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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]

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]

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]

Sorafenib and pazopanib, two tyrosine kinase inhibitors (TKI), are widely used in patients with progressive symptomatic desmoid tumors (DT). Limited real-word data is available on long-term outcomes of patients who progressed on, stopped, or continued TKIs. Patients diagnosed with DTs and treated with sorafenib or pazopanib between 2011 and 2022 at 11 institutions were reviewed. Patient history, response to therapy and toxicity were recorded. Statistical analyses utilized Kaplan-Meier and log-rank tests. 142 patients with DT treated with sorafenib (n = 126, 88.7 %) or pazopanib (n = 16, 11.3 %) were analyzed. The median treatment duration was 10.8 months (range: 0.07- 73.9). The overall response rate and the disease control rate were 26.0 % and 95.1 %, respectively. The median tumor shrinkage was − 8.5 % (range −100.0 %- +72.5 %). Among responders, the median time to an objective response was 15.2 months (range: 1.1 to 33.1). The 1-year and 2-year progression-free survival rates were 82 % and 80 %. Dose reductions were necessary in 34 (23.9 %) patients. Grade 3 or higher adverse events were reported in 36 (25.4 %) patients. On the last follow-up, 55 (38.7 %) patients continued treatment. Treatment discontinuation (n = 85, 59.9 %) was mainly for toxicity (n = 35, 45.9 %) or radiological or clinical progression (n = 30, 35.3 %). For the entire cohort, 36 (25.4 %) patients required subsequent treatment. In the 32 responders, only 1 (3.1 %) patient required a subsequent treatment. In patients who discontinued TKI, 25 (44.6 %) with stable disease received subsequent treatment compared to 0 (0.0 %) of responders. This retrospective study represents the largest cohort of DT patients treated with sorafenib or pazopanib to date. Discontinuation of treatment in responders is safe. The optimal treatment duration in patients with stable disease remains to be defined. • Sorafenib and pazopanib are effective treatments for desmoid tumor patients. • Treatment discontinuation should be discussed in radiologically responding patients. • Optimal treatment duration for patients with stable disease remains unknown. [ABSTRACT FROM AUTHOR]

Background: This study investigated prevalence of psychological distress, factors associated with distress, and experiences of Adolescents and Young Adults (AYAs) with cancer during the COVID‐19 pandemic. It also compared distress in this group to previously surveyed Canadian AYAs with cancer in 2018 by the Young Adults with Cancer in their Prime (YACPRIME) study. Methods: A cross‐sectional, online, self‐administered survey of AYAs diagnosed with cancer between 15 and 39 years of age was conducted. Psychological distress was measured by the Kessler Psychological Distress Scale (K10). Associations between variables and high psychological distress (K10 ≥ 25), and comparison of prevalence of psychological distress with the YACPRIME study were done using multivariable logistic regression. Summative qualitative content analysis analyzed participant experiences during this pandemic. Results: We included 805 participants. High psychological distress was present in over two‐thirds of the group (68.0%; 95% CI, 64.7%–71.2%). Employment impact during pandemic (AOR (adjusted odds ratio), 2.16; 95% CI, 1.41–3.31) and hematologic malignancy (AOR, 1.76; 95% CI 1.08–2.97) were associated with higher psychological distress, while older age [AOR, 0.95; 95% CI, 0.92–0.99] and personal income < $40,000 (AOR, 0.38; 95% CI, 0.24–0.58) were associated with lower distress. Adjusted odds of experiencing psychological distress among AYAs with cancer during pandemic compared to pre‐pandemic years was 1.85 (95% CI: 1.36–2.53). Overarching themes of pandemic experiences included: inferior quality of life, impairment of cancer care, COVID‐19 related concerns and extreme social isolation. Conclusion: AYAs diagnosed with cancer are experiencing high psychological distress during this pandemic. Distress screening and evidence‐based interventions to alleviate distress are essential. [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]

