Young Adult Cancer Care Research Articles

1579P The Dutch national adolescent and young adult (AYA) cancer care network, a data driven learning healthcare system

1579P The Dutch national adolescent and young adult (AYA) cancer care network, a data driven learning healthcare system

Travel-time barriers to specialized cancer care for adolescents and young adults with acute lymphoblastic leukemia.

Prior studies demonstrate that 20%-50% of adolescents and young adults (age 15-39 years) with acute lymphoblastic leukemia (ALL) receive care at specialty cancer centers, yet a survival benefit has been observed for patients at these sites. Our objective was to identify patients at risk of severe geographic barriers to specialty cancer center-level care. We used data from the North American Association of Central Cancer Registries Cancer in North America database to identify adolescent and young adult ALL patients diagnosed between 2004 and 2016 across 43 US states. We calculated driving distance and travel time from counties where participants lived to the closest specialty cancer center sites. We then used multivariable logistic regression models to examine the relationship between sociodemographic characteristics of counties where adolescent and young adult ALL patients resided and the need to travel more than 1 hour to obtain care at a specialty cancer center. Among 11 813 adolescent and young adult ALL patients, 43.4% were aged 25-39 years, 65.5% were male, 32.9% were Hispanic, and 28.7% had public insurance. We found 23.6% of adolescent and young adult ALL patients from 60.8% of included US counties would be required to travel more than 1 hour one way to access a specialty cancer center. Multivariable models demonstrate that patients living in counties that are nonmetropolitan, with lower levels of educational attainment, with higher income inequality, with lower internet access, located in primary care physician shortage areas, and with fewer hospitals providing chemotherapy services are more likely to travel more than 1 hour to access a specialty cancer center. Substantial travel-related barriers exist to accessing care at specialty cancer centers across the United States, particularly for patients living in areas with greater concentrations of historically marginalized communities.

Perspectives of healthcare professionals on the use of immersive virtual reality in teenage and young adult oncology: a qualitative interview study

BackgroundApplications of Virtual Reality (VR) in healthcare continue to grow at a rapid pace, yet the challenges and opportunities associated with VR from the perspective of clinicians and healthcare staff remain underexplored, particularly in the context of Teenage and Young Adult (TYA) oncology. This study aims to bridge this knowledge gap by interviewing clinicians and staff regarding the use of VR in TYA cancer care.MethodFourteen semi-structured qualitative interviews were conducted with a diverse range of healthcare professionals working in TYA oncology within the United Kingdom including oncologists, hematologists, clinical nurse specialists, clinical psychologists, radiographers, play specialists, clinical social workers and youth support coordinators. Data were analysed thematically with three themes and ten sub-themes developed.ResultsThe findings reveal that TYA healthcare professionals are optimistic and enthusiastic about the potential of using VR to enhance cancer care for teenagers and young adults. However, they also expressed notable concerns related to the practical implementation of VR in clinical settings. These concerns included infection and safety risks, privacy and security concerns, cost implications, storage requirements and staff burden. Clinicians and staff proposed valuable applications for VR in TYA oncology specifically in patient distraction, physiotherapy, procedure preparation, and the delivery of psychotherapy, including acceptance and commitment therapy.ConclusionsThis research has demonstrated that despite an enthusiasm to adopt VR in TYA oncology there are still many challenges, both practical and ethical, that must be addressed to enable the successful implementation of VR in hospitals within the UK. Further research into applications of VR for TYA oncology is warranted, particularly in areas of psychology, physiotherapy, and procedure preparation.

Financial Aid in Children, Adolescents and Young Adult's Cancer Care: A Scoping Review.

