Adolescent Cancer Research Articles

Mapping models of care for children, adolescent and young adult cancer survivors: A scoping review.

e13793 Background: Young cancer survivors, with decades of life ahead, encounter substantial risks for treatment-related late effects. Achieving optimal outcomes requires a comprehensive multi-dimensional approach. This scoping review aimed to systematically map the evidence on models of survivorship care for Child (0-14) and Adolescent and Young Adult (AYA, 15-39) cancer survivors aligning with the Framework for Quality Cancer Survivorship. Methods: Conducted according to PRISMA extension for scoping reviews, this study systematically searched MEDLINE, CINAHL and Embase for English articles from Jan 2006 to Jan 2024. Inclusion criteria were studies describing patient and health service domain for Child and AYA cancer survivorship models of care. Dual processes were used for article screening, selection, and data extraction. A deductive analysis, using Content Analysis informed results, presented in a narrative synthesis. Results: Of the 5,298 records screened 38 described Child and 10 described AYA models of care. The majority were cohort and cross-sectional studies from the USA, Canada, and the UK representing 6,101 Child and 5,283 AYA cancer survivors. Across these diverse studies, a broad range of outcomes were identified with most domains of the Framework represented. No model of care described more domains than another. Across the 13 possible elements of care and outcomes, most (68%) reported on less than five of these. The domains most represented included elements of care rather than outcomes at the service level such as the clinic structure (52%), communication and decision making (52%) and patient/carer satisfaction (50%). At the patient level, quality of life outcomes and assessment and management of physical symptoms were represented in 40% of studies. There were few studies reporting on health promotion (23%), chronic conditions (13%), mortality and healthcare utilization (5% each) and none reported on costs. In terms of outcomes, oncologist long-term follow up care showed higher adherence to risk-based recommendations compared to primary care models in some studies. Other studies suggest a shared care model increases adherence and decrease lost to follow-up. At the service level, high satisfaction with care was common in all models. Overall, there was not enough to evidence to support one model over another in either Child or AYA survivorship care. Conclusions: Despite decades of research in survivorship care, there is not enough evidence about the effectiveness and efficiency of different models of care. No single model stands out as superior, and there are notable gaps in understanding the economic and value proposition of different models. Addressing these gaps is crucial for the future development, and provision of quality survivorship care tailored for this patient population.

Exploring sexual and reproductive health among adolescent and young adult patients with cancer: A patient-oriented qualitative study using novel, serial focus groups.

e23080 Background: While treatment advances for adolescent and young adult (AYA, ages 15 - 39) cancers are improving survival, there is a lack of information and support regarding impacts of AYA cancer on sexual and reproductive health (SRH) during and after treatment. Our study explored SRH experiences of AYA cancer patients using novel, serial focus groups. Methods: With online and in-person approaches, we recruited folks who: 1) Were diagnosed with cancer at age 15 – 39; 2) Reside in Canada; and 3) Are over 18. Participants were grouped into cohorts based on akin characteristics (e.g., sex, stage). Each cohort engaged in three focus groups, mimicking support groups, to foster community and trust. An interview guide was iteratively developed with patient research partners. We used framework analysis to identify recurring themes and patterns, offering full insight of participants’ SRH perspectives and experiences from deductive and inductive views. Results: We recruited 4 focus group cohorts, with 6–10 participants each (N = 24 females, 6 males), representing various cancer types (e.g., pelvic, hematologic) and stages (1–4). Cohorts had representation of transgender (n = 1) and gender diverse folks (n = 3), non-heterosexual sexual orientation (n = 11), and racial diversity (n = 9). We identified three themes describing participants’ experiences: 1) internally (“looking inwards”) – impact of AYA cancer on SRH; 2) externally (“looking outwards”) – impact of cancer on interpersonal relationships; and 3) role of the healthcare system. Internally, folks described complex impacts of AYA cancer on themselves, revealing shifting definitions, perspectives, expectations, and goals of SRH over time. Dynamic interplays of AYA cancer also surfaced, unveiling mental, physical, and financial health changes that positively or negatively impacted participants’ SRH and influenced short and long-term well-being. Externally, changes in romantic relationships and family planning underscored the complex interplay of societal pressures on SRH and reproductive choices. Regarding the healthcare system, findings highlight facilitators (i.e., self-advocacy, nurses, recent pregnancy, provider with similar identity, etc.) and barriers (i.e., gender, SRH stigma, age, fertility treatment costs, heteronormativity, SRH deprioritization, etc.) that influence access to appropriate and available SRH resources and support. Conclusions: SRH challenges have significant internal and external impacts among AYA cancer patients and their interpersonal relationships during and after treatment. By understanding their SRH experiences throughout their cancer care, providers and the healthcare system can identify opportunities to implement SRH care more effectively into the cancer care continuum, significantly improving health outcomes for AYA cancer patients.

