Adolescents And Young Adults Cancer Care Research Articles

Defining Practice Capacity for Cancer Care Delivery to Adolescents and Young Adults in the Community Setting: 2022 Landscape Assessment Results.

Background: Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. Methods: NCORP practices completed a cross-sectional Landscape Assessment to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. Results: We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (n = 20), (2) AYAs comprised ≥5% of annual cancer cases (n = 55), or (3) the practice treated ≥50 AYA cancer cases annually (n = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. Conclusion: Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development.

Social Determinants of Health Impacting the Experience of Young Adults With Cancer at a Single Community Urban Hospital: A Retrospective Cohort Study.

Adolescent and young adult (AYA) cancer patients receive palliative medicine consultation at a late stage and face diagnostic delays. Failure to address social determinants of health (SDOH) and AYA-specific needs can adversely impact patient experience. This retrospective observational cohort study used data from chart review to assess the frequency of SDOH impacting AYA patients and setting of initial diagnosis at a US urban safety-net hospital. The association of SDOH variables with delays in treatment, loss of follow-up, and no-shows was tested using Chi-square and t-tests. One hundred seventy five patient charts were reviewed. Sixty-two percent were diagnosed in acute care settings. Substance use disorders, financial, employment, and insurance issues were associated with delayed treatment, with weak to moderate effect sizes. Mental health diagnoses, substance use disorder, homelessness, and financial burdens were associated with patient no-shows, with moderate to large effect sizes. Twenty-five percent of patients received palliative medicine consultation; 70% of these occurred at end of life. This study demonstrates the impact of SDOH on AYA cancer care and the need for policy allowing for intervention on SDOH.

Grit and Health-Related Quality of Life in Adolescents and Young Adults with Cancer: Mediating Role of Health Self-Efficacy and Treatment Adherence.

Challenges with health-related quality of life (HRQOL) are common among adolescents and young adults (AYA) with cancer. Literature on HRQOL has largely been focused on individual deficits, rather than individual strengths. The present study investigated the relations between a strengths-based concept called grit (i.e., perseverance and passion for long-term goals), self-management (i.e., health self-efficacy and adherence), and HRQOL among AYA with cancer. Sixty-seven AYA receiving cancer treatment (Mage=17.1; 50.7% female; 25.4% Black, Hispanic, Asian, or a race other than white) and their caregivers (73.0% mothers) completed a semistructured, validated interview about adherence. AYA also completed self-report questionnaires about perceptions of their grit, health self-efficacy, and HRQOL. After controlling for sex, health self-efficacy (i.e., a cognitive self-management variable) mediated the relation between grit and HRQOL (95% confidence interval = .74-6.52). When testing adherence to medications, diet, or physical activity as mediators of the relation between grit and HRQOL, mediation models were non-significant. Among AYA with cancer, this study identified grit as an individual strength associated with more positive self-management beliefs, which in turn, related to better HRQOL. This adds to a growing body of literature supporting the need for resiliency-oriented, strengths-based approaches to AYA HRQOL research. Future directions include exploring the role of caregiver grit in relation to AYA cancer self-management, given that caregivers have demonstrated a high degree of involvement in AYA cancer care.

Challenging Outlook of Caring for Adolescents and Young Adults With Cancer in Brazil: Results of a Nationwide Survey.

