End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

Abstract

A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15–39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.

Introduction

The provision of age-appropriate end-of-life care is critical for adolescents and young adults (AYAs) with cancer. Many AYAs with cancer continue to face poorer medical outcomes than children, due to a combination of factors, including unique cancer biology, rare and poorer prognosis disease, diagnostic delays, and limited access to appropriate clinical trials.^1–4 Adolescence is a time when young people's coping skills are emerging,⁵ and is also a time of susceptibility for mental health disorders.⁶ As a result, AYAs with cancer are at greater risk for developing more severe and complex patterns of distress than other age groups.⁷ This may be particularly evident when faced with cancer progression. The combination of AYAs' medical challenges and psychosocial vulnerabilities means that ensuring high-quality end-of-life communication that meets the needs of AYAs with cancer, and their families, is crucial.

It is unclear how frequently AYAs are included in discussions about prognosis or end-of-life care.⁸ Cancer patients, including AYAs, who do not have the opportunity to discuss their prognosis honestly, can be more anxious and may require more medication due to inadequate pain management.^9–11 AYAs' families may also experience poorer outcomes if end-of-life conversations do not occur.^12–15 Seminal research revealed that, while none of the parents who talked to their child about death later regretted this, 27% of those who did not talk to their child later reported wishing they had.¹⁴ Among this minority, parents appeared more at risk of later regrets if their child was older (AYA aged) and if they understood that they were dying. Bereaved parents with these regrets were subsequently also more likely to report moderate-severe depression symptoms, relative to parents with no regrets. Understanding how best to prepare and support AYAs' families for end-of-life in the context of these complex and varying preferences is critical to reduce distress and negative psychosocial adjustment.¹⁶

This narrative review examined the existing literature on end-of-life communication for AYAs with cancer. We aimed to review the current literature on common approaches to end-of-life care for AYAs with cancer, highlight gaps in the literature, and provide evidence-based best-practice recommendations for clinicians in the field. It is part of a series of reviews of best-practice care for AYAs with cancer^17–19 undertaken to inform the new Australian Youth Cancer Framework.²⁰

Methods

We conducted a narrative review, following guidance from the Economic and Social Research Council.²¹ Narrative review methodology is considered to be the best process by which to achieve a broad synthesis of a research area, integrating multiple sources of current empirical evidence and theoretical understanding of a complex topic. The strength in narrative reviews lies in their capacity to capture diversities and reflect pluralities of understanding.^22–24 This nuanced approach was vital in considering the end-of-life care literature. We located peer-reviewed literature using Medline, EMBASE, and PsycINFO, and conducted searches for relevant reports from grey literature databases (OpenGrey and Grey Literature Report). To capture all available, relevant studies, search terms were kept deliberately broad, with articles relevant to end-of-life communication selected manually (Table 1). Key articles published between 2008 and 2018 were selected from title and abstract review (by JF and KM [see Acknowledgments]).²⁵ We then screened articles according to relevance, importance, quality, and potential clinical-practice impact before inclusion (USD, CW, and JF) and included articles if they addressed issues relating to preferences for and/or the impact of end-of-life communication, including timing, content, and format. We found further key articles through consultation with experts in the field and reference list review of published articles and reviews on the topic of end-of-life communication/care.^26–29 Studies addressing these issues from AYAs, as well as family and health-professional perspectives were included, with the broadest scope of AYA age definitions included to capture international data (i.e., 12–40 years).^30,31 Consistent with narrative review methodology, we used expert guidance and clinical experience to inform our synthesis and interpretation of results presented below.^30,31

Table 1.

Search Terms

Search terms
[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$]
AND [palliati$ OR “end of life”]
AND limits: [English language] AND [humans] AND [year = 2008–2018]

“$” indicates truncation.

