A Narrative Review of Models of Care for Adolescents and Young Adults with Cancer: Barriers and Recommendations

Abstract

Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population.

Introduction

Considerable research has highlighted the unique challenges associated with developing age-appropriate and developmentally appropriate models of care and improving suitability of existing health services for adolescents and young adults (AYAs) with cancer.^1–9 These articles suggest that optimal care for AYAs with cancer addresses the distinct biology of disease as well as critically associated psychosocial issues.^1,10 The timing of diagnosis coincides with various age-related issues characteristic of adolescence and young adulthood. These include individual variability in psychosocial development and maturity, vulnerability to mental health issues, engagement in education and career planning, and emerging independence with regard to insurance/financial and medical issues.^9,11 Addressing the many complex issues of AYA cancer care requires dedicated youth-focused hospital- and community-based services. Accordingly, unique models of care and clinical care protocols for AYAs with cancer have recently proliferated worldwide.^7,8,12–15

Given this, it is important to distill information about approaches to care for AYAs with cancer that ensure high-quality outcomes and careful consideration of the interaction between AYAs' complex care needs, established healthcare systems and practices, and community-based services.^14,16 We, therefore, conducted a narrative review of the existing literature on models of care for AYAs with cancer. Our aims were to (1) identify the common elements and approaches to AYA care worldwide, (2) describe barriers to implementing AYA-specific models of care, and (3) provide recommendations for consideration when developing a robust model of care for AYA oncology.

Methods

We followed published guidance by the Economic and Social Research Council for conducting a narrative review.¹⁷ This form of review is considered ideal where a broad overview that synthesizes both current empirical evidence and theoretical understanding is required.¹⁸ We searched published peer-reviewed literature using Medline, EMBASE, and PsycINFO, and for relevant reports using two gray literature databases (OpenGrey and Grey Literature Report). We searched databases using the key words presented in Table 1, reviewing titles and abstracts to identify key (J.E.F. and K.M.) references. We included articles published in English in the past 7 years to ensure maximum relevance, given the rapidly changing nature of cancer care and more recently recognized unique needs of the AYA population to other age groups. Additional articles were also obtained from reference list review and experts in the field. We then screened articles for relevance, importance, quality, and potential clinical practice impact before inclusion (J.E.F., U.M.S.-D., and C.E.W.). We included international articles on AYAs' experiences of any cancer diagnosis, based on the broadest AYA age parameters of 12–40 years.¹⁹

Table 1.

Search Terms Used

Area	Search terms
Population	[AYA or “emerging adult” or adolescen$ or “young adult” or teen$ or youth]
	and [oncol$ or neoplasm or cancer or tumor or tumour or leuk$]
	and limits: [English language] and [humans] and [year = 2008–October 2015]
Health services	and [Health service$ or “health care” or referral path$ or “models of care” or “model of care” or “service delivery”]

AYAs, adolescents and young adults.

Results

Models of care

The articles included in our review highlighted that AYAs do not fit comfortably or neatly in pediatric or adult organizational models of oncology care.⁸ Pediatric models of care tend to be family centered,^8,20 with the patient, family, and physician involved in treatment decisions and parents ultimately responsible for informed consent to treatment. Multidisciplinary teams (MDTs) work in concert, providing supportive, nutritional, and psychosocial care alongside medical treatment. In contrast, adult models of oncology care are typically patient and disease-focused. Although family members are often consulted and included throughout treatment, decisions tend to be made between the patient and physician, with the patient ultimately providing informed consent to treatment. Psychosocial care (including psychologists and social workers) and allied health support (such as access to clinical dieticians, physiotherapists, and exercise physiologists) are not universally provided, and the patients are assumed capable of navigating the health system and advocating for their own needs.

Given that AYAs with cancer share many treatment needs with both pediatric and adult patients, these models can struggle to address AYAs' need for elements of both patient-focused and family-centered care. For example, some AYAs may be capable of, and desire autonomy in, treatment decisions, whereas others may be reliant on family and significant others to support their treatment decisions.^21,22 Therefore, it is important that AYAs receive age-appropriate care from specialized AYA oncology programs that complement existing care services^8,14,23 and facilitate collaboration between pediatric and adult oncology to ensure AYAs have access to necessary expertise.¹

Although the following discussion focuses on the two key approaches to implementing specialized AYA models of care as identified by our literature review, it is worth briefly noting that in reality models of care sit on a continuum from no specific AYA program to an AYA cancer service that has designated facilities and functions as an independent service. Along this continuum are pediatric or adult cancer services with no specialist AYA support providing the same care across patient group, pediatric or adult cancer services that have AYA MDT support but no designated space, and pediatric or adult services that have AYA MDT service and designated space. Not all centers will have the numbers or resources to develop specialist AYA support, but access to important services such as clinical trials, education/vocation support, peer support, and other age-appropriate services generally increases across the continuum.