Clinical practice guidelines for adolescent and young adult cancer: A literature review.

e13727 Background: Cancers among adolescents and young adults (AYA, aged 15-39) are rising in incidence, yet formal guidelines for diagnosis, treatment, and management of AYA-specific cancers are not widely known or disseminated. Practice patterns vary widely, contributing to a lack of improvement in outcomes for this underserved population. Clinicians and health systems have reported a need for additional guidance in care delivery for AYAs. Methods: We conducted a comprehensive literature review to identify clinical practice guidelines for cancer care delivery specific to AYAs published in PubMed or MEDLINE since 2010. MeSH and other key words were applied, using a search strategy guided by a health science librarian (EM). 795 papers were identified, with 690 excluded based on title and abstract review. 105 papers underwent full text review, and 64 papers underwent complete data extraction. Using Covidence software, two team members independently reviewed articles at the data extraction phase, with disagreements resolved through discussion. Results: We identified 22 papers that met our inclusion criteria as clinical practice guidelines specific to AYA cancer care. Clinical focus included breast cancer (4), sarcoma (4), brain tumors (2), gynecologic malignancies (2), acute lymphoblastic leukemia (1), colorectal cancer (1), NUT carcinoma (1), and proton therapy (1). Six papers covered general principles of caring for AYAs, regardless of cancer diagnosis. Key themes across guidelines included the importance of fertility preservation and psychosocial support, multidisciplinary care provided at specialized centers, and consideration of long-term toxicities of treatment. Conclusions: Clinical practice guidelines exist to inform clinicians and health systems on best practices for caring for AYAs with cancer, a growing and underserved population. Further dissemination of these guidelines may assist with improving outcomes. Comprehensive summary of these and other AYA specific guidelines is forthcoming and may serve as a useful clinical reference. [Table: see text]

Pharmacogenomic studies of fertility outcomes in pediatric cancer survivors - A systematic review.

For the same age, sex, and dosage, there can be significant variation in fertility outcomes in childhood cancer survivors. Genetics may explain this variation. This study aims to: (i) review the genetic contributions to infertility, (ii) search for pharmacogenomic studies looking at interactions of cancer treatment, genetic predisposition and fertility-related outcomes. Systematic searches in MEDLINE Ovid, Embase Classic+Embase, and PubMed were conducted using the following selection criteria: (i) pediatric, adolescent, and young adult cancer survivors, below 25 years old at the time of diagnosis, (ii) fertility outcome measures after cancer therapy, (iii) genetic considerations. Studies were excluded if they were (i) conducted in animal models, (ii) were not published in English, (iii) editorial letters, (iv) theses. Articles were screened in Covidence by at least two independent reviewers, followed by data extraction and a risk of bias assessment using the Quality in Prognostic Studies tool. Eight articles were reviewed with a total of 29 genes. Outcome measures included sperm concentration, azoospermia, AMH levels, assessment of premature menopause, ever being pregnant or siring a pregnancy. Three studies included replication cohorts, which attempted replication of SNP findings for NPY2R, BRSK1, FANCI, CYP2C19, CYP3A4, and CYP2B6. Six studies were rated with a high risk of bias. Differing methods may explain a lack of replication, and small cohorts may have contributed to few significant findings. Larger, prospective longitudinal studies with an unbiased genome-wide focus will be important to replicate significant results, which can be applied clinically.

Prognostic factors of tongue cancer in children and adolescents: A SEER population-based study.