Background: Adolescents and young adults (AYAs) diagnosed with cancer are at an increased risk of experiencing social isolation and loneliness secondary to their cancer and its treatment. The physical distancing measures implemented during the COVID-19 pandemic may have further increased loneliness among this group. This study examined the prevalence of loneliness and factors associated with loneliness among AYAs with cancer during this pandemic.Methods: We conducted a self-administered, online, cross-sectional survey of Canadian AYAs diagnosed with cancer between 15 and 39 between January and February 2021. Loneliness was measured using the 3-item UCLA Loneliness Scale. Factors associated with higher levels of loneliness were identified using multiple logistic regression.Results: The analysis included 805 AYAs. The prevalence of loneliness was 52.2% [N = 419, 95% CI (confidence interval) 48.7 to 55.6%]. Individuals who were 18-25 years old [AOR (adjusted odds ratio)1.60, CI 1.03-2.47, p = 0.035], currently undergoing cancer therapy (AOR 1.46, 95% CI 1.03-2.07, p = 0.035), who self-disclosed the presence of a pre-pandemic mental health condition (AOR 2.09, 95% CI = 1.22-3.58, p = 0.007), or were not in a relationship (AOR 2.22, 95% CI 1.57-3.14, p < 0.001) were more likely to report loneliness than others. Participants that lived in rural or remote locations were less likely to experience loneliness (AOR 0.59, 95%CI 0.40-0.87, p = 0.008).Conclusion: One in two AYAs with cancer are feeling lonely during the COVID-19 pandemic. Future studies for developing interventions to target loneliness, particularly for those at greater risk, are necessary to improve the health and quality of life of AYAs with cancer. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15–39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA. [ABSTRACT FROM AUTHOR]

Objective: Cancer patients may turn to social media (SM) to cope with distress. We investigated associations between distress and internet/SM use for cancer information/support. Methods: Adult patients at a Canadian cancer centre completed a cross-sectional survey on sociodemographics, health status, use of cancer online resources and distress (EQ5D-5L). Statistical models adjusted for relevant variables. Results: Of 376 participants, median age was 52 years, time since diagnosis was 1.63 years, 272 (74%) had post-secondary education and 192 (51%) were female. For cancer information/support, 276 (73%) used internet and 147 (39%) SM. Dose response relationships were observed between distress and cancer-related internet (p = 0.02), and SM use (p < 0.001). Respondents using internet/SM for cancer information/support reported greater internet confidence (internet OR = 4.0, 95% CI: 1.9–8.3; SM OR = 4.18, 95%, CI: 1.9–11.3), higher education (internet OR = 3.0, 95% CI: 1.7–5.2; SM OR = 2.21, 95% CI: 1.2–4.1) and were more likely female (internet OR = 2.6, 95% CI 1.5–4.6; SM OR = 2.1, 95% CI: 1.3–3.4). For SM for cancer information/support, more used SM > 30 min daily (OR = 3.4; 95% CI: 2.1–5.7), and were distressed (OR = 1.67, 95% CI: 1.0–2.7). SM benefits were to learn about cancer (93; 25%), distract from cancer (85; 23%) and connect with survivors (81; 22%). SM limitations were privacy (161; 43%), quality (90; 24%) and personal applicability (85; 23%). Females used SM more to connect with survivors than males (p = 0.001). Conclusions: Greater internet confidence, higher education and being female were associated with cancer-related internet/SM use. Distressed cancer patients were also more likely to turn to SM. Privacy concerns may limit SM use for coping. Future research should determine how to optimize SM in caring for and connecting with patients and reduce cancer-related distress. [ABSTRACT FROM AUTHOR]