The global burden of cancer in adolescents and young adults (AYAs) emerges as a major public health issue, in which remarkable challenges and unmet needs are evident. Because of sociodemographic inequalities, initiatives to change this scenario need to be expanded globally, particularly to low-middle-income countries (LMICs). This study aimed to gain information about the standards of AYA cancer care in Brazil from the physician's perspective. Physicians involved in AYA cancer care were invited to answer a national online survey. The questions covered several aspects from health care's demographics to specialized services availability, such as fertility and genetic counseling. The availability of a specialized AYA cancer care facility was the primary study end point, and the findings were stratified by region and treatment setting (public v private). Among the physicians who responded (N = 249), 90% reported no access to a specialized AYA service. Only 20% had access to a fertility specialist, and 30% to a survivorship program in their institutions. Even external referrals to medical specialties were challenging, with 24% of the physicians reporting challenges. Despite the potential cardiotoxicity related to treatments, 43% of the respondents reported to refer patients for cardio-oncologists hardly ever. Furthermore, 36% of physicians had never enrolled AYA patients into clinical trials and 42% had never ordered a genetic test. Lack of specialized human resources was particularly evident in Northern Brazil, and delays in cancer diagnoses were frequent. This first study addresses standards of AYA cancer care across Brazil. Importantly, the data disclose significant infrastructural gaps, implying that major investments in training and infrastructure are urgently needed. These data may mirror other LMICs reality.

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

Guidance to Support the Implementation of Specialized Adolescent and Young Adult Cancer Care: A Qualitative Analysis of Cancer Programs.

The nearly 90,000 adolescents and young adults (AYAs) diagnosed with cancer in the United States yearly have tended to occupy a no-man's land between medical and pediatric oncology, often reporting that existing models of care are misaligned with their needs and preferences. Although guidelines for optimal AYA cancer care are increasingly available, the implementation of such standards has been varied. This may be in part due to a lack of guidance for implementing specialized AYA care. In this study, we leveraged an implementation science framework to identify barriers and generate practical guidance to inform the implementation of specialized AYA cancer care. We conducted semistructured qualitative interviews, guided by the Consolidated Framework for Implementation Research, with AYA care stakeholders (N = 32 from 14 cancer programs). Our multidisciplinary research team analyzed interview transcriptions using a template analysis approach and gleaned from interviews practical guidance for implementing specialized AYA care. Participants reported barriers to implementing specialized AYA care across all five Consolidated Framework for Implementation Research domains: (1) intervention characteristics (eg, costs), (2) inner setting (eg, difficulties in collaborating between pediatric and medical oncology), (3) outer setting (eg, patient-level barriers to participating in AYA services), (4) individual characteristics (eg, attitudes about AYA oncology), and (5) process (eg, lack of metrics for program evaluation). They also shared practical guidance for addressing these barriers. Emerging guidance on the core elements of AYA cancer care must be matched with guidance to support the implementation of specialized AYA care. This study contributes to the body of evidence available to inform future implementation efforts.

Cancer-Peer Connection in the Context of Adolescent and Young Adult Cancer: A Qualitative Exploration.

Purpose: This qualitative study examined experiences and attitudes related to cancer-peer interactions among adolescent and young adult (AYA) cancer survivors. Methods: Twenty-six survivors, aged 16-24 years who were diagnosed with cancer between the ages of 14 and 18, completed one-on-one semistructured interviews as part of a larger study. Interviews were coded and analyzed using an iterative consensus and data-driven approach. Results: The data for this study revealed three main themes related to cancer peers, including the unique aspects of shared illness experience (i.e., personalizing of support from lived experience, inspiration from upward comparisons, space to be scared and to joke about cancer), benefits of providing support to other patients/survivors (i.e., giving back, healing after cancer, and incorporating cancer into life as a survivor), and considerations and concerns when connecting with cancer peers (i.e., exposure to adverse outcomes, "ignorance is bliss": blocking cancer out, guilt and cancer imposter syndrome). Conclusion: Study findings demonstrate the importance of cancer-peer connection and support in AYA cancer care, both during treatment and in survivorship. Future research should explore the ways in which peer-to-peer support programs could be tailored to best serve the AYA population in the context of cancer care.

Drivers of COVID-19 Vaccine Intent Among Survivors of Adolescent and Young Adult Cancer: a Mixed Method Study.