This study aims to analyze the clinicopathological characteristics and survival outcomes of tongue cancer in the pediatric population, a topic with limited existing data, using a population-based cohort. Pediatric patients diagnosed with tongue cancer from 1975 to 2018 were identified from the Surveillance, Epidemiology, and End Results (SEER) database. Survival rates were assessed using Kaplan-Meier analysis. Univariate survival analysis was conducted with the log-rank test, while multivariate analysis involved Cox proportional-hazards regression to identify factors influencing overall survival (OS). A predictive nomogram was developed based on Cox regression findings. In total, 97 pediatric patients with tongue cancer were identified, with a median age at diagnosis of 15 years (range: 1-19 years). Tumors were classified as squamous cell carcinoma (45.4%), rhabdomyosarcoma (RMS) (13.4%), and others (41.2%). Of the patients, squamous cell carcinoma was more common in older children, whereas rhabdomyosarcoma was more common in younger children. The Cox proportional hazard regression revealed that histology and surgery were significant independent predictors of overall survival. The chance of death increased with no surgery. Moreover, patients with squamous cell carcinoma or rhabdomyosarcoma have a poorer survival percentage than patients with other subtypes. Tongue cancer in children is rare and associated with poor survival outcomes. This study highlights the significance of tumor histology and surgical intervention in determining overall survival, offering valuable insights for clinical decision-making in pediatric tongue cancer.

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors

BackgroundHaving sufficient knowledge of cancer diagnosis, treatment and late effects in survivors of childhood, adolescent, and young adult (CAYA) cancer is important for effective self-management and optimising health outcomes. Therefore, in collaboration with different stakeholders, the PanCare PLAIN Information Group converted the PanCareFollowUp Recommendations for late effects surveillance into information summaries that are Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). MethodsThe PanCare PLAIN Information Group, comprising 21 stakeholders from seven European countries, collaborated to provide concise information for survivors and their families. The aim was to deliver PLAIN summaries that are clear and accessible for the majority of survivors, while providing links to additional sources of information. The PLAIN summaries were drafted by the PanCare PLAIN Information Group and subjected to two internal and one external consultation round, the latter involving experts, CAYA cancer survivors and parents/caregivers. ResultsIn total, 45 PLAIN summaries were developed, each corresponding to one of the PanCareFollowUp Recommendations for late effects surveillance. The summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care. ConclusionsThe PLAIN summaries are meant to increase knowledge in survivors and their families, while they may also inform healthcare professionals. Along with their translations, the PLAIN summaries will be made freely available on the PanCare website, with a link provided on the European Network of Youth Cancer Survivors information platform. In addition, they will become and integral part of the Survivorship Passport.

Prognosis of Second Primary Malignancies in Pediatric Acute Lymphoblastic Leukemia Survivors: A Multicenter Study by the Turkish Pediatric Hematology Society.

The improved survival rates of childhood cancers raise the long-term risk of second primary malignancy (SPM) in childhood and adolescent cancer survivors. The intensity of the treatment protocol used, the use of some groups of chemotherapeutics, and radiotherapy were found to be risk factors for the development of second primary malignancies (SPMs). Forty-one patients who developed acute myelocytic leukemia or any solid organ cancer within 25 years of follow-up, after completion of pediatric acute lymphoblastic leukemia (ALL) treatment, were included in the study. The mean duration of initial ALL diagnosis to SPM was 9.3 ± 6.1 years. The 3 most common SPMs were acute myelocytic leukemia, glial tumors, and thyroid cancer. Thirteen (81%) of 16 patients exposed to cranial irradiation had cancer related to the radiation field. In total 13/41 (32%) patients died, and the 5-year overall survival rate was 70 ± 8%. Patients older than 5 years old at ALL diagnosis had significantly worse overall survival than cases younger than 5 years old. In conclusion, children and adolescents who survive ALL have an increased risk of developing SPM compared with healthy populations, and physicians following these patients should screen for SPMs at regular intervals.

The pediatric approach to Hodgkin lymphoma

Hodgkin lymphoma (HL) occurs throughout the lifespan but is one of the most common cancers in adolescents and young adults (AYA; 15-39 years). HL has become a highly curable disease with survival rates surpassing 90%, including patients with high-risk and advanced stage disease. Unfortunately, intensive treatment carries a risk of short- and long-term toxicity. Given the decades pediatric HL survivors are expected to live after treatment, the pediatric approach to treatment has focused on improving the therapeutic index through response adapted treatment and more recently the incorporation of novel agents. The efforts of pediatric and medical oncologists in research and clinical trial development have long occurred in parallel, but recent efforts have laid the foundation for collaboration with the goal of standardizing AYA care and allowing earlier incorporation of novel therapy for younger patients. This review focuses on the evolution of the management of pediatric HL including epidemiology, biology, and approaches to upfront and salvage treatment regimens.