Background: The financial burden resulting from cancers on families is higher when it arises in young people compared with older adults. Previous research has provided insight into the financial toxicities associated with childhood cancer, but less is known about the efficacy of financial aid systems in reducing the financial burden on families. We conducted a scoping review to identify the determinants of success and failure of financial aid. Methods: Five databases were searched for articles published between January 1, 2000 and December 1, 2022. Dual processes were used to screen and select studies. Through thematic content analysis, we identified barriers and enablers of financial aid, categorised by country income level. Results: From 17 articles, which were evenly split between high-income countries and upper middle- to low-income countries, four major themes emerged: (1) accessibility of support, (2) delivery of support, (3) administration, and (4) psychosocial factors. Within these themes, the enablers identified were (1) support navigators, (2) establishing a direct contact between donors and beneficiaries, (3) implementation of digital solutions to improve outreach, and (4) using cultural and community values to encourage donor engagement. Conclusions: This scoping review identified the determinants of success and failure of financial aid in supporting families in the context of childhood, adolescent, and young adult (CAYA) cancers. By understanding the barriers and enablers identified in this review, organizations could develop pragmatic evidence-based care models and policies to ensure access to assistance is equitable and appropriate for families experiencing CAYA cancers.

Young Adult Cancer Care Partners: A Theoretical Description of an Emerging Population with Unique Needs.

As the U.S. population's demographics shift, young U.S. adults are increasingly engaged in informal caregiving for aging generations. Yet, there is little research on the unique experiences and needs of young adults who take on caregiving roles for adult cancer patients. Herein we demonstrate through a theoretical description that young adult cancer care partners deserve distinct recognition in the cancer control continuum given the psychological, physical, financial, and social features unique to their cancer experience.

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.

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.

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice.

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme

Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme

Adolescent and Young Adult Cancer Placements: Developing Complex Clinical Communication Skills of Medical Students.

Purpose: Following implementation of a student selected module in adolescent and young adult cancer care for medical students, we sought to explore their experiences of the specialty. Methods: We undertook a focus group of five medical students all in their fourth to sixth year of study. Transcripts were transcribed verbatim and analyzed thematically. Results: We identified six key themes repeatedly elicited during the focus group; these were specialized and holistic care, patient's perspective, connectedness and professional boundaries, triadic communication, emotional impacts, and professional development and support. Conclusion: Early exposure to this specialty is positive for students and the model could be replicated elsewhere.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Simple SummaryA cancer diagnosis during adolescence or young adulthood presents unique medical and psychosocial challenges which must be addressed in the provision of quality, comprehensive cancer care. Tailoring services to the needs of this population requires careful work to identify, monitor and evaluate areas of care; however, published work in this area to guide service priorities is limited. This paper presents work done by the Australian Youth Cancer Services to operationalise and deliver quality care to adolescents and young adults with cancer, focusing on nationally coordinated service improvement initiatives and activity data collection in four areas that are of particular concern to young people diagnosed with cancer: clinical trial enrolment, oncofertility, psychosocial care and survivorship. This account may be instructive for health services seeking to improve the delivery and monitoring of cancer care provided to adolescents and young adults. Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Barriers to Pediatric Oncologist Enrollment of Adolescents and Young Adults on a Cross-Network National Clinical Trials Network Supportive Care Cancer Clinical Trial.

Few studies have explored interventions to improve adolescent and young adult (AYA) cancer care delivery. While many AYAs receive cancer care at NCI Community Oncology Research Program (NCORP) sites, few enroll on clinical trials. Barriers and facilitators to pediatric oncologist activation of and enrollment on an AYA cross-network National Clinical Trials Network (NCTN) supportive care trial were assessed using a survey that was administered to 162 stakeholders representing all 47 children's oncology group (COG) institutions affiliated to an NCORP. Fifty-eight stakeholders participated representing 62% of all sites surveyed. Approximately half of participants (45%) were unaware of the trial. Seven sites had the study open and one enrolled a patient. Reasons for not opening and enrolling on the trial included limited research staff and resources, low anticipated accrual, and lower prioritization of the trial. Enrollment facilitators included having a local "AYA champion," improving communication between pediatric and medical oncology, and having site education on available AYA trials. Interventions focused on increasing site and provider awareness of AYA trials and decreasing local barriers to AYA enrollment are needed.

