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Parents of adolescents with cancer (AWC) provide critical support throughout the cancer journey and could offer key insights into support needs. This prospective study aimed to obtain parent perspectives on peer support needs of AWC. Ten individual parents (9 mothers and 1 father) completed a survey and a semistructured interview. Four themes were identified: cancer journey challenges; emotions, reactions, and coping; personal support preferences; and AWC's support needs. Parents recognized that AWC require various support, but lacked insight into their specific peer support desires. Next step interventions should focus on peer support for AWC, while also incorporating peer support for parents. [ABSTRACT FROM AUTHOR]

Adolescents and young adult (AYA) oncology care has evolved to address their unique supportive care needs, yet deficiencies remain. We planned a multiphase sequential mixed methods study beginning with focus groups (FGs) with AYAs receiving care at the Princess Margaret Cancer Centre, to improve supportive care delivery. Herewith, we report on the preliminary findings from first phase of project and outline future expected goals. Our findings suggest four major themes identified from FG discussion with AYAs: (1) having peer-driven support, (2) incorporating hybrid approach to information delivery, (3) integrating general practitioners in AYAs care, and (4) providing AYAs-specific supportive care programs. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to assess the sources of COVID-19 information used, behavioral changes in response to the pandemic, and factors associated with adherence to social distancing guidelines among adolescents and young adults (AYAs) with cancer during the COVID-19 pandemic. Methods: We conducted a self-administered online survey of AYAs with cancer (aged 18–39 years) diagnosed between ages 15 and 39 and living in Canada during January and February 2021. Data were summarized using descriptive statistics. Multiple logistic regression was used to identify the factors associated with adherence to the social distancing guidelines. Results: In total, 805 AYAs were included. Participants were most likely to obtain COVID-19-related information from social media (60.5%), news reports (51.6%), and medical professionals (46.5%). The preferred modes of receiving information were websites of cancer organizations (47.9%), social media (44.8%), and medical professionals (40.2%). The common behavioral changes in response to the COVID-19 pandemic included wearing a protective mask (60.2%), avoiding crowded and public places (56.9%), and abiding by social distancing rules (49.4%). On multivariable analysis, participants were more likely to adhere to social distancing rules if they were women, unemployed or collecting disability/unemployment benefits, or had a personal income of <$40,000 in year 2020 (p < 0.05). Conclusion: Social media and websites of cancer organizations are the preferred modes of COVID-19 information. Since many AYAs are nonadherent to preventative health measures, cancer organizations should help develop and disseminate digital resources that provide tailored information to AYAs with cancer during this pandemic. [ABSTRACT FROM AUTHOR]

Adolescents with cancer (AWC) in pediatrics may not have adequate opportunities for peer support. This mixed methods study aimed to characterize peer support needs of AWC during or shortly after treatment. Ten AWC with median age 16.5 (range 14–18) years completed a survey and semistructured interview. Three themes were apparent: cancer journey difficulties, current support system, and peer support perspectives. Participants felt incompletely understood by existing supports, lacked connection with other AWC, and craved experiential information. Peer support interventions should be flexible, facilitate various interactions, and include social media. The next step is to implement and evaluate an intervention. [ABSTRACT FROM AUTHOR]

Background: The Princess Margaret Cancer Centre (PM) established the adolescent and young adult (AYA) oncology program in 2014 to address the unique needs of AYA by delivering targeted, evidence-based care through a multidisciplinary team. Methods: We performed a retrospective analysis of patients who underwent a consultation with the PM AYA program from 2014 to 2020. The association between the health domain concerns reported and age at consultation, cancer diagnoses, and time since diagnosis was analyzed using chi-square test of independence in SPSS. Results: In our cohort of 1128 AYA, the median age at assessment was 28.2 years. The most common diagnoses were lymphoma (n = 251, 22.2%), leukemia (n = 207, 18.4%), and breast cancer (n = 162, 14.4%). The most common concerns reported were related to fertility (n = 882, 78.2%) and work/school (n = 472, 41.8%). Fertility concerns were most common in 25–34 age group (443/540, 82.0%) and work-/school-related concerns were highest in 18–24 age group (191/355, 53.8%). Diagnoses significantly affect majority of concerns reported. Fertility concerns were most common in AYA consulted near diagnosis, while body image-, exercise-, and diet-related concerns were more frequently reported, while on active treatments. Conclusions: Supporting fertility concerns remains the cornerstone of any successful AYA program. Work-/school-related concerns deserve more elucidation and attention. We identified important patterns in the health-related concerns of AYA, especially as they relate to age, diagnoses, and time since diagnosis. This insight will guide us for improving patient-centered care delivery to AYA. [ABSTRACT FROM AUTHOR]