Background: Among sarcomas, which are rare cancers, many types are exceedingly rare; however, a definition of ultra‐rare cancers has not been established. The problem of ultra‐rare sarcomas is particularly relevant because they represent unique diseases, and their rarity poses major challenges for diagnosis, understanding disease biology, generating clinical evidence to support new drug development, and achieving formal authorization for novel therapies. Methods: The Connective Tissue Oncology Society promoted a consensus effort in November 2019 to establish how to define ultra‐rare sarcomas through expert consensus and epidemiologic data and to work out a comprehensive list of these diseases. The list of ultra‐rare sarcomas was based on the 2020 World Health Organization classification, The incidence rates were estimated using the Information Network on Rare Cancers (RARECARENet) database and NETSARC (the French Sarcoma Network's clinical‐pathologic registry). Incidence rates were further validated in collaboration with the Asian cancer registries of Japan, Korea, and Taiwan. Results: It was agreed that the best criterion for a definition of ultra‐rare sarcomas would be incidence. Ultra‐rare sarcomas were defined as those with an incidence of approximately ≤1 per 1,000,000, to include those entities whose rarity renders them extremely difficult to conduct well powered, prospective clinical studies. On the basis of this threshold, a list of ultra‐rare sarcomas was defined, which comprised 56 soft tissue sarcoma types and 21 bone sarcoma types. conclusions: Altogether, the incidence of ultra‐rare sarcomas accounts for roughly 20% of all soft tissue and bone sarcomas. This confirms that the challenges inherent in ultra‐rare sarcomas affect large numbers of patients. The list of ultra‐rare sarcomas, defined as those sarcomas with an incidence ≤1 per 1,000,000, comprises 56 soft tissue sarcoma and 21 bone sarcoma types. The incidence of ultra‐rare sarcomas accounts for roughly 20% of all soft tissue and bone sarcomas, confirming that challenges inherent to ultra‐rare sarcomas affect large numbers of patients. [ABSTRACT FROM AUTHOR]

Purpose: Exercise and physical activity (hereafter, collectively referred to as PA) preferences and benefits are becoming increasingly well characterised in cancer survivors, yet evidence from adolescent and young adult cancer survivors (AYAs) is scant. We describe the overall PA behaviour and support preferences of AYAs and explore subgroup differences to inform AYA-specific research and support. Methods: AYAs diagnosed with cancer between the ages of 18–39 years, irrespective of current age, were approached in clinic at a large cancer centre for this cross-sectional survey that assessed self-reported demographics, medical history, PA behaviour and PA support preferences. Results: A total of 318 AYAs completed the survey. Approximately 40% of AYAs were not meeting PA guidelines, and only 5% reported engagement with cancer PA support services. Most AYAs wanted PA support (78%), to increase PA levels (70%), and were interested in engaging in PA interventions that were individually supervised (82%), home-based (79%), performed ≥ 3 days/week (75%) and for ≥ 30 minutes/session (78%), offered following treatment (63%), restricted by age (63%), and involved strength (83%), walking (78%), and flexibility (75%) exercise. PA preferences most often differed according to sex, treatment status, current PA behaviour and PA support setting. Conclusion: AYAs have a great capacity and interest in specific types of PA support. Poor engagement with existing PA support services highlights the need for further AYA-specific research. Better understanding of AYAs' unique PA behaviour and support preferences can inform the development of urgently needed research and support services for this understudied and rapidly growing population. [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: Adolescents and young adults (AYA) with cancer are increasingly using the internet and social media (SM) for cancer-related information. AYA face specific challenges and thus require tailored resources that meet their needs. We describe the internet and SM preferences of AYA related to their cancer information seeking behaviors and their preferences for a future resource compared to middle-aged adults (MAA).Methods: Cancer patients completed a cross-sectional survey related to their internet and SM usage, cancer information, and preferences for future resources. Chi-square tests were used to compare AYA and MAA.Results: The mean (±SD) age in the AYA group was 30±6.1 years (n = 129); in MAA 55±6.7 years (n = 157). In general, AYA preferred internet sites over SM platforms for cancer-related information and prefer a website platform over a SM platform for a new resource. Few AYA were aware of hospital-based AYA-specific resources. MAA were less likely to use SM compared with AYA (13% vs 4%, p = 0.01); however, websites and SM platforms that were used were similar between the 2 groups. Participants endorsed having already researched certain topics - yet, these were also those desired in a new resource. Compared to MAA, AYA sought more information on diet/nutrition, physical activity, exercise/fitness, fertility, sexual health, and body image (all p values < 0.05).Conclusion: AYA and MAA use similar resources on the internet and SM, but AYA sought information related to specific needs. Development of future resources should focus on an internet-based platform rather than a SM platform, coupled with promoting awareness of the resource. [ABSTRACT FROM AUTHOR]