Harmonizing evidence-based practice, implementation context, and implementation strategies with user-centered design: a case example in young adult cancer care

BackgroundAttempting to implement evidence-based practices in contexts for which they are not well suited may compromise their fidelity and effectiveness or burden users (e.g., patients, providers, healthcare organizations) with elaborate strategies intended to force implementation. To improve the fit between evidence-based practices and contexts, implementation science experts have called for methods for adapting evidence-based practices and contexts and tailoring implementation strategies; yet, methods for considering the dynamic interplay among evidence-based practices, contexts, and implementation strategies remain lacking. We argue that harmonizing the three can be facilitated by user-centered design, an iterative and highly stakeholder-engaged set of principles and methods.MethodsThis paper presents a case example in which we used a three-phase user-centered design process to design and plan to implement a care coordination intervention for young adults with cancer. Specifically, we used usability testing to redesign and augment an existing patient-reported outcome measure that served as the basis for our intervention to optimize its usability and usefulness, ethnographic contextual inquiry to prepare the context (i.e., a comprehensive cancer center) to promote receptivity to implementation, and iterative prototyping workshops with a multidisciplinary design team to design the care coordination intervention and anticipate implementation strategies needed to enhance contextual fit.ResultsOur user-centered design process resulted in the Young Adult Needs Assessment and Service Bridge (NA-SB), including a patient-reported outcome measure and a collection of referral pathways that are triggered by the needs young adults report, as well as implementation guidance. By ensuring NA-SB directly responded to features of users and context, we designed NA-SB for implementation, potentially minimizing the strategies needed to address misalignment that may have otherwise existed. Furthermore, we designed NA-SB for scale-up; by engaging users from other cancer programs across the country to identify points of contextual variation which would require flexibility in delivery, we created a tool intended to accommodate diverse contexts.ConclusionsUser-centered design can help maximize usability and usefulness when designing evidence-based practices, preparing contexts, and informing implementation strategies—in effect, harmonizing evidence-based practices, contexts, and implementation strategies to promote implementation and effectiveness.

Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service

AimsAdolescents and young adults aged 15–39 years with cancer face unique medical, practical and psychosocial issues. In the UK, principal treatment centres and programmes have been designed to care for teenage and young adult patients aged 13–24 years in an age-appropriate manner. However, for young adults (YAs) aged 25–39 years with cancer, little access to age-specific support is available. The aim of this study was to examine this possible gap by qualitatively exploring YA care experiences, involving patients as research partners in the analysis to ensure robust results. Materials and methodsWe conducted a phenomenological qualitative study with YAs diagnosed with any cancer type between ages 25 and 39 years old in the last 5 years. Participants took part in interviews or focus groups and data were analysed using inductive thematic analysis. Results were shaped in an iterative process with the initial coders and four YA patients who did not participate in the study to improve the rigor of the results. ResultsSixty-five YAs with a range of tumour types participated. We identified seven themes and 13 subthemes. YAs found navigating the healthcare system difficult and commonly experienced prolonged diagnostic pathways. Participants felt under-informed about clinical details and the long-term implications of side-effects on daily life. YAs found online resources overwhelming but also a source of information and treatment support. Some patients regretted not discussing fertility before cancer treatment or felt uninformed or rushed when making fertility preservation decisions. A lack of age-tailored content or age-specific groups deterred YAs from accessing psychological support and rehabilitation services. ConclusionsYAs with cancer may miss some benefits provided to teenagers and young adults in age-tailored cancer services. Improving services for YAs in adult settings should focus on provision of age-specific information and access to existing relevant support.