Protocol for the 'Supporting Young Cancer Survivors who Smoke' study (PRISM): Informing the development of a smoking cessation intervention for childhood, adolescent and young adult cancer survivors in England.

Childhood, adolescent and young adult (CAYA) cancer survivors are vulnerable to adverse late-effects. For CAYA cancer survivors, tobacco smoking is the most important preventable cause of ill-health and early death. Yet, effective strategies to support smoking cessation in this group are lacking. The PRISM study aims to undertake multi-method formative research to explore the need for, and if appropriate, inform the future development of an evidence-based and theory-informed tobacco smoking cessation intervention for CAYA cancer survivors. PRISM involves three phases of: 1) an environmental scan using multiple strategies to identify and examine a) smoking cessation interventions for CAYA cancer survivors that are published in the international literature and b) current smoking cessation services in England that may be available to, or tailorable to, CAYA cancer survivors; 2) a qualitative study involving semi-structured interviews with CAYA cancer survivors (aged 16-29 years and who are current or recent ex-smokers and/or current vapers) to explore their views and experiences of smoking, smoking cessation and vaping; and 3) stakeholder workshops with survivors, healthcare professionals and other stakeholders to consider the potential for a smoking cessation intervention for CAYA cancer survivors and what such an intervention would need to target and change. Findings will be disseminated to patient groups, healthcare professionals and researchers, through conference presentations, journal papers, plain English summaries and social media. PRISM will explore current delivery of, perceived need for, and barriers and facilitators to, smoking cessation advice and support to CAYA cancer survivors from the perspective of both survivors and healthcare professionals. A key strength of PRISM is the user involvement throughout the study and the additional exploration of survivors' views on vaping, a behaviour which often co-occurs with smoking. PRISM is the first step in the development of a person-centred, evidence- and theory-based smoking cessation intervention for CAYA cancer survivors who smoke, which if effective, will reduce morbidity and mortality in the CAYA cancer survivor population.

"God is going to help me get through this": spirituality perspectives from Hispanic adolescent and young adult cancer survivors.

Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

With 5-year survival rates > 85%, gaining insight into the long-term and late health-related conditions of cancer survivors diagnosed in adolescence and young adulthood is of utmost importance to improve their quantity and quality of survival. This study examined the prevalence of and factors associated with, patient-reported health-related conditions and their latency times among long-term adolescent and young adult (AYA) cancer survivors. AYA cancer survivors (5-20years after diagnosis) were identified by the population-based Netherlands Cancer Registry (NCR), and invited to participate in the SURVAYA questionnaire study. Participants reported the prevalence and date of diagnosis of health-related conditions. Clinical data were retrieved from the NCR. Three thousand seven hundred seventy-six AYA cancer survivors (response rate 33.4%) were included for analyses. More than half of the AYAs (58.5%) experienced health-related conditions after their cancer diagnosis, of whom 51.4% were diagnosed with two or more conditions. Participants reported conditions related to vision (15.0%), digestive system (15.0%), endocrine system (14.1%), cardiovascular system (11.7%), respiratory system (11.3%), urinary tract system (10.9%), depression (8.6%), hearing (7.4%), arthrosis (6.9%), secondary malignancy (6.4%), speech-, taste and smell (4.5%), and rheumatoid arthritis (2.1%). Time since diagnosis, tumor type, age at diagnosis, and educational level were most frequently associated with a health-related condition. A significant proportion of long-term AYA cancer survivors report having one or more health-related conditions. Future research should focus on better understanding the underlying mechanisms of, and risk factors for, these health-related conditions to support the development and implementation of risk-stratified survivorship care for AYA cancer survivors to further improve their outcomes. NCT05379387.

"Infertility Isn't a Choice!": Conversations on Twitter about the Financial Burden of Oncofertility Care.

This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (n = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.