PURPOSE: Participation in cancer clinical trials (CCTs) for adolescents and young adults (AYAs) remains the lowest of any patient group with cancer. Little is known about the personal barriers to AYA accrual. The aim of this study was to explore AYA attitudes that influence CCT participation. METHODS: A mixed-methods approach was used. AYAs and non-AYAs (≥ 40 years) completed the Cancer Treatment subscale of the Attitudes Toward Cancer Trials Scales and 9 supplementary questions formed from interview analysis. Differences between AYA and non-AYA cohorts were analyzed using the Mann-Whitney U test, and logistic regression models were constructed to evaluate the effect of demographics on perceptions of CCTs. RESULTS: Surveys were distributed to 61 AYAs (median age, 29 years; range, 17-39 years) and 74 non-AYAs (median age, 55 years; range, 40-88 years). Compared with non-AYAs, AYAs perceived CCTs to be unsafe/more difficult (Personal Barrier/Safety domain; P =.01). There were no differences based on age in other domains. AYAs were also more concerned with CCT interference in their long-term goals (P =.04). Multivariable ordered logistic regression identified increased personal barriers in the Personal Barrier/Safety domain for AYAs (P =.01), in patients with English as a second language (ESL; P <.01), and in patients previously not offered a clinical trial (P =.03). Long-term goals were identified as a barrier in particular tumor types (P =.01) and in patients with ESL (P <.01), with a trend identified in AYAs (P =.12). CONCLUSION: Age-related differences in attitudes toward CCTs suggest that tailored approaches to CCT accrual are warranted. Patient-centered delivery of information regarding CCTs, particularly in patients with ESL and who are trial naïve, may improve accrual. [ABSTRACT FROM AUTHOR]

PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA. [ABSTRACT FROM AUTHOR]

Background: Adolescent and young adults (AYA) enrolment rates into cancer clinical trials (CCT) are the lowest of any age group globally. As AYA have distinct biological, psychosocial and relational needs, we aimed to explore any unique factors influencing their CCT decision-making process, including AYA-specific perceptions or attitudes towards CCT.Methods: Qualitative interpretive descriptive methodology was used to explore AYA perceptions and decision-making related to CCT. An analytic approach conducive to inductive imagining and exploratory questioning was used in order to generate insights and interpret data.Results: A total of 21 AYA were interviewed (median age: 31 (18-39)). Twelve (57%) participants had previously been approached to participate in CCT. Major themes influencing trial enrolment decisions were: 1) severity of illness/urgency for new treatment 2) side effect profile of investigational drug in the short and long term (e.g., impact on future quality of life) 3) who approached patient for trial participation (oncologist vs. other) 4) additional information found on-line about the trial and investigators, and 5) family, friends and peer group opinion regarding the CCT.Conclusions: Several psychosocial and relational factors were identified as influencing AYA CCT decisions, some of which are unique to this demographic. Specific strategies to address barriers to CCT and enable supportive decision-making include: 1) involving family in decision-making and 2) helping AYA appreciate short- and long-term implications of trial participation. Finally, exploring social networking and general education about CCT that AYA can independently access may increase participation. [ABSTRACT FROM AUTHOR]

