Among Adolescent and Young Adult Cancer Patients.

Purpose: The purpose of this study was to expand upon findings from a prior Delphi study of adolescent and young adults' (AYAs') preferences for cancer resources. Utilizing an embodied approach, this study intended to elucidate a deeper and nuanced understanding of the expressed benefits and risks of engaging in cancer-related online interactions. Methods: Using Gale et al.'s framework method for qualitative, multidisciplinary health research and Thanem and Knights's embodied research methods for the social sciences, an investigative team of embodied researchers (AYA cancer patients turned researchers) conducted semistructured in-depth interviews with AYA cancer patients (n = 10) diagnosed between ages 15 and 39 years. To generate themes, researchers identified commonalities and differences within the qualitative data, and indexed codes according to the agreed analytic framework. Furthermore, by fully engaging with personal reflexivity, bracketing, and analytic memos across data collection and analysis, the investigative team elucidated benefits and risks of embodied research. Results: Findings impart evidence on AYAs' needs for internet-based content at the time of cancer diagnosis, use of the internet to fulfill cancer-related needs, perception of gaps in online cancer resources, and advice to other AYA cancer patients accessing internet-based information and support. Content analysis of interview data on participants' descriptions of personal engagement with the internet revealed beneficial themes of empowerment and harmful themes of fear-inducing consequences. Conclusions: In our rapidly evolving context of postpandemic internet reliance, developers of online cancer content should prioritize and respond to the nuanced vulnerabilities of AYAs. Future research must include socioeconomically disadvantaged participants to better understand practical challenges and promote health equity.

Burden of chronic diseases among sarcoma survivors treated with anthracycline chemotherapy: results from an observational study.

AIM: Cardiovascular disease is a leading cause of mortality among long-term cancer survivors treated with large total doses of doxorubicin. An increase in coronary artery disease (CAD) among childhood cancer survivors by age 45 has been observed and is driven by primarily anthracycline chemotherapy and to a lesser extent chest radiation that includes the heart in the radiation field. The risk factors and associated chronic diseases (hypertension, etc.) are well known for CAD and can be often prevented or treated, thus reducing the risk of CAD in these patients. We piloted a risk-based survivorship clinic in an academic medical center to characterize the distribution of risk factors for CAD and improve the quality of life in a population of sarcoma survivors treated with doxorubicin. METHODS: We followed a prospective cohort of sixty-one survivors of bone and soft tissue sarcoma treated with doxorubicin chemotherapy (> 400 mg/m2) and at least 2 years post-therapy attending the sarcoma survivorship clinic. We collected clinical, demographic data, and patient reported outcomes via PROMIS questionnaires annually. RESULTS: We demonstrated a high burden of chronic diseases in this population. Among six chronic conditions that are known risk factors for CAD (hypertension, diabetes, obesity, chronic inflammation, kidney disease and dyslipidemia), more than one-fourth (26%, 16/61) of patients had three or more of these risk factors at baseline visit, and 49% (30/61) had two or more. CONCLUSION: The results of this pilot study support the presence of modifiable CAD risk factors in this population of sarcoma survivors. Evidence-based guidelines for high-risk survivors of rare cancers are needed.

Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time?

BACKGROUND: The objective of the current study was to examine social functioning among adolescents and young adults (AYAs) within the first 2 years after a cancer diagnosis and compare their scores with population norms and identify trajectories of social functioning over time and its correlates. METHODS: A multicenter, longitudinal study was conducted among 215 AYA patients with cancer aged 14 to 39 years. A total of 141 patients completed a self-report measure of social functioning within the first 4 months of diagnosis and again at 12 months and 24 months later. RESULTS: AYA patients with cancer were found to have significantly worse social functioning scores around the time of diagnosis (52.0 vs 85.1; P<.001), at the 12-month follow-up (73.1 vs 85.1; P<.001), and at the 24-month follow-up (69.2 vs 85.1; P<.001) when compared with population norms. Significant improvements in social functioning from baseline to the 12-month follow-up were observed; however, social functioning levels remained stable thereafter. Among participants, 9% demonstrated consistently high/normal social functioning, 47% demonstrated improved social functioning, 13% were found to have worsening social functioning, and 32% demonstrated consistently low social functioning. AYA patients with cancer who had consistently low social functioning were more often off treatment at the time of follow-up, reported more physical symptoms and higher levels of distress at baseline and follow-up, and perceived less social support at baseline compared with the other 3 groups. CONCLUSIONS: Although improved over time, social functioning still was found to be compromised 24 months after the primary diagnosis. Nearly one-third of these patients remain at risk of poor social functioning. Reducing physical symptoms and psychological distress and enhancing social support by interventions during the period after treatment may potentially help these young survivors to better reintegrate into society. Cancer 2017;123:2743-51. © 2017 American Cancer Society.

Psychometric Evaluation of an Adolescent and Young Adult Module of the Impact of Cancer Instrument.