Determinants of Decision Regret Regarding Fertility Preservation in Adolescent and Young Adult Cancer Survivors: A Systematic Review.

Given recent advances in cancer therapeutics, there is a growing population of adolescent and young adult (AYA) cancer survivors navigating the physical and psychological consequences of cancer treatment. Fertility preservation (FP) conversations are of increasing importance for these survivors. Decision regret (DR) is a measure of distress or remorse following a health care decision, and it is a useful tool to evaluate the impact of a treatment on quality of life. The aim of this systematic review is to culminate existing literature focused on determinants of FP DR among AYA cancer survivors and to propose future interventions to reduce DR among AYA cancer survivors. An electronic database search was performed using PubMed, Web of Science, and APA PsycINFO for articles published before December 2023 using the following search criteria: PubMed: "Fertility Preservation"[Mesh] AND decision regret, APA PsycINFO and Web of Science: Fertility Preservation AND decision regret. Articles were organized into five categories that emerged after initial review. Nineteen articles that focused on DR and FP in AYA cancer survivors aged ≤40 and ≥12 years were included. Article results were categorized into five categories pertaining to determinants of FP DR: Unmet Informational and Emotional Needs, Need for Developmentally Appropriate Conversations, Insufficiency of Provider Training, Quality and Timeliness of Fertility Preservation Discussions, and Societal Barriers. These results highlight the need for improved patient and provider education on FP, such as future longitudinal studies focused on standardization of FP-related protocols and the impact of their implementation on DR, especially for AYA cancer survivors.

The epidemiological, clinical, and pathological characteristics of differentiated thyroid cancer in children and adolescents

The epidemiological, clinical, and pathological characteristics of differentiated thyroid cancer in children and adolescents

Primary lung cancer in children and adolescents

PurposePrimary lung cancer is extremely rare in children and adolescents. The aim of this study is to clarify clinical features and outcomes of primary lung cancer in children and adolescents.MethodsYoung patients (aged ≤ 20 years) diagnosed as primary lung cancer between 2012 and 2023 were retrospective reviewed. According to radiological appearance of the nodules, they were divided into solid nodule (SN) group and ground glass opacity (GGO) group.ResultsA total of 74 patients were identified, with a median age at diagnosis of 18 years old (range: 11–20), including 7 patients in SN group and 67 patients in GGO group. In the GGO group, none of the nodules enlarged or changed during an average surveillance period of 10.8 months before surgery, except one. Wedge resection was the most common procedure (82.1%), followed by segmentectomy (16.4%) and lobectomy (1.5%). Histopathological analysis revealed that 64.2% of GGO nodules were adenocarcinoma in situ and minimally invasive adenocarcinomas, while the remaining 35.8% were invasive adenocarcinomas. Mutational analysis was performed in nine patients, with mutations identified in all cases. After a mean follow-up period of 1.73 ± 1.62 years, two patients in the SN group died due to multiple distant metastases, while all patients in the GGO group survived without recurrence. The overall survival (100%) of the GGO group was significantly higher than SN group (66.7%).ConclusionsPrimary lung cancer in children and adolescents are rare and histopathological heterogeneous. Persistent GGO nodules may indicate early-stage lung adenocarcinoma in children and adolescents.

Abstract PO4-17-10: Epidemiological Analysis and Overall Survival of Female Adolescent and Young Adults Breast Cancer in a Developing Middle Eastern Country Over 18 Years