BackgroundSurvivors of adolescent and young adult (AYA) cancer are susceptible to severe COVID-19 outcomes due to their cancer history. Drivers of COVID-19 vaccine hesitancy and willingness are largely unexplored among AYA cancer survivors.MethodsWe surveyed survivors of AYA cancer from October 2020–February 2021 who received services through an AYA cancer care program. Survey measures included vaccine hesitancy on a five-point Likert scale and an open-ended question on vaccine intent. Open-ended responses were content analyzed through two cycles of structured coding. Quantitative vaccine intent and qualitative drivers of intent were integrated during data analysis.ResultsOf participants who responded to the open-ended vaccine intent question (N = 300), 39.0% reported COVID-19 vaccine hesitancy. Qualitative content analysis resulted in N = 517 codes and seven content categories. The most common content category associated with hesitancy included COVID-19 vaccine development, approval, and efficacy (34.5%; p value ≤ 0.001), as well as content areas including presence of misinformation about COVID-19 in the response (4.8%; p value = 0.04), the desire for more information about COVID-19/COVID-19 vaccine (6.0%; p value ≤ 0.001), and reference to political influence on participants’ intent to get the vaccine (2.5%; p value = 0.005). The most common category associated with vaccine willingness was personal perceptions of COVID-19 vaccination including protecting oneself and others (36.6% of codes; p value ≤ 0.001), followed by pro-vaccine beliefs (8.3%; p value ≤ 0.001) and trust in science (3.9%; p value ≤ 0.001).ConclusionsCommon drivers of COVID-19 vaccine hesitancy among survivors of AYA cancer include concern about vaccine side effects and approval process, and misinformation. Cancer survivors COVID-19 vaccine uptake could be improved by focusing communication on drivers of willingness, motivational interviewing, and physician recommendations.

Adolescent and young adult cancers in India–Findings from the National Cancer Registry Programme

BackgroundThe adolescent and young adult (AYA) age group is a bridge between pediatric and adult age groups. The present study describes the epidemiology of cancers in the AYA age group in India. MethodsThe data of primary site cancers in the age group of 15–39 years from the 28 Population Based Cancer Registries (PBCRs') and 58 Hospital Based Cancer Registries under the National Cancer Registry Programme for the reporting year 2012–2016 was analysed. ResultsThe median age adjusted incidence rate (AAR) was 22.2 per 100,000 among males and 29.2 per 100,000 among females. The age-specific incidence rate increased with increasing age in both genders with the highest recorded numbers in the 35–39 age group. The proportion of myeloid leukaemia and non-Hodgkin's lymphoma was highest in the 15–24 age group. Cancers of the breast, thyroid, mouth and tongue constituted the leading sites between 30 and 39 years. There was a significant increase in the incidence among AYA males (APC=0.9) between 1985 and 2015, while a decline in incidence was observed for females, which was not significant (APC=−0.2). The majority of patients had locoregional spread of cancer at the time of diagnosis. The projected number of cancer cases in both genders are expected to increase to 178,617 in 2025. ConclusionCancers in the AYA population are a concern in India. Since AYA oncology appears to be evolving in India, a robust health care system and suitable AYA cancer care policies and programmes are strongly needed to improve disease outcomes and survival.

Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15-39): A Qualitative Study.

Simple SummaryAdolescents and young adults (AYAs) are a unique population: they are a diverse group between the ages of 15–39 years with distinct needs and experience numerous developmental milestones during this age range. Notably, AYAs have faced worse outcomes in cancer care, both with shorter survival and worse quality of life compared to children and older adults. Understanding AYAs’ psychosocial, communication and informational needs is crucial to addressing this disparity and improving cancer care delivery. By hearing directly from AYAs, we are able to capture nuances of their experiences and provide clinical recommendations to healthcare providers involved in the care of AYAs with cancer. This study specifically interviewed AYAs with cancer to understand their perspectives, identify needs and to develop recommendations for cancer care delivery and accommodations across the cancer experience.Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.

Differences in the approaches of cancer specialists toward adolescent and young adult cancer care.

