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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. [ABSTRACT FROM AUTHOR]

Objectives: The purpose of this study was to determine the effects of technology-based cancer survivorship care interventions according to the types of intervention and participant characteristics for adult cancer survivors; and the extent to which the types of intervention and participant characteristics moderate the observed effects. Methods: We conducted a systematic review and meta-analysis of randomized controlled trials (RCTs) comparing technology-based survivorship care interventions with control groups for posttreatment adult cancer survivors. Results: A total of 50 RCTs with 422 effect sizes suggested an overall significant treatment effect of technology-based survivorship care interventions. Survivorship care domains, comparison groups, and targeted outcomes were significant moderators influencing treatment effects. Conclusions: Our findings reinforce the value and applicability of technology-based survivorship care interventions that promote skill-building specifically. Interventions addressing multidimensional domains for survivorship care should be developed with advances in technology, which in turn influence enhancing cancer survivors' capacities to address psychosocial challenges. [ABSTRACT FROM AUTHOR]

Cancer diagnosis and treatment can be physically arduous, disrupting patients' social and work lives. Understanding the extent of these problems is key to addressing patients' needs, but specific psychosocial challenges have not yet been well studied in resource-limited settings. A qualitative study was conducted in the capital and two regions of Ethiopia with the aim of exploring psychosocial challenges among cancer patients. A total of 14 in-depth interviews (IDIs) and 16 focus group discussions (FGDs) were done with cancer patients, health professionals, community representatives, and religious leaders. Four separate interview guides were used to facilitate the interviews and discussions. All transcribed documents, field notes, and reflexive memos were entered into NVivo 12 software, and deductive thematic analysis using the social-ecological model was applied to summarize the main findings. At an individual level, emotional distress, suicidal risk, denial, and refusal of treatment were identified immediately after diagnosis while hopelessness, feeling depressed, and fear of death were commonly reported psychosocial challenges during the course of treatment. Involvement of family members in major treatment decisions was recognized at an interpersonal level. Our result also revealed that cancer patients had strong social support from family members and close friends. In the community, traditional medicine and religious rituals were considered an alternative treatment for cancer. The findings indicate that counselling and psychoeducation are crucial for cancer patients, family members, and close friends. Awareness creation programmes should be delivered through collaboration with religious leaders and traditional healers. [ABSTRACT FROM AUTHOR]

This study evaluates the unmet needs of sexual and gender minority (SGM) adolescent and young adult (AYA) cancer survivors by comparing SGM AYA self-rated health (SRH) scores to their non-SGM (i.e., cisgender/heterosexual) counterparts. The Cancer Needs Questionnaire—Young People (CNQ-YP) and self-rated health measures were used to assess unmet needs in AYAs aged 15–39 who had been diagnosed with cancer in the previous ten years (n = 342). Participants were recruited from a National Cancer Institute (NCI) Comprehensive Cancer Center registry using the modified Dillman's method. Self-reported sexual orientation and gender identity (SO/GI) data were collected. Independent t-tests were used to test between-group differences in unmet needs and Pearson's chi-square test was used to determine the difference in SRH scores between SGM and non-SGM AYA cancer survivors. SGM AYA cancer survivors reported greater mean needs than their non-SGM counterparts across all six domains and reported significantly greater needs in the domains of Feelings and Relationships, t(314) = −2.111, p = 0.036, Information and Activities, t(314) = −2.594, p = 0.009, and Education, t(207) = −3.289, p < 0.001. SGM versus non-SGM SRH scores were significantly different, indicating that a higher percentage of SGM AYAs reported poor/fair health compared to those who were non-SGM. Unmet life and activities needs were negatively associated with AYA cancer survivors' SRH, whereas unmet work needs were positively associated with AYA cancer survivors' SRH. An AYA's gender identity (SGM versus non-SGM) was not a moderator. SGM AYAs are an understudied group within an already vulnerable patient population. Unmet psychosocial needs related to one's feelings and relationships, and information and activity needs merit further research to develop tailored interventions that reflect the experiences of SGM AYAs. [ABSTRACT FROM AUTHOR]