Purpose: This study describes the prevalence of fertility preservation (FP) knowledge, discussions, and engagement in a heterogeneous sample of Canadians diagnosed with cancer in young adulthood and tests the relationship of these variables with later post-traumatic growth (PTG). Methods: Data were taken from the Young Adults with Cancer in their Prime (YACPRIME) study, a national cross-sectional survey of Canadians diagnosed with cancer as young adults. This subanalysis included 463 individuals, ages 20–39 years (mean = 30.28, standard deviation = 4.68, 88% female), diagnosed after 2006. Participants self-reported demographics, responded to questions regarding their experience with FP, and completed the PTG inventory. Results: In total, 81% reported awareness of risk, 52% discussed FP, and 13% pursued FP. PTG was higher for those with knowledge of fertility risk [F (3, 455) = 3.26, p = 0.021], when controlling for sex and on treatment status, but did not differ between those who discussed FP versus not, or made arrangements versus not. Those who reported not engaging in FP because of their own choice [F(3, 402) = 5.98; p = 0.001] or their doctor's recommendation not to delay treatment [F(3, 402) = 3.25; p = 0.022] reported significantly higher PTG, when controlling for sex and on-treatment status. Financial reasons, lack of knowledge about FP, and age were not related to PTG. Conclusions: This study demonstrates that FP discussions and uptake remain low, highlighting the need for continued education and efforts to improve access to intervention. Knowledge of risk, along with making the choice to prioritize treatment over FP, was related to higher PTG, suggesting informed decisions made early in treatment may support positive psychosocial outcomes. [ABSTRACT FROM AUTHOR]

An area of concern affecting the quality of life of childhood cancer survivors (CCS) is that of sexual dysfunction (SD), which may be a result of both physical and psychosexual challenges associated with cancer and its treatment. This is especially pertinent as CCS are known to experience diminished quality of life compared to peers. Relevant to SD, cancer and its associated treatment are associated with negative effects on body image and romantic relationships, as well as overall physical and mental health. Although CCS have been shown to have SD at higher rates than the general population, this is often under-recognized and CCS commonly report that it is not addressed by their health care providers. To guide future research and improve clinical screening and treatment practices for SD, we performed a narrative review of this understudied topic to summarize existing knowledge of the incidence, risk factors, pathophysiology, and rates of screening for SD in CCS. We also outline current gaps in knowledge and directions for future research. [ABSTRACT FROM AUTHOR]

Purpose: Group mindfulness-based interventions are emerging as a promising, nonstigmatizing, and cost-effective strategy that may improve the well-being of individuals living with cancer. This study is a pilot pre–post mixed-method study to examine the feasibility, acceptability, and effects of an 8-week Mindfulness-based Cognitive Therapy group for Young Adults with Cancer (YA-MBCT). Methods: We approached young adults with cancer, who enrolled in YA-MBCT groups, offered at a large cancer hospital in Toronto, Ontario, Canada. Feasibility and acceptability were assessed through attendance rate and a postintervention satisfaction scale. Psychosocial outcomes were evaluated with a pre–post questionnaire package, with validated self-report measures, assessing depression, anxiety, perceived stress, quality of life, mindfulness, and self-compassion. Qualitative interviews were completed among a subset of participants to gain additional feedback. Results: Participants were 70 young adults with cancer, recruited from five YA-MBCT groups. Sixty participants (85%) attended a minimum of six of eight sessions, and overall satisfaction rates were high. All psychosocial outcomes demonstrated statistically significant changes (p < 0.01), with medium to large effect sizes (Cohen's d > 0.5). Qualitative interviews (n = 14) demonstrated overall positive views about the intervention, and provided insight into unique age-specific benefits, including reducing fear of cancer recurrence, improving body image, and creating a sense of belonging. Conclusion: The YA-MBCT is feasible and acceptable among young adults with cancer, with the potential to improve psychosocial outcomes. Our preliminary results should be replicated with larger studies with an active control group. [ABSTRACT FROM AUTHOR]

Purpose: Fertility is a concern for young women with breast cancer. We explore patient preferences for chemotherapy and whether women will trade-off survival benefits to maintain fertility following standardized information delivery. Methods: During a standardized interview, outcomes associated with adjuvant chemotherapy and 5 years of tamoxifen (CT) or 5 years of tamoxifen alone (NoCT) were described to participants. A threshold task was performed, in which each participant participated in two scenarios: (1) 10% absolute survival benefit from treatment and (2) 25% absolute survival benefit from treatment. The threshold point represented the reduction in fertility post-treatment that a participant would accept before she would trade-off CT benefit. Descriptive statistics were used to characterize participants. Demographic factors (age, marital status, parity at diagnosis, and education) associated with willingness to trade-off survival benefits were evaluated with logistic regression. Results: Analysis comprised 50 women with a median age of 34.5 years (range 25–39 years). Thirty-nine women (78%) completed university education. Thirty-four (68%) and 45 (90%) women in scenarios 1 and 2, respectively, were willing to trade-off all fertility (i.e., reduce fertility to 0% chance of conceiving naturally) to undertake CT and maintain survival benefits. Eight (16%) and three (6%) women in scenarios 1 and 2, respectively, chose to not pursue CT at all to maintain natural fertility. Regression analysis did not identify any variables that were predictive of participants' preferences. Conclusion: Most women with breast cancer are not willing to trade-off survival benefits of adjuvant therapy to maintain fertility. [ABSTRACT FROM AUTHOR]