This study investigated the medical care of adolescent and young adult (AYA) cancer patients and compared approaches toward AYA cancer care by pediatric and adult cancer specialists. An Internet survey was conducted among 1,305 specialists (192 pediatric and 1,109 adult) in 2016. The rate of awareness of the term "AYA" was lower for adult specialists than for pediatric specialists. The departments that are responsible for caring for AYA cancer patients change when they reach 20 years of age. For the treatment of AYA patients, both pediatric and adult specialists preferred a multidisciplinary team as a top priority issue. A special ward or hospital rooms for AYA was required mostly for AYA patients under 24, and the needs for special wards or rooms for AYA was higher in pediatric specialists than in adult specialists. However, for AYA patients over 25, about 60% of adult specialists and 35% of pediatric specialists believed that no special care was required. As for desirable follow-up protocols for pediatric cancer AYA survivors, half of the specialists considered that they should be conducted mainly by pediatric specialists in cooperation with adult specialists, and 30% to 40% of the specialists considered that transition to the corresponding adult medicine department would be preferable. There were obvious differences in medical care and support for AYA cancer patients according to their age, particularly under the age of 20 or 24, and according to whether the onset of disease occurred during the AYA period or whether it was secondary to pediatric cancers. For each aspect, appropriate programs would require close cooperation between pediatric and adult specialists.

Trainings needs of allied health professionals caring for sexual and gender minority adolescents and young adults with cancer: A qualitative analysis.

e18532 Background: Little is known about the training needs of allied health professionals who provide reproductive health counseling and other support services to sexual and gender minority (SGM) adolescent and young adult (AYA) people with cancer. Methods: A 28-item electronic survey with 4 qualitative items was distributed to 601 allied health professionals who had participated in a training focused on reproductive health needs in AYA people with cancer. Open-ended questions invited respondents to describe personal experiences, reservations, and suggestions for improving SGM AYA cancer care. Using an interpretive description methodology, two investigators independently analyzed qualitative survey responses noting thematic saturation. Together, they refined themes, resolving disagreements with consensus. Interrater reliability was 88%. Results: 321 people participated in the survey and 190 answered open-ended questions. Themes included: 1) an ecosystem exists around patients’ interactions with clinicians and institutions; 2) institutional and individual assumptions result in stigmatization of SGM AYA people with cancer; 3) accommodating patients and providing clinicians with relevant education and experiences are initial steps to decrease stigma; and 4) improving the care for SGM AYA people with cancer may require transformative approaches that incorporate intersectional frameworks and challenge current systems. Conclusions: Improving the quality of care for SGM AYA people with cancer will require systemic and institutional change as well as educational interventions.

Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology.

Purpose: Adolescents and young adults (AYA) with cancer present a unique challenge to health care institutions. Their cancer diagnosis and treatment have a profound impact upon their health and well-being. Despite the various support services aimed at improving their quality of life, their needs and preferences are often underestimated or misjudged. Recent studies show that patients are empowered by the knowledge and support they receive online. Given the extensive use of social media among AYA, we aim to identify promises, challenges, and recommendations for integrating these platforms in AYA cancer care. Methodology: We systematically searched seven databases systematically: Scopus, PubMed, PsycInfo, Web of Science, CINAHL, SocINDEX, and Media. We placed no restriction on the type of methodology used in the studies. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses was used to frame the research. Results: Many studies argued that health care professionals need to integrate social media in their clinical practice to engage with patients' lifeworld. Social media were considered important allies in optimizing cancer care at all levels of support, ranging from information provision, treatment adherence, diet and exercise interventions, to professional, peer, and psychosocial self-care. Lack of research on the efficacy of social media in the context of psychosocial support was a commonly cited problem. A small number of publications paid attention to the inherent risks of promoting self-care online. Conclusion: Future studies should continue to pursue empirical research on the efficacy of online psychosocial care, while not neglecting the ethical challenges of social media research.

System Performance Indicators for Adolescent and Young Adult Cancer Care and Control: A Scoping Review.