PURPOSE: To develop and evaluate a new instrument that measures unique aspects of long-term survivorship for people diagnosed with cancer as Adolescent and Young Adult (AYA), not measured by existing tools. METHODS: A new candidate instrument-the Impact of Cancer for Adolescent and Young Adult (IOC-AYA) cancer survivors-was developed and administered to AYA cancer survivors aged 18-35 years who were 15-29 years old when diagnosed with cancer. Psychometric properties of newly derived scales were assessed. RESULTS: Factor analyses of items derived seven new and specific subscales: Social Life; Uncertainties, Worries and Wonders; Cognitive Function; Sense of Purpose/Life Goals; Identity; Health Behaviors; and Health Literacy. Two separate and conditional subscales were formed: Relationship Concerns (partnered/unpartnered) and Having Children (at least one child/no children). Internal consistency measurements for these subscales ranged from 0.70 to 0.90. Expected associations within and among IOC-AYA subscales and standardized measures of quality of life were observed. CONCLUSION: Psychometric analyses indicated that this initial version of the IOC-AYA measures distinct and relevant constructs for survivors diagnosed with cancer in adolescence and young adulthood. Future work is needed to confirm the responsiveness to change and further validate the instrument in multiple and representative samples. Use of the IOC-AYA instrument in research and clinical practice will inform the development of psychosocial and supportive care interventions that not only minimize or prevent long-term deleterious effects of cancer but also promote positive adaptation, resilience, and the achievement of age-specific developmental tasks.

Social well-being among adolescents and young adults with cancer: A systematic review.

BACKGROUND: A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. METHODS: A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain. RESULTS: AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. CONCLUSIONS: Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks.

Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future.

Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group (PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled "Next Steps in Adolescent and Young Adult Oncology" on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer.

Adoption and cancer survivors: Findings from a learning activity for oncology nurses.

BACKGROUND: To the authors' knowledge, little is known regarding the rate at which cancer survivors successfully adopt a child or about their experiences negotiating a costly, and perhaps discriminatory, process regarding the prospective parent's health history. The current study describes the results of a learning activity in which nurses contacted an adoption agency to learn more about the process for survivors with the goal of helping nurses provide patients with accurate information for making a well-informed decision regarding adoption. METHODS: Training program participants identified an adoption agency (local, state, or international) and conducted an interview using a semistructured guide. After the interview, participants created a summary of responses to the questions. The authors examined responses to each question using qualitative content analysis. RESULTS: A total of 77 participants (98% completion rate) across 15 states provided a summary. Responses were distributed across the following categories: adoption costs, steps required for survivors seeking adoption, challenges for survivors seeking adoption, birth parents' reservations, and planned institutional changes to increase adoption awareness. The majority of respondents reported improving their knowledge of adoption and cancer, increased challenges for survivors, and the need to educate patients concerning the realities of adoption policies. The need for a letter stating the survivor was 5 years cancer free was identified as a significant obstacle for survivors. CONCLUSIONS: Nurses are charged with following practice guidelines that include recommendations for appropriate reproductive health referrals. Cancer survivors would benefit from a health care provider who can provide education and concrete information when patients are making a decision about fertility and adoption.

Screening for psychosocial distress: a national survey of oncology social workers.

Oncology social workers are the primary providers of psychosocial care for cancer patients, thus they are well positioned to implement and oversee psychosocial distress screening. A national survey of members of the Association of Oncology Social Work was conducted to examine screening knowledge, attitudes, behaviors, and perceived competency. The findings indicated that most participants screened for psychosocial distress using a standardized instrument and identified institutional and individual barriers to implementing screening. Analyses revealed that social workers who perceived patient benefits from screening and were knowledgeable about guidelines were significantly more likely to implement screening procedures and use a standardized instrument.

Adolescent and young adult oncology. Clinical practice guidelines in oncology.

Cancer is the leading cause of death among the adolescent and young adult (AYA) population, excluding homicide, suicide, or unintentional injury. AYA patients should be managed by a multidisciplinary team of health care professionals who are well-versed in the specific developmental issues relevant to this patient population. The recommendations for age-appropriate care outlined in these NCCN Guidelines include psychosocial assessment, a discussion of infertility risks associated with treatment and options for fertility preservation, genetic and familial risk assessment for all patients after diagnosis, screening and monitoring of late effects in AYA cancer survivors after successful completion of therapy, and palliative care and end-of-life considerations for patients for whom curative therapy fails.

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies.

Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.

Health status and quality of life among non-Hodgkin lymphoma survivors.

BACKGROUND: : A growing body of evidence suggests that long-term survivors with 1 of the more common forms of adult cancer report a quality of life (QOL) similar to that in the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known concerning survivors of adult non-Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, in the current study, the authors compared the QOL status of individuals who reported having active NHL with the QOL status of individuals who were disease-free short-term survivors (STS) (2-4 years postdiagnosis) and long-term survivors (LTS) (> or =5 years postdiagnosis). METHODS: Eligible survivors completed a mailed survey with validated measures, including physical and mental health status measured with the Medical Outcomes Study 36-item Short Form, cancer-related QOL, the Functional Assessment of Cancer Therapy-Lymphoma module, and self-reported impact of cancer. Other data were collected to examine as correlates. RESULTS: : Seven hundred sixty-one survivors identified from 2 North Carolina cancer registries participated. The average survivor was 10.4 years postdiagnosis (range, 2-44 years postdiagnosis) and was age 62.7 years (range, 25-92 years). Survivors with active disease (n = 109) demonstrated worse physical and mental health functioning, worse QOL, and less positive and more negative impacts of cancer compared with disease-free survivors (n = 652; all P < or = .01). No significant differences were observed between STS and LTS. CONCLUSIONS: Although survivors with NHL who had active disease reported more negative outcomes compared with off-treatment survivors, the length of time after diagnosis did not appear to matter with regard to outcomes for STS or LTS. In addition, mixed results from comparisons with general population norms suggested the need for supportive care for this diverse survivorship group.