Specialized AYA programs embedded within pediatric and/or adult facilities

Collaboration across pediatric and adult models of cancer care has consistently been reported as key to the success of models of care worldwide.^5,8,14 Specialized AYA care programs highlight the importance of MDTs consisting of clinicians and psychosocial and allied health professionals, coordinated by an overall program leader with expertise in the unique needs of AYAs.^7,13,23 Care coordination may be carried out by a healthcare professional from a variety of backgrounds (e.g., social worker and clinical nurse consultant) with AYA-specific oncology expertise,^13,14,24,25 providing consistency, advocacy, and support for AYAs. Care coordinators are considered central for assisting AYAs to navigate existing health services and providing individualized support to ensure AYAs' psychosocial needs are being addressed across both pediatric and adult facilities.^13,14,24,25 Ensuring continuity of care across both settings can be facilitated through regular liaisons between the primary oncology team and community-based services, giving timely and age-appropriate information to AYAs, and providing both practical and emotional support to the AYAs and their family.

However, AYAs generally represent a small percentage of a facility's pediatric or adult patient population,^5,26 and they may consequently be placed in wards with significantly older or younger patients. A lack of dedicated space could lead to feelings of isolation, thus it is essential to consider building a sense of community with other AYA patients.²⁷ An additional challenge is that staff outside of the AYA MDT may lack expertise and sensitivity to the needs of young people,²⁷ emphasizing the importance of ongoing staff education.⁷

AYA-specific treatment centers

AYAs report a desire for high-quality staff with expertise in AYA care, and a need for specialized AYA facilities.^27,28 AYA-specific treatment facilities allow AYAs to receive cancer care in a purpose-built clinical environment tailored to their unique developmental needs,^14,24,28,29 such as those pioneered in the United Kingdom (Teenage Cancer Trust).¹⁴ Regular AYA consumer engagement is crucial in providing valuable insights into how to develop specialized care services.^7,13,30,31 For example, AYAs treated in AYA-specific settings report valuing access to facilities for recreation/distraction (including electronics and games), relaxation and studying, opportunities to connect with other young people with cancer, both face-to-face and online, and the opportunity for privacy when desired.^15,28,30,32

However, AYA-specific facilities can be costly,⁸ and their development may be determined by local issues such as the availability of appropriate funding, infrastructure, expert staff, available space, and jurisdictional issues.³³ Centralization of services in AYA-specific treatment centers may facilitate access to age-specific expertise, but can mean that some AYAs and their families are faced with significant travel.³⁴ This has the potential to compromise treatment adherence, increase out-of-pocket costs compounded by limited access to insurance, and increase disruption to normal daily activities (e.g., regularly attending school, hobbies, or connecting socially with friends).

Overall barriers to care

AYAs experience barriers to appropriate care at the patient, service, and systems levels.³⁵ Age,^2,5 lack of maturity,³⁶ and lack of experience in managing their own healthcare needs^37,38 are commonly reported AYA patient-level barriers. AYAs with cancer living in rural and regional areas who are likely to travel greater distances for cancer-related care have an increased risk of mortality compared with those living in metropolitan areas,^30,39 possibly due to greater incidences of delay in diagnosis among AYA living rurally.⁴⁰ In addition, in countries where healthcare is not covered by government funding, lack of insurance may prohibit some AYAs from obtaining appropriate care.⁴¹ Developing countries face further challenges such as poverty, lack of trained personnel to recognize and treat cancer early, and the inability to implement known preventative measures.¹⁵ Although research is scarce on the impact of cultural and racial background on outcomes, North American AYA minority groups (Native Americans, African Americans, and Hispanics) are more likely to report difficulties accessing appropriate cancer services, difficulties obtaining financial support, and unmet information needs related to concerns of relapse.⁴²

At a healthcare service level, availability of AYA-specific expertise appears to be a significant factor in determining outcomes for AYAs,^36,37 highlighting the need for health professionals to have access to and knowledge of evidence for AYA-specific best-practice treatment (including age-appropriate clinical trials).^38,43,44 Availability of AYA services and information can be variable and may be restricted to central or metropolitan locations.¹⁴ System-level barriers include lack of societal, health service, and government awareness for necessity of AYA-specific cancer programs, meaning availability of AYA-specific care can be limited.⁴