Adolescents and young adults (AYAs) with cancer represent a unique group with unmet needs. Metrics and quality indicators are important for evaluating AYA cancer care. The purpose of this study is to describe the quality indicators in a Canadian context that are used for AYA (15-39 years of age) cancer care and control. The Arksey and O'Malley methodological framework was applied to undertake a scoping review of the peer-reviewed and gray literature for indicators related to AYA cancer care and control. OVID Medline was searched from January 1995 until April 2018 for English language articles. Inquiries were made to AYA cancer organizations and a Google search conducted to identify unpublished material. Articles were included if they incorporated AYAs and contained cancer care indicators. Data were summarized at the article and indicator level. A total of 610 abstracts were reviewed. Eighty-nine full-text articles and reports were assessed for eligibility, with 19 included in analyses which identified 146 indicators or indicator concepts. Most of the indicators were specific to the AYA age group (65.8%) and dealt with the active care theme (57.5%), almost half focusing on guideline adherence and treatment (26.4%) and multidisciplinary/specialized care (20.7%). Notable deficits in indicators were in fertility, psychosocial care, and prevention. Important progress has been made internationally and within Canada on developing indicators for AYA cancer care and control. However, there is a lack of well-defined AYA-specific cancer care indicators developed through a consensus process.

Development of System Performance Indicators for Adolescent and Young Adult Cancer Care and Control in Canada

ObjectivesTo develop an expert-group, consensus-based list of system performance indicators to be used for monitoring, evaluating, and benchmarking progress for cancer care and control in adolescents and young adults (AYAs) in Canada. MethodsA national multidisciplinary panel of AYA oncology experts was convened; they prepared a literature review and undertook a brainstorming exercise to create a comprehensive list of indicators based on a previously defined framework for AYA cancer care and control in Canada. A modified Delphi process was then undertaken to cull the list based on 3 quick screen criteria. Three rounds of ranking were required. The fourth stage employed a face-to-face meeting, and the final stage utilized a survey to rank the indicators on the basis of importance and feasibility. ResultsNineteen participants contributed to the 5-stage process. From an initial list of 114 indicators, 14 were ultimately endorsed, representing 5 themes: active care, survivorship, psychosocial issues, palliative care, and research. The 5 highest ranked indicators were assessed as very to moderately feasible, with only a single indicator (clinical trial enrollment) in the top 5 assigned a least feasible ranking. ConclusionThe 14 indicators provide a starting point for the development of a standard set of metrics for AYA cancer care and control in Canada and have potential for international utility.

1666TiP - COMPRAYA: Dutch nationwide infrastructure for COMPRehensive health outcome and intervention research among patients with adolescent and young adult cancer

BackgroundCompared to children, Adolescent and Young Adult (AYA) cancer patients, diagnosed with cancer between 18-39 years old, more often suffer from delay in diagnosis and lack of centralization of care, age-specific expertise and structured follow-up. This group presents with a unique spectrum of cancers with distinctive tumor biology, cancer risk factors, and psychosocial developmental challenges. The potential burden of medical and psychosocial problems could result in compromised quality of life and reduced life expectancy. Given the differences, findings derived from childhood cancer patients cannot be extrapolated to AYA cancer patients. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, genetic and biological data) across institutions and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. Therefore, we will create a unique nationwide infrastructure (COMPRAYA) for research into the prevalence, predictive and prognostic markers and underlying mechanisms of early and late medical and psychosocial outcomes, and to facilitate the development and testing of (early) intervention strategies to improve these outcomes for patients (at risk). Trial designAn observational cohort of 1-year AYA cancer survivors (N=4000), recruited over 4 years, followed prospectively, will be established. Patients are asked to (1) complete validated patient-reported outcome measures; (2) donate a blood, hair, urine and stool sample; (3) consent for biobanking of tumor tissue and serial clinical data extraction from medical records and Netherlands Cancer Registry; (4) visit an outpatient clinic (vital and phenotypic parameters); (5) be approached for ancillary studies. The established Dutch AYA cancer care network forms an optimal collaborating environment. Next to the COMPRAYA research infrastructure, an online AYA platform will be created together with and for AYA cancer patients where age-specific information, support and interventions will become available. Legal entity responsible for the studyNetherlands Cancer Institute - Antoni van Leeuwenhoek Hospital. FundingKWF Kanker Bestrijding. DisclosureAll authors have declared no conflicts of interest.