Increasing accessibility of fertility preservation (FP) options has permitted women to retain fertility following anticancer therapies. Several published guidelines have made recommendations for FP however their implementation into practice is currently unknown. In this review, we aim to provide oncology clinicians practical information about FP options for post-pubescent female cancer patients and recommendations for care delivery in order to answer preliminary questions and help triage whether FP referral is appropriate. Herein, we present a resource for oncology providers to guide them with FP discussions. Key points that are discussed in this critical review include: i) All cancer patients beginning a new plan of care should be informed of potential fertility risk. ii) If a woman requests further information on FP interventions, referral to a FP clinic should be made. iii) Given the evolving technologies in this area, patients should be informed of those which are proven and unproven, with oocyte and embryo preservation recognized as standard practice. iv) Random start (independent of menstrual cycle day) techniques are available to minimize oncologic treatment delays. v) Specific protocols for ovarian stimulation may be center-specific. vi) There is unlikely an increased cancer recurrence risk as a result of stimulation protocols in women with hormone-sensitive cancers. vii) Lastly, given the absence of consensus in the literature, routine use of GnRH analogs is not recommended for all cancer patients, however may be considered in select cases, such as high-risk women in whom definitive FP is not possible or feasible. [ABSTRACT FROM AUTHOR]

Purpose: Minimal data exist regarding documentation of therapy-associated infertility risk (IR) and fertility preservation (FP) options during the initial oncology consultation prior to systemic therapy. This study investigated factors affecting IR/FP documentation and assessed the effect of implementation of an Adolescent and Young Adult (AYA) program on documentation rates.Methods: A retrospective review of charts of patients receiving gonadotoxic therapy was undertaken for documentation of IR/FP pre- and post-implementation of an AYA program. Change in documentation rates was assessed using univariate and multiple logistic regression.Results: A total of 173 charts were reviewed. On univariate analysis, IR/FP documentation was less likely if patients had metastatic disease (P < 0.01, P < 0.01), by tumor type (P < 0.01, P < 0.01), received less intensive chemotherapy (P = 0.03, P = 0.06), were older (P = 0.14, P < 0.01), had more children (P < 0.01, P < 0.01), or lacked AYA program involvement (P < 0.01, P < 0.01). FP discussion was more common in males (P = 0.02). On multivariable analysis, more children (P = 0.01, P = 0.03), older age (P < 0.01, P < 0.01), tumor type (P < 0.01, P = 0.01), stage (P = 0.02, NS), relationship (P = 0.03, NS), and lack of AYA involvement (P < 0.01, P < 0.01) were associated with lower rates of IR/FP documentation. Following AYA program implementation, IR/FP rates increased from 56% (CI 46-65%) to 85% (CI 74-92%, P < 0.01) and 54% (CI 45-64%) to 86% (CI 75-93%, P < 0.01), respectively. The effect of AYA program implementation on IR/FP documentation was most noticeable in leukemia, lymphoma, and breast groups (P < 0.01).Conclusions: Implementing an AYA consultation service at an adult cancer institution had a positive effect on the rates of IR/FP documentation. Specific programming can improve service delivery to AYA cancer patients, and fertility counseling should be integrated for patients undergoing gonadotoxic therapy. [ABSTRACT FROM AUTHOR]