Results

End-of-life communication: current state of the evidence

Our review draws from evidence generated by 74 institutions across nine countries (48% and 65% from the United States). These studies represented the experiences of 13,665 AYAs and/or their families (n = 337 parents/family members); just two studies explicitly addressed the perspectives of health care professionals (7%) with a further six clinical recommendation articles (21%) included. Three core features of end-of-life conversations with AYAs have typically been addressed to date: their timing, content, and facilitation.

Conversation timing

The literature indicates that the timing of end-of-life discussions is very important. In the United States, Bell and colleagues⁸ found that half of initial end-of-life discussions occurred in just the last 30 days of life, leaving little time to psychologically prepare for death. Poor clinician knowledge of communication strategies, a desire to shield AYAs from distress, and professionals' difficulty in dealing with personal emotions may all delay end-of-life conversations.^8,32,33 Other factors, including a patient's age, family/cultural ethnicity and preferences, discipline of health care provider, and type of treatment center, may also further influence AYA patients' overall experiences of end-of-life care.^8,34–36 One qualitative study of Mexican oncologists highlighted that they preferred to broach end-of-life topics only once they had determined curative treatment options had been unsuccessful.³⁴

Although little research has explored this, the timing of these conversations may also vary between diagnosis groups; one article reported that end-of-life discussion for North American AYAs with leukemia/lymphoma was more likely to occur in the last seven days of life, compared to patients with either a solid tumor (89 days) or central nervous system/brain tumor diagnoses (37 days).⁸ This disparity may have been driven by differences in treatment options and corresponding prognostic uncertainty. For example, more protocols are available for a diagnosis of leukemia or lymphoma, which may encourage a longer period of aggressive treatment before goals of care shift away from curative intent. This distinction is partly due to the availability of bone marrow transplantation as an additional or final treatment option for many leukemia/lymphoma patients. This can change the treatment decision-making dynamic to one in which there is often “one more option left,” even for patients with very advanced disease. More research is needed to explore differences in end-of-life communication between diagnostic groups.

Conversation content

AYAs with cancer report wanting to be involved in discussions regarding end-of-life or palliative care.³⁷ Honest communication about prognosis, and an AYA patient's corresponding hopes, worries, and medical decisions, is particularly important.²⁷ Many AYAs' end-of-life preferences are not known to their families; however,³⁷ this may place AYAs at risk of dying in a state of emotional isolation.³² End-of-life preferences reported by AYAs include the following: being physically comfortable and free from pain, understanding treatment options, dying a “natural” death (although the meaning of this is unclear/may vary), letting loved ones know their final wishes, and being able to stay in their own home.^37,38

The content of end-of-life conversations may have real consequences for practical aspects of the end-of-life care that AYAs receive. For example, evidence from multiple countries suggests that the majority of AYAs with cancer die in a hospital setting,^8,38–40 despite suggestions by AYAs' families that they may prefer to die at home.^34,41 In a study of end-of-life preferences of American 15–39 year olds with cancer, Mack and colleagues found that most patients receive intensive life-prolonging measures regardless of their last stated preference.³⁸ This may stem from a medical team's overemphasis on curative treatment,⁸ a lack of open, honest, and effective communication, or a lack of awareness of palliative treatment options (such as hospice care) in AYAs and their families.³⁷

Although discussing an AYA's transition from curative to palliative care may be challenging for health professionals, it may increase the likelihood of AYAs' end-of-life goals being met. For example, in the United States, those who discussed these goals with their primary oncologist were more likely to die at home.⁸ However, it is important to note variability in AYAs' situations and preferences: not all AYAs want to die at home; doing so may pose emotional and logistical challenges to families⁴¹; and many hospice services are not available for AYAs in home or community settings, potentially leaving carers unsupported.^41,42 Taken together, it seems that end-of-life conversations need to carefully explore and balance AYA preferences with the needs and capacities of their family and support systems; perceptions of clear and compassionate communication may be more important than specific elements of care at end-of-life.^43,44

Conversation participants and facilitators

End-of-life conversations may be best facilitated by a member of the health care team with strong rapport with the AYA, regardless of their discipline, who is comfortable broaching potentially complex or confronting emotional concerns within the context of that professional relationship.^45,46