Models of care for adolescent and young adult cancer programs.

This review draws on the experience of adolescent and young adult (AYA) cancer clinicians from Australia, the United States, and the United Kingdom to summarize common aspects of models of care implemented in their countries. The principles underpinning these models include patient- and family-focused care informed by an understanding of normal AYA development, enhancing existing adult or pediatric cancer services to meet the needs of AYA, and promoting collaboration between pediatric and adult oncologists. Common elements of AYA cancer care include establishing an AYA multidisciplinary team that integrates medical and psychosocial care, efforts to centralize complex care, providing access and equity for all AYA, promoting clinical trials, and helping facilitate transition to healthy survivorship. Several organizational approaches are described, noting that local program development depends on resources, infrastructure, and assessment of unmet needs within the region. The development of national networks provides opportunities for shared learning and approaches to evaluation.

Putting Adolescents and Young Adults in a Room Together: Launching an Adolescent and Young Adult Oncology Council.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

An analysis of the development of adolescent and young adult cancer care in the United Kingdom: A Foucauldian perspective

This paper analyses the development of the specialism of adolescent and young adult (AYA) cancer care via a Foucauldian lens to consider how knowledge and awareness have grown since questions were first raised about unmet needs of AYAs with cancer. The AYA specialism has gathered momentum over the last 30years in the United Kingdom (UK) and is fast gathering pace internationally. Fundamental to this process has been the combined contribution from nursing and other health professionals, researchers, policy-makers and philanthropists. From an initial process of problematisation, through a gradual growth in empirical knowledge and resultant shifts in health policy, a new nexus of expertise has emerged that enabled AYA cancer care to become recognised as distinct from either child or adult oncology. Different stakeholders contributed to the discourses that have underpinned this development-a process likely to continue as it expands further. This paper draws on examples from the growth of the AYA specialism, the emergence of new professional roles and a growth in research. It illustrates how the coalescing of multiple perspectives allowed new discourses and, ultimately, new practices to be established that now have global impact.

CN16 - Introducing cancer nurse led consultations to improve sexuality & fertility outcomes for adolescents and young adults (AYAs) with an hematological disease

Background: With improving survival rates among AYAs with cancer, sexuality and fertility are important quality of life (QoL) concerns before, during and after treatment. Healthcare providers aren’t always knowledgeable about infertility risks associated with prescribed therapies. Cancer nurses are often the first professionals to identify and address sexuality concerns. Different barriers are the reason of not addressing sexuality concerns and fertility preservation options prior treatment. It is crucial that AYAs are well informed prior treatment to support them in their decision-making about fertility preservation options. Methods: An Interdisciplinary team developed an evidence-based care pathway for Hodgkin's disease. Healthcare providers from different staffs shared knowledge, expertise and skills to have positive impact on young patients survivorship outcomes. Standard infertility counselling was included prior to treatment for AYAs and a nurse led consultation prior therapy gives the opportunity to discuss important topics such as sexuality. Results: Implementation a care pathway increased the awareness about discussing sexuality and fertility preservation options among all healthcare providers within the haematology department. Collaboration between fertility specialists, physicians and cancer nurses will improve reproductive outcomes in AYA cancer care. Systematic feedback after fertility preservation procedures is helping to reduce reproductive concerns. Discussing sexuality during a nurse led consultation results in a better understanding of the effects of the disease and treatment and will improve QoL. Conclusions: Cancer nurses have a key role in discussing sexual concerns. A cancer nurse led consultation through the whole treatment process allows patients the opportunity to discuss sexual issues and concerns. Knowing that they can have their questions answered, makes them feel more confident and comfortable during treatment. Multidisciplinary care pathways are needed to establish systems to ensure that fertility is adequately addressed and comprehensive fertility counselling is offered to all AYAs prior to therapy and during survivorship. Legal entity responsible for the study: University Hospital Ghent. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.