Abstract Background: Breast cancer is the most common type of cancer among female adolescents and young adults (AYAs) aged 15-39 years at diagnosis. AYAs with breast cancer have worse prognosis and are more likely to present with unfavorable tumor biology. However, breast cancer in AYAs is still poorly reported in middle eastern populations. Methodology: This is a retrospective cohort study which examined female AYAs patients aged 15 to 39 years at the time of diagnosis who were diagnosed with breast cancer between 2000 and 2018, using data from the Jordan Cancer Registry. Kaplan-Meier analysis was performed to assess the 5-year overall survival of the patients over time. Results: A total of 3831 Female AYAs were diagnosed with breast cancer in Jordan between 2000 and 2018 with a median age of 34.2 (IQR 30.9-38.3) years. 43.2% of female AYAs breast cancer cases were right breast cancer, whereas left breast cancer occurred in 47.4% of cases, and only 2.15% of cases were bilateral breast cancer. Meanwhile, 7.31% of cases did not have a reported laterality in the registry records. Most female AYAs patients had high grade breast cancer with grade III breast cancer being the most common (N=1349, 35.2%) followed by grade II breast cancer (N=1093, 28.5%). Among this female AYA cohort, 2208 (59.3%) were treated with surgical intervention, 1621 (43.5%) patients were given chemotherapy, 1220 (32.7%) patients had radiotherapy, 265 (7.15%) patients had hormonal therapy and only 47 (1.27%) were treated with immunotherapy. Among the entire studied cohort, 229 (5.98%) patients died during follow up period. The 5-year overall survival was 94% (95% CI 93.3% to 94.8%) Conclusion: Female AYAs breast cancer tends to have a predilection towards the left breast, but presents at a more advanced grade compared with other age groups in females. Citation Format: Ahmed Abdulelah, Zaid Abdulelah, Abdulrahman Alhajahjeh, Ahmad Ghazzawi, Layla El-Amayreh, Hikmat Abdel-Razeq. Epidemiological Analysis and Overall Survival of Female Adolescent and Young Adults Breast Cancer in a Developing Middle Eastern Country Over 18 Years [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-17-10.

Abstract PO4-18-10: Randomized controlled trial of Young, Empowered & Strong (YES), a web-based patient-reported symptom monitoring and self-management portal for adolescent and young adult (AYA) breast cancer (BC) survivors

Abstract Background: BC is the most common malignancy diagnosed in AYAs. AYAs develop more biologically aggressive BC and present at more advanced stages, necessitating more intensive therapy with curative intent. While acute physical sequelae often resolve following initial treatment, the long-term physical and psychosocial impact of BC on a survivor’s life may worsen or emerge in survivorship. This impact includes symptoms (e.g., sexual problems, anxiety, fatigue, stress, sleep issues, hot flashes) as well as concerns unique to, or accentuated by, being young (e.g., fertility, genetics, childrearing, educational/work attainment). With provider attention to these issues often sub-optimal, strategies that empower patients have the potential to improve their well-being. To engage and activate AYA BC survivors, we developed YES, a web-based portal that leverages electronic patient-reported outcomes (ePROs) to facilitate self-monitoring and management of symptoms/AYA concerns. In contrast to ePRO models dependent on clinician interaction, our approach emphasizes self-management of chronic survivorship concerns outside of the clinic environment. This model is grounded in the reality that most clinicians have limited bandwidth to address these needs and considers that AYAs can have competing demands (e.g., missing work, child-care) that may make accessing in-person support challenging. Methods: The YES study is a randomized controlled trial of the YES intervention vs. usual care. YES supports participants to 1) self-monitor needs/symptoms; and 2) provides a repository for information and resources on self-management of symptoms/AYA concerns. Eligibility criteria include: female, age 15-39 years at diagnosis, stage 0-III BC, within 3 years of diagnosis, no recurrent/second primary BC, no other malignancy since BC diagnosis, and English speaking. Participants randomized to the YES arm are prompted through a monthly text or email to complete an ePRO assessment regarding current symptoms/AYA concerns. For each symptom/concern endorsed, information/resources to address the symptom/concern is automatically provided via the YES portal. The portal is monitored, and providers are contacted if participants report severe distress or suicidality. YES also provides peer support via a chat room and self-support through a journaling platform in the portal. Participants in the usual care group are offered access to YES for up to 3 months at the end of their 9-month study participation. All participants complete a REDCap survey with validated measures of quality of life (QOL), symptoms, and other PROs at baseline, 3, 6, and 9 months after randomization and provide a dried blood spot specimen via a self-administration kit at baseline and 6 months. The primary study aim is to determine the efficacy of YES vs. usual care in improving life quality measured by the QOL in Adult Cancer Survivors [QLACS] scale at 6 months post-randomization. With a planned sample size of 360 participants, the study will have ≥90% power to detect a 6-point mean change (6 months vs. baseline) in the cancer-specific QLACS score between arms. Secondary outcomes include efficacy of YES in reducing symptoms/AYA concerns at 6 months and sustainability of the effects of YES at 9 months. Repeated measures regression will be used with link functions selected based on the type of outcome data analyzed. Exploratory aims will evaluate moderators and mediators of intervention efficacy and the effects of YES on inflammatory biomarkers. At study completion, a subset of 30 participants diverse in age, race, ethnicity, and gender identity are invited to participate in an interview to understand their survivorship preferences/concerns and to understand how the portal supported their self-management. The YES trial opened to enrollment in 9/2021. As of 6/2023, 245 participants are enrolled. Clinical Trials Information: NCT04906200 Citation Format: Shoshana Rosenberg, Yue Zheng, Dawn Hershman, Craig Snow, Kate Dibble, Magnolia Contreras, Noel Roma, Nabihah Tayob, Michelle Naughton, Ann Partridge. Randomized controlled trial of Young, Empowered & Strong (YES), a web-based patient-reported symptom monitoring and self-management portal for adolescent and young adult (AYA) breast cancer (BC) survivors [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-18-10.