Cancer therapy can result in infertility in childhood cancer survivors; however, little is known about how young adolescent males make sense of infertility and potential future parenthood. What's more, research shows that many healthcare professionals in Canada do not discuss fertility preservation (FP) with this vulnerable population. This study examines how male adolescent childhood cancer survivors understand infertility as a long-term effect of cancer treatments. We used a narrative analysis to examine 16 interviews with 14–18-year-old males. The findings from this research illustrate that FP discussions may raise meaningful questions for young men about how they see themselves and construct their identities. The findings also demonstrate that young men's beliefs about FP may be informed by family narratives, and it shows that biological parenthood may be important to adolescent males. [ABSTRACT FROM AUTHOR]

Purpose: We aimed to evaluate the effectiveness of an adult-based adolescent and young adult (AYA) cancer program by assessing patient satisfaction and whether programming offers added incremental benefit beyond primary oncology providers (POP) to address their needs. Methods: A modified validated survey was used to ask two questions: (1) rate on a 10-point Likert scale their level of satisfaction with the information provided to them by their POP and (2) did the AYA consult provide added value on top of their POP. Young people at PM were recruited over two separate time points spaced 1 year apart. Descriptive statistics was used to report demographics and survey responses. Differences in demographics between cohorts 1 and 2 were compared using Student's t-tests. Results: Participants were an average of 31 years (range 15–39) of age; (Cohort 1 = 137; Cohort 2 = 130) and were dominated by diagnoses of leukemia, lymphoma, and breast cancer. More patients had a consultation with the AYA program in 2016 (Cohort 2 = 55/130, 42%) compared to 2015 (Cohort 1 = 34/137, 25%, p = 0.026). Mean satisfaction scores (±SD) with information provided by POP in AYA domains in both cohorts combined were highest among (1) cancer information (8.09 ± 2.22), (2) social supports (7.45 ± 2.52), and (3) school/work (7.42 ± 2.88). When evaluating the incremental benefit of the AYA-dedicated team, statistically significant added value was perceived in 5/10 domains, including school/work (p < 0.001), social supports (p < 0.001), physical appearance (p = 0.009), sexual health (p = 0.01), and fertility (p < 0.001). Conclusions: Participants were satisfied with the information provided by their POP and still declared incremental added benefit of the AYA program. Cancer centers should continue to advocate for AYA focused programming with ongoing evaluation. [ABSTRACT FROM AUTHOR]

Sexual health is an important consideration for young adults with cancer; however, oncology healthcare providers are often not equipped with strategies to approach these problems in a systematic way. To address this gap in adolescents and young adults (AYA) care, a one-day international Sexual Health Symposium was held before the Global AYA Cancer Congress (Edinburgh, December 2016). The goals of the symposium were to (1) provide a forum, where international AYA experts had the opportunity to share their knowledge regarding AYA sexual health and (2) develop a guideline for healthcare professionals to screen for and intervene on sexual health issues. This review focused on commonly encountered concerns: (1) management of climacteric symptoms, (2) sexual dysfunction in young men, (3) contraception during and after cancer therapy, and (4) psychosocial issues and care. [ABSTRACT FROM AUTHOR]

In the article, the author discusses the issue of fertility preservation (FP) among adolescent and young adult (AYA) members of the lesbian, gay, bisexual, and transgender (LGBT) population who are suffering from cancer, particularly in the U.S.

Purpose: We sought to gain insight into perspectives around core domains of adolescent development-romantic relationships, sexual relationships, and fertility-from the vantage point of Canadian adolescents and parents during and after cancer treatment. Methods: Twenty adolescents (12-17 years old at interview) and 20 parents (who may or may not have had an adolescent interviewed) participated in this study. Using a semistructured guide, adolescents and parents were interviewed separately. All interviews were audio-recorded and transcribed. Transcribed interview data were independently coded according to the study objectives by two trained analysts. Codes were organized into categories that reflected emerging themes. Discrepancies in coding were resolved through discussion with the lead investigator. Results: Qualitative analysis revealed main themes for adolescents and parents related to: (1) romantic relationships (opinions on the importance of dating in the context of cancer, expectations that cancer will impact future relationships, dating as a source of moral support, and limited opportunities to engage with partners); (2) sexual relationships (thoughts related to the impact of cancer on future sexual relationships); (3) fertility (initiating treatment as a primary concern and fear of infertility and perceived consequences); and (4) recommendations for care (access to knowledge and support through adolescent-friendly and accessible means). Conclusion: Findings from this study highlight cancer-specific relationship and fertility issues faced by adolescents and provide important direction to the development of interventions that may ultimately improve the psychosocial health of adolescents during and after cancer treatment. [ABSTRACT FROM AUTHOR]

An 18-year-old male with a history of Charcot-Marie-Tooth disease (CMT) presented with metastatic Ewing sarcoma to the lungs. He had been followed by several healthcare professionals who ascribed his enlarging 23 cm gluteal mass to his CMT. The patient experienced a significant delay in diagnosis, not uncommon in sarcoma. This case explores the various system and cognitive errors that contributed to this delay. [ABSTRACT FROM AUTHOR]