Abstract S10-03: Adolescent and young adult cancer patient and survivor employment changes during COVID-19 are associated with financial toxicity

Abstract Purpose: Describe associations between changes in employment during the COVID-19 pandemic and financial toxicity among adolescent and young adult (AYA) cancer patients and survivors. Methods: Eligible individuals were diagnosed between 15-39 years of age, currently age ≥18, and recruited through the Huntsman-Intermountain Adolescent and Young Adult Cancer Care Program. We sent the survey to N=709. Survey questions included demographics, employment, and the 11-item COmprehensive Score for financial Toxicity (COST) which captures financial toxicity in the last four weeks. COST is scored from 0 to 44 with lower scores indicating greater financial toxicity. Scores were dichotomized as high (0-21) or low (22-44). Changes in employment since March 2020 were categorized as no change, increase in hours, and decrease in hours/lost job. We calculated descriptive statistics and fit a multivariable logistic regression to examine the association between employment change and financial toxicity controlling for current age, gender, and treatment status. Results: Of 280 respondents (39.5% participation), 198 (70.7%) were employed prior to the pandemic and were thus included in analyses. Employed individuals were a mean of 29.4 years of age (range 18-58), 64.3% were female, and 50.5% had received cancer treatment since March 2020. Nearly a third (31.3%) had lost their job or reported reduced hours; 50.3% reported high financial toxicity. Among those previously employed, participants who lost their job or had their hours reduced had nearly six times the odds of high financial toxicity than those who reported no change in hours (Odds Ratio [OR]=5.8, 95% Confidence Interval [CI]: 2.6-12.9). In the same model, the odds of reporting high financial toxicity was over twice as high among females than males (OR=2.3, 95% CI: 1.2-4.5). Treatment status and age were not significant. Conclusions: Employment changes during the COVID-19 pandemic resulted in increased financial toxicity among a population already susceptible to high financial hardship. Societal gender inequity appears to be mirrored in participants’ financial toxicity during the pandemic. Employment interventions for patients and survivors of AYA cancers who have experienced job loss or reduction in work hours during the pandemic are needed and may particularly benefit females. Citation Format: Austin Waters, Heydon Kaddas, Karely Mann, Perla L. Vaca Lopez, Echo L. Warner, Joemy Ramsay, Judy Ou, Nicole Ray, Tomoko Tsukamoto, Douglas B. Fair, Joseph M. Letourneau, Mark A. Lewis, David A. Gill, Lauri Linder, Anne C. Kirchhoff. Adolescent and young adult cancer patient and survivor employment changes during COVID-19 are associated with financial toxicity [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2021 Feb 3-5. Philadelphia (PA): AACR; Clin Cancer Res 2021;27(6_Suppl):Abstract nr S10-03.

Abstract S06-04: Telehealth experiences of adolescent and young adult cancer patients and survivors during the COVID-19 pandemic

Abstract Purpose: To describe adolescent and young adult (AYA) cancer patients’ and survivors’ experiences with telehealth during the COVID-19 pandemic. Methods: Eligible participants were identified through the Huntsman Intermountain Adolescent and Young Adult Cancer Care Program, which provides age-specific programming and patient navigation to AYA cancer patients and survivors in Utah and surrounding Mountain West states. Participants were emailed an online survey if they were currently age 18 or older and had been diagnosed with cancer between the ages of 15-39 years. We applied descriptive statistics to summarize demographics, comfortability with technology, access to reliable internet connection, and perceived quality of care while using telehealth. Results: AYAs (N=280) were an average of 29.4 years old at survey (range 18-58); 65.2% were female and 82.4% non-Hispanic white. Over half (54.2%) had received cancer treatment since March 2020. All participants reported owning a computer, tablet, and/or smart phone they could use for telehealth appointments. The majority (93.5%) reported almost always or always having a reliable internet connection. AYAs felt most comfortable having a telehealth appointment in their own home (96.4%); only 12.5% felt comfortable using telehealth at work. Since March 2020, (N=183) 65.4% had a health care visit moved to a telehealth platform due to COVID-19. Of those who recently moved to telehealth, 60.1% had an oncology visit, 33.9% had a primary care visit, and 31.1% had a mental health visit. Additionally over one-third (35.2%) reported the quality of their medical care had decreased since moving to telehealth. This was most commonly due to 1) troubles with audio, video, or connecting through telehealth platforms; 2) telehealth visits feeling impersonal; and 3) feeling that providers more easily dismissed or did not fully address their symptoms. Conclusions: Although AYAs are digital natives, over one-third of AYAs feel the quality of their medical care has decreased since moving to telehealth for COVID-19. Further research should explore medical provider training in using telehealth systems and encourage telehealth practices that help AYAs feel more supported and understood. Citation Format: Karely Mann, Austin R. Waters, Perla L. Vaca Lopez, Echo L. Warner, Judy Ou, Heydon Kaddas, Joemy Ramsay, Nicole Ray, Tomoko Tsukamoto, Douglas B. Fair, Joseph M. Letourneau, Mark A. Lewis, David Gill, Lauri Linder, Anne C. Kirchhoff. Telehealth experiences of adolescent and young adult cancer patients and survivors during the COVID-19 pandemic [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2021 Feb 3-5. Philadelphia (PA): AACR; Clin Cancer Res 2021;27(6_Suppl):Abstract nr S06-04.