The Development and Impact of AYA Can-Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to "AYA Can-Canadian Cancer Advocacy"), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a "patient ambassador program," and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.

Abstract PO1-11-10: Use of a standardized tool for the evaluation and treatment of cancer related cognitive impairment (chemo-brain) among breast cancer patients

Abstract There is a steep linear increase in patients surviving a cancer diagnosis. Clinical solutions that address the high prevalence of cancer-related treatment effects (CRTE) are urgently needed. A stark example of this need is the dearth of screening and treatment programs for cancer related cognitive impairment (CRCI) (colloquially called “chemo-brain”). Up to 75% of cancer patients report neurocognitive changes that leave patients unable to cope with the expectations of employers, colleagues, families, and friends. The prevalence of neurological disorders is 275% higher among adult cancer patients, when compared to an adult cancer-free population. For many adolescent and young adult cancer patients, the onset of CRCI occurs during "cognitive prime time"; a time when individuals are pursuing education, careers, and raising families. To address a gap in CRTE we have implemented a virtual multi-disciplinary intervention to measure and treat CRCI. Our CRCI intervention follows National Comprehensive Cancer Network and American Society of Clinical Oncology (ASCO) guidelines for CRCI. These guidelines indicate a multi-disciplinary approach with emphasis on increasing physical activity levels, cognitive-behavioral therapy, memory adaptive training, mood management, and sleep optimization. Our approach also follows recent ASCO guidelines for nutrition counseling. Our CRCI program utilizes medical oncologists, physician assistants, mental health therapists, registered dietitians, and occupational therapists. A nationally validated patient reported outcome (PRO) measurement, analysis, and reporting platform informs clinical treatment pathways, monitors patient progress, guides clinical decision making, and improves patient/provider communication. Using health status measures for CRCI, and following American Cancer Society and ASCO guidelines, patients are risk-stratified into three personalized cancer survivor care pathways: 1) low-complexity patients; 2) medium-complexity patients; and 3) high-complexity patients. Low-complexity patients baseline PROs score in the normal range, medium-complexity patients are those who score below the norm (moderate to large effect size difference from normal), and high-complexity patients are those who score well below the norm (greater than larger effect size difference from normal). Low-complexity patients are enrolled into a self-management and continuation of care program. Medium-complexity patients are enrolled into a shared care program. High-complexity patients are enrolled into an acute care program. All three clinical pathways include continued risk-factor vital-sign surveillance. Nearly 100% (99%) of patients who enroll in our primary cancer survivor care program complete our PRO baseline (N=80). From a convenient sample of breast cancer patients (N=42), provisional results of patient-specific segmentation analyses reveal a nearly perfect bell-shaped curve, with 51% of the population classified within the definition of medium-complexity and even split of outliers (high-complexity 24% and low-complexity 24%). Additionally, of all patients in our primary cancer survivor care program who completed at least three measurement time points for health status measures of cognitive impartment (N=38), 92% had a positive experience, 71% had a clinically significant improvement in cognitive health, 21% had a no change in cognitive status, and only 8% had a decline in cognitive health. If these data, and PRO implementation approach hold true, this program could be scaled to national and international cancer survivor population suffering from CRCI. Citation Format: John Librett, Mark Kosinski, Gregory Litton. Use of a standardized tool for the evaluation and treatment of cancer related cognitive impairment (chemo-brain) among breast cancer patients [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO1-11-10.