Conversations addressing end-of-life topics can be uncomfortable and anxiety-provoking to initiate. AYA patients' age places them at a particular developmental disadvantage in participating in these conversations, as particularly in the earlier teenage years, the sophisticated social, emotional, and communicative skills needed may still be emerging. Furthermore, few AYAs will have yet had personal experiences with death or encounters with the end-of-life phase. The family background and culture of patients and families may also play a role in facilitating or hindering end-of-life conversations. For example, some literature points to family-based decision-making models in different cultures influencing whether the young patient is involved in conversations about their care.^34,47,48 For example, in several non-Western cultures there is less emphasis on individualism and autonomy for the adolescent; rather, family (primarily parents) might prefer to lead conversations and decision making about the young person's care, which may not always involve the young person themselves.

Health care teams caring for AYAs with cancer need to be aware of the critical role they can play in initiating and facilitating these conversations to address palliative care and end-of-life issues with AYAs. Figure 1 outlines some of the ways in which end-of-life conversations may both address, and be impacted by, AYAs' complex and intersecting developmental needs. Taken together, the existing literature suggests that what best-practice end-of-life communication looks like in the three key domains discussed here (timing, content, and provider facilitation) is likely to differ according to individual characteristics of each AYA patient, and their family/social context. The timing, content, and facilitation of these conversations are also likely to be interdependent and interacting variables—for example, the content of an end-of-life conversation may differ depending on the precise point during the cancer care trajectory that it is raised, and the nature of the relationship between the AYA and the health care provider facilitating the conversations.⁴⁶ As Figure 1 highlights, all of these interactions occur within a broader societal, cultural, and legal context.⁴⁹

FIG. 1.

The developmental context for end-of-life communication with AYA cancer patients. Adapted from Wiener et al. (2015). AYA, adolescents and young adult. Color images are available online.

Discussion

Clinical and research recommendations

Although this review synthesized evidence relevant only to some aspects of the model in Figure 1, several concrete recommendations for clinical practice nevertheless emerged. These are summarized in Table 2. Below we discuss our recommendations in turn, and then highlight knowledge gaps that remain, to inform future research directions.

Table 2.

Key Practice Recommendations for End-of-Life Communication with Adolescents and Young Adults

When	Introduce palliative care team members earlier during treatment to facilitate opening conversations to end-of-life concepts before disease-/symptom-related “crises” or the cessation of active (curative) treatment
	Raise the possibility of palliative care at various time points in the treatment journey, including key transition points during care, or where symptom burden may have increased.
	Introduce the palliative care team early during treatment (e.g., for symptom management) to provide a “bridge” if it becomes evident that treatment may not be successful.
	Re-address end-of-life concerns at the time of relapse and also at key treatment junctures, such as at the introduction of stem cell treatment transplant, so families can become better prepared for the possibility of death.
Who	Ensure the wider multidisciplinary team is confident and adequately skilled to support end-of-life conversations with AYAs
	Flag the need to have conversations about treatment goals and the future with the AYA patient, and check who they want involved in that conversation.
	Check understanding of end-of-life and current treatment goals with both the parent and AYA, while simultaneously focusing on their current life, quality of life, goals, and activities.
What	Tailor the content of end-of-life conversations to the individual patient, and the unique context of the particular time point the conversation is being introduced
	Provide honest and complete information regarding disease progression.
	Discuss AYAs' priorities regarding their current lifestyle, including important aspects of their routine, and social activities.
	Keep AYAs informed about their diagnosis, treatment, and prognosis even if treatment is ineffective or prognosis is poor.
	If available, offer AYAs hospice services so that they can make an informed decision.
How	Use structured advance care planning tools to scaffold conversations, and as a mechanism to facilitate communication between AYA patients, their families, and members of the multidisciplinary care team
	Address AYA and/or family willingness and comfort with opening end-of-life conversations by acknowledging their concerns, while also gently outlining the ways in which such conversations may be helpful. Empower the AYA/family to determine how much they wish to delve into these topics at each given conversation opportunity.
	Be aware of, and help AYA to clarify how they would like to spend their remaining time, as well as concerns they may have around involving/including family and loved ones (e.g., concerns about burdening family) and how the treating team can support them.
	Support the young person by maintaining quality of life, continuing and pursuing current activities, spending time in the environments they want to as far as possible, and exploring/identifying place of death preferences, as well as preference for how they may be remembered and/or their family/loved ones supported after their eventual death.
	Recognize each patient as an individual who may thus have different personal preferences that change throughout care.
	Be aware of the language used to initiate end-of-life discussions; there is the potential to misinterpret meaning. For example, comments such as “there is nothing more we can do” may be perceived as abandonment.