Background Global cancer estimations for Ethiopia announced 77 352 new cases in 2020 based on the only population-based registry in Addis Ababa. This study characterizes cancer patients in rural Ethiopia at 8 primary and secondary hospitals between 2014 and 2019. Patients and Methods All clinically or pathologically confirmed cancer cases that were diagnosed between 1 May 2014 and 29 April 2019 were included. A structured data extraction tool was used to retrospectively review patients' charts and descriptive analysis was done. Results A total of 1298 cancer cases were identified, of which three-fourths were females with a median age of 42 years. Breast (38%) and cervical (29%) cancers were the most common among females, while prostate (19%) and oesophageal cancers (16%) were the most common among males. Only 39% of tumors were pathologically confirmed. Nearly two-thirds of the cases were diagnosed at an advanced stage. Surgery was the only accessible treatment option for more than half of the cancer patients, and systemic treatment (except endocrine) was rarely available. One in 5 patients did not receive the recommended surgical procedure, half due to patient refusal or lack of the patient returning to the hospital. Conclusion The pattern of cancer diagnoses in rural hospitals shows an exceptionally high burden in women in their middle-ages due to breast and cervical cancers. Advanced stage presentation, lack of pathology services, and unavailability of most systemic treatment options were common. The surgery was offered to nearly 60% of the patients, showing the significant efforts of health workers to reduce sufferings. [ABSTRACT FROM AUTHOR]

This article addresses issues related to clinical and research approaches to oncofertility for adolescent and young adult (AYA) sexual and gender minority (SGM) cancer patients. Limited attention has been dedicated to understanding the extent to which oncofertility services are appropriately and equitably delivered to AYAs with diverse orientations toward sexual orientation, gender identity, and future family. Unresolved challenges to conducting research with this vulnerable population perpetuate a lack of adequate knowledge about SGM AYA oncofertility needs. Therefore, the purpose of this paper is to inform considerations of sex, gender identity, and sexual orientation for investigations that include SGM AYAs. In order to improve the knowledge base and clinical services for this population, we discuss (1) challenges to sampling this population; (2) categorization and survey logic (e.g., skip patterns) in light of fluid sexual orientation and gender identities; and (3) clinical implications of accurately assessing sex and gender for oncofertility research and practice. We also recommend strategies for producing inclusive and accurate assessments of sexual and gender identity categories in both research and clinical encounters with SGM AYAs. Incorporating "queer insights" into empirical research – that is, positioning queer theory at the center of oncofertility study design – is suggested as a future direction for oncofertility research and practice. [ABSTRACT FROM AUTHOR]

Purpose: Technology-assisted interventions are essential in supporting cancer survivors' psychosocial outcomes, especially for childhood, adolescent, and young adult (AYA) cancer survivors, a tech-savvy generation. This study aims to systematically evaluate review and meta-analyze technology-assisted interventions for childhood and AYA cancer survivors. Methods: Following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines, the study team used a pre-set of key words and searched studies across 11 electronic databases and 4 professional websites, and conducted a manual search of reference lists from published reviews. Meta-analysis of small sample size corrected Hedges' g was conducted using meta-regression with robust variance estimation. Results: Final analysis included a total of 28 clinical trials, including 237 effect sizes reported an overall statistically significant treatment effect of technology-assisted psychosocial interventions for childhood and AYA cancer survivors, g = 0.382, 95% confidence interval (CI) 0.243 to 0.521, p < 0.0001. Subgroup analysis revealed that distraction-based interventions and interventions for psychosocial and emotional health were overall statistically significant, whereas interventions for childhood and AYA cancer survivors' cancer knowledge outcomes and physical and functional health outcomes were statistically nonsignificant. Moderator analysis found intervention target was a significant moderator. Conclusions: Technology-assisted interventions for childhood and AYA cancer survivors were overall effective across domains of survivorship outcomes. Favorable evidence was found primarily for childhood cancer survivors with limited support for AYA cancer survivors. Implications for Cancer Survivors: Although existing technology-assisted interventions are overall promising, research support for cancer survivors from different age groups and with different psychosocial challenges varies and should be considered individually. [ABSTRACT FROM AUTHOR]