Recommendations for AYA models of care

Our review identified several articles that articulated key components of care for AYAs with cancer.^{4,6–8,13,32,45–47} However, evidence is lacking on the efficacy of these components, with heavy reliance on expert opinion.⁴⁶ Measuring the success of AYAs' cancer care is, therefore, both a priority and a challenge, and must take into account the heterogeneous nature of the population affected by cancer during adolescence and emerging adulthood.^4,48 The following is a summary of features commonly suggested to be part of best-practice AYA care:

• Access to treatment with experts in AYA cancer and age-appropriate clinical trials, either through embedded or standalone specialist care, which is associated with better outcomes.^46,49,50

• Specialized overall program leaders with expertise in AYA cancer to lead care services.^7,13,23,47

• Regular team meetings, which were reported as important to the ongoing program.⁷

• Educational lectures and training for hospital staff to help build expertise and facilitate culture change more generally within pediatric or adult hospitals.⁷

• Regular consultations with AYAs who have received care within a local jurisdiction to gain valuable insight into model of care development and refinement. Ongoing engagement and collaboration with AYA consumers are important in ensuring that their preferences for care are carefully considered.^{7,13,15,27,30,31}

• MDTs who consider AYA-specific concerns^7,47: age-appropriate supportive care, fertility counseling, and psychosocial support (including screening and follow-up care) are critical.^4,6,27,51 Acknowledgment of other relevant AYA issues is important with assistance provided where necessary, including, for example, education and career development, body image, sexuality and relationships, and alcohol/substance use.^4,6,52,53

• Age-appropriate information and resources as AYAs with cancer desire information during and after treatment, particularly in the areas of fertility preservation, sexual health, peer support, mental health, and coping strategies.^{23,27,42,47,54–56}

• Acknowledgment of the autonomy of the AYA by providing patient-focused care within the context of the AYA's family.^7,46 For example, communication should be developmentally appropriate and directed toward the AYA without excluding parents during consultations.^25,47

• Physical space dedicated to AYAs and/or opportunities for engaging with other AYAs with cancer (either face-to-face or online), which can help foster a sense of belonging and reduce isolation throughout treatment.^{15,27,28,30,32}

• Ongoing care throughout survivorship to support AYAs through issues related to increasing risk of late effects (both physical and psychological) as they age.^41,42,55,56

Models of long-term survivorship care

The complexity of AYA cancer care extends beyond the completion of treatment and continues well into early and even late adulthood, wherein survivors face late-arising treatment-related complications.^41,42,55,56 Many survivors are not engaged in recommended survivorship care, due to poor understanding of their cancer history and risk of late effects, aversion to return to hospital for follow-up, and other logistical reasons (e.g., cost and time demands).^1,41 Clearer pathways for the coordination of care are needed to improve continuity of care in long-term survivorship, as well as the development of national guidelines and training for primary and allied health professionals. Connecting survivors to community-based support services may also be beneficial in helping them cope with life after cancer, for example, to minimize cancer-related anxiety or to alleviate unrealistic concerns about life returning to “normal” through professional and peer support.¹⁶

Conclusions

Establishing a model of care for AYAs requires consideration of factors across the patient, service, and system levels. Measuring the success of AYAs' cancer care is, therefore, a priority, but remains challenging and needs to account for the heterogeneous nature of the population affected by cancer during adolescence and emerging adulthood.^4,48 Key features of success include access to health professionals with expertise with AYA cancer nested within a multidisciplinary approach, coordinated care, integrated psychosocial support, and age-appropriate information. Regardless of whether care is embedded in existing pediatric or adult oncology health services or standalone, consideration of existing practices and guidelines, local resources, and jurisdictional requirements is needed to inform what model of care will best work in a given location, while working toward national, streamlined, standards, and practices. Successful AYA care fosters a sense of belonging among AYAs, and at their core is driven by AYAs' ongoing input and voice.

Footnotes

Acknowledgments

We would like to thank Kate Marshall for her contribution to this research. This research was supported by CanTeen. C.E.W. is supported by a Career Development Fellowship from the National Health and Medical Research Council (NHMRC) of Australia (APP1067501). J.E.F. and C.S. are supported by The Kids' Cancer Project. U.M.S.-D. is supported by an Early Career Fellowship from the Cancer Institute of New South Wales (ID: 14/ECF/1-11) and an Early Career Fellowship from the NHMRC, Australia (APP1111800). The Behavioural Sciences Unit is proudly supported by the Kids with Cancer Foundation and by the Kids Cancer Alliance as well as a Cancer Council New South Wales Program Grant PG16-02 with the support of the Estate of the Late Harry McPaul.

Author Disclosure Statement

No competing financial interests exist.

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