Supporting the Needs of Adolescents and Young Adults: Integrated Palliative Care and Psychiatry Clinic for Adolescents and Young Adults with Cancer.

Simple SummaryAdolescents and young adults (AYAs) with cancer experience a high level of distress and have unique unmet palliative and supportive care needs. There is limited knowledge about the symptom burden, quality of life, and type of care that AYA patients receive. In 2017, a dedicated AYA-specialized palliative care clinic was established at Princess Margaret Cancer Centre in Canada, with a collaborative approach between palliative care and psychiatry. This study aims to describe the demographics and symptoms burden of AYA cancer patients who attended the integrated palliative care and psychiatry clinic, measure the impact of the clinic on AYAs’ symptom control, and examine their end-of-life outcomes.Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encourage early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were referred to the Integrated AYA Palliative Care and Psychiatry Clinic (IAPCPC) at the Princess Margaret Cancer Centre between May 2017 and November 2019 (n = 69). Demographic data, symptom prevalence, change in symptom scores between baseline consultation and first follow-up, and intensity of end-of-life care were collected from the patients’ medical charts, analyzed, and reported. Of the 69 patients, 59% were female, and sarcoma was the most common cancer. A majority of patients had at least one symptom scored as moderate to severe; tiredness, pain, and sleep problems were the highest scored symptoms. More than one-third used medical cannabis to manage their symptoms. Symptom scores improved in 61% after the first clinic visit. Out of the 69 patients, 50 (72.5%) had died by October 2020, with a median time between the initial clinic referral and death of 5 months (range 1–32). Three patients (6%) received chemotherapy, and eight (16%) were admitted to an intensive care unit during the last month of life. In conclusion, AYAs with advanced cancer have a high burden of palliative and psychosocial symptoms. Creating a specialized AYA palliative care clinic integrated with psychiatry showed promising results in improving symptom scores and end-of-life planning.

Worldwide benefits of improving cancer care for adolescents and young adults in LMICs.

Worldwide benefits of improving cancer care for adolescents and young adults in LMICs.

The BRIGHTLIGHT National Survey of the Impact of Specialist Teenage and Young Adult Cancer Care on Caregivers' Information and Support Needs.

Teenage and young adult cancer services in England are centralized in 13 principal treatment centers (TYA-PTC). These "specialist services" are designed to support caregivers as well as young people. To evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/some care in a TYA-PTC. Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed 6 months after diagnosis. Comparisons were made according to where young people's care was delivered: all, some, or no care in a TYA-PTC. Principal components analysis reduced the questionnaire to 5 dimensions, which were used as dependent variables in subsequent regression analysis. Four hundred seventy-six responses of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle-aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions. Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs. Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals, nurses need to optimize opportunities for caregivers to be involved in decision making.

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.