Study Objective Alkylating agents are implicated in premature ovarian insufficiency. To optimize counseling regarding future ovarian function in survivors of adolescent cancer, we describe anti-Müllerian hormone (AMH) levels in female adolescents at diagnosis, during, and shortly after completion of chemotherapy. Design, Setting, Participants, Interventions, and Main Outcome Measures This was a prospective single-institution study. Participants were a mixed population of newly diagnosed postmenarchal female adolescents with malignancy. AMH was performed at diagnosis (T1), 6 months from diagnosis (T2), at end of therapy or 12 months [T3, whichever came first], 1 year after the end of therapy or 24 months from diagnosis [T4, whichever came first], and 18 months from the time of diagnosis (T5). All patients had baseline pelvic ultrasound examinations. Presence of menses and hot flashes were recorded at each time point. Results Sixteen participants with a median age at diagnosis of 14.3 years (range 12-17 years) were followed for 18.2 months (range, 14-24 months). Oncology diagnoses included leukemia, lymphoma, and sarcoma. Ten patients (62.5%) received alkylating agents with a median cumulative dose of 3041 mg/m 2 (range, 2639-6478 mg/m 2 ) of cyclophosphamide. Almost half (n = 7; 44%) experienced amenorrhea during treatment with resumption of menses in 6 of 7 patients (85%). Fifteen of 16 (94%) participants showed a decline in mean AMH levels by 6 months (T2) from diagnosis (15.8 IU/mL at T1 vs 6.5 IU/mL at T2; P = .003) and 12 of 15 (80%) showed at least some recovery of AMH (mean AMH at T4 = 13.2 IU/mL compared with 6.5 IU/mL at T2; P = .02). There was no difference in the mean decline nor recovery of AMH in those who did, vs did not receive cyclophosphamide. Conclusion To our knowledge, this is the largest series to date in adolescents showing that AMH is uniformly suppressed during cancer therapy and short-term recovery occurs in just more than half of the patients by 18-24 months. The contribution of short-term AMH measurements in predicting long-term ovarian function remains to be defined. Long-term follow-up with serial AMH levels is required to help predict those at risk for premature ovarian insufficiency. [ABSTRACT FROM AUTHOR]

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1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced access to specialized palliative care A high proportion of adolescents and young adults (AYAs) with cancer (ages 15-39 years) receive high-intensity (HI) medical care at the end of life (EOL). We have previously shown that palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized or general PC (SPC, GPC) is unknown. To evaluate the prevalence and predictors of SPC in AYAs with cancer and to evaluate the impact of SPC versus GPC on the intensity of EOL care for AYAs. A decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada was assembled from registries and linked to population-based healthcare data. Based on prior studies, the primary composite measure HI-EOL care included any of intravenous chemotherapy <14 days from death, >1 ED visit, and >1 hospitalization or ICU admission <30 days from death. SPC and GPC were defined via previously validated algorithms based on physician billing codes (SPC if practice consisted of ≥50% PC-specific billing codes and GPC if PC-specific billing codes were between 10% and 50%). Of 7,122 AYAs, 2,140 (30%) received SPC and 942 (13.2%) received GPC. AYAs with hematologic malignancies, male AYAs, and rural AYAs were least likely to have access to SPC. No PC involvement compared to GPC was associated with higher odds of receiving HI-EOL care (OR 1.5; 95% CI, 1.3-1.8; P <.001). However, SPC was associated with the lowest risk of HI-EOL care (OR vs GPC 0.8; 95% CI, 0.7-0.9; P = 0.007). SPC was also associated with decreased odds of ICU admission compared with GPC (OR 0.7; 95% CI, 0.5-0.9; P = 0.006). SPC is associated with a lower risk of HI-EOL care in AYAs with cancer as compared to GPC. However, access to SPC remains a challenge. Our study supports the widespread provision of SPC to AYAs with cancer. [ABSTRACT FROM AUTHOR]

Adolescents and young adults (AYAs) represent an overlooked population in cancer survivorship care. Identifying the needs of AYAs can guide the development of tailored programs for this population. We conducted a cross-sectional descriptive analysis to identify biopsychosocial factors associated with AYA post-treatment supportive care needs and unmet needs using data obtained from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces. The analysis focused on data from n = 530 AYAs between the ages of 18 and 34 who had undergone treatment within the past 5 years. Respondents reported a median of two moderate to big (MTB) physical needs (out of 9) and one unmet physical need, two MTB emotional needs (out of 6) with two unmet MTB emotional needs, and one (out of 5) practical need reported and one unmet MTB practical need. We found some common associations across supportive care domains. Income (lower) and more complex treatment were associated with high needs and unmet needs across the three domains. Respondents with a family doctor who was "very involved" in their cancer care had a lower number of unmet physical and emotional needs. Identifying those at risk of supportive care needs and developing tailored pathways in which they are proactively connected with tailored and appropriate resources and programs may help to reduce the number of unmet needs and improve cancer survivors' quality of life. [ABSTRACT FROM AUTHOR]