To date, the health‐related quality of life experiences of adolescents and young adults (AYA) with cancer have been inconsistently and incompletely captured by existing patient‐reported outcome (PRO) measures. The National Institutes of Health Patient‐Reported Outcomes Measurement Information System (PROMIS) represents the state of the art for measurement science of PROs and provides an optimal approach for addressing these measurement challenges and catalyzing future patient‐centered research in AYA oncology. [ABSTRACT FROM AUTHOR]

Background:Trying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life (HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL. Material and methods:This study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18–39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors. Results:One hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p < 0.05). In addition, AYA lymphoma survivors less often had a spouse/partner and more often had a lower educational level compared to the normative population. Linear regression analyses showed that being unemployed, female gender, having one or more comorbid conditions, high levels of fatigue and psychological distress were most strongly associated with HRQoL. Conclusions:These findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. Cancer 2015;121:2993-3000. © 2015 American Cancer Society. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

We greatly appreciate the thoughtful letter from Husson, Sodergren, and Darlington. Within the US-based National Clinical Trials Network and the National Cancer Institute's Community Oncology Research Program, there are efforts underway to foster cross-group collaborations and develop consensus recommendations for patient-reported outcome (PRO) assessments among AYAs. The total disease burden in AYAs accounts for approximately 6% of cancer cases both nationally and internationally.3,4 Thus, there is a need to identify shared goals, collaborate, and develop multinational AYA research studies to maximize the yield from observational studies and clinical trials. [Extracted from the article]

The article presents a study which compares the quality of life (QOL) status of individuals who reported having active non-Hodgkin lymphoma (NHL) with the QOL status of individuals who were disease-free short-term survivors (STS) and long-term survivors (LTS). Result shows that there was no significant differences between STS and LTS. Researchers concluded that mixed result from comparisons suggested the need for supportive care for diverse survivorship group.

Pediatric, adolescent, and young adult (PAYA) cancer survivors suffer from multiple domains of adverse psychosocial and behavioral outcomes during and after their cancer treatment. This study conducted a systematic review and metaanalysis of psychosocial, behavioral, and supportive interventions for PAYA cancer survivors. We searched 11 electronic databases, 4 professional websites, and manual search of reference lists in existing reviews. We selected randomized controlled trials and controlled trials without randomization focusing on PAYA cancer survivors across six outcome domains. We included 61 studies (4,402 participants) published between 1987 and 2020. Overall risk of bias across studies was low. We identified an overall moderate and statistically significant treatment effect size for PAYA cancer survivors across six outcome domains. psychosocial, behavioral, and supportive interventions were overall effective for PAYA cancer survivors. However, interventions were not effective for certain outcome domains, and less effective among AYA versus pediatric cancer survivors. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To examine the implications of use of differential thresholds for studying medical Posttraumatic Stress Disorder (PTSD). Methods: Self-report data from 6,542 young adult survivors of childhood cancer and 374 of their siblings were used to create clearly differentially defined groups to compare prevalence, correlations and predictors of posttraumatic stress. Results: Prevalence of posttraumatic stress in survivors compared to siblings differed by definition used, ranging from an odds ratio of 4.21 (95% CI 2.11–8.38) when posttraumatic stress was defined as meeting full symptoms plus functional impairment to 1.42 (95% CI 0.79–2.56) for partial symptoms with functional impairment. Re-experiencing symptoms did not substantially contribute to the ability to identify functional impairment and emotional distress. Although most of the variables associated with posttraumatic stress symptoms and impairment were consistent across definitions of PTSD, marital status and employment demonstrated nonproportional relationships. Conclusions: Choice of the definition used in studying posttraumatic stress after serious illness alters not only epidemiological findings, but also associations with correlates and predictors. This is important in the current debate about the criteria for PTSD in the upcoming DSMV. Further study is needed to determine if these findings are applicable to people exposed to other types of traumatic events. [Copyright &y& Elsevier]