AYA, adolescents and young adult.

(1) When: Introduce palliative care team members earlier during treatment to facilitate opening conversations to end-of-life concepts before disease-/symptom-related “crises” or the cessation of active (curative) treatment

Evidenced-based practice guidelines highlight the importance (and potential benefits) of earlier introduction of age-appropriate concurrent palliative care services for children and AYAs.^{28,41,48,50–53} Palliative care is not synonymous with “end-of-life care”; rather, it involves ongoing integration of patient-centered communication and symptom management. As such, the palliative care team is well placed to initiate and support processes around end-of-life communication, both when they are early and hypothetical, as well as when it is necessary to support a patient with incurable disease. Consequently, recommendations around the early introduction of palliative care teams as a standard of care^28,50,51,54 may also support realistic or hypothetical discussion around their preferences at an earlier stage.

Barriers and knowledge gaps

The optimal timing for introducing end-of-life issues, and factors influencing AYA patient preferences for palliative care, remains unknown. Little research has examined individual patient or family factors that impact their readiness or willingness to engage with these topics. In addition, the literature to date may be somewhat biased toward including data from young people who already feel more comfortable, and/or who have had more positive experiences, with these conversations. Few of the studies reviewed reported a response rate, and for those that did it varied greatly (24%–91%). It is therefore unclear to what extent self-selection biases may have played a role in the existing research. Recent studies have highlighted various factors, including important familial and cultural factors, which may lead young people to prefer not to engage in these conversations.^33,47

Recent conceptual and theoretical analyses have, however, highlighted the dynamic and complex process of end-of-life communication with adolescents; AYAs' level of awareness around the incurable nature of their disease may interact in a nonlinear and evolving way with their cognitive and emotional preparedness to engage in end-of-life conversations.⁵⁵ Younger, teenaged AYAs may especially grapple with this; while their cognitive capacity to consider end-of-life issues is still emerging, they may also have had minimal exposure to death and dying through their life experiences to date. Future work in developing clinician training and tools needs to build upon these advances in theoretical and developmental conceptualizations of AYAs' (and their families') readiness to engage in end-of-life communication. Future systematic reviews (including quality evaluations of the available evidence) will also assist in identifying important AYA-, family-, and clinician-level barriers to target in future high-quality research.

In addition to gaps in understanding AYAs' readiness, various barriers to the earlier introduction of palliative care concepts also exist from provider perspectives. These barriers include a lack of training and support to facilitate these processes, lack of time, and health care professional discomfort.^28,54 As an important next step in this field, research addressing these provider-level barriers to introducing end-of-life concepts (and care processes) will need to examine what models of training and other practice-based supports can enhance clinical care in these challenging scenarios.

Finally, research highlights the differences in care outcomes that can emerge according to whether end-of-life conversations are held earlier (e.g., before the last 30 days of life or not^35,36,38). However, little is known about AYAs' preferences for place of death, or the impact of actual place of death on AYAs' families. Studies highlight poorer psychological and grief-related outcomes for parents of young children who experience hospital rather than home deaths.⁵⁶ However, it is still unclear why poorer outcomes are experienced for hospital deaths; examining these outcomes in AYA populations is an important area for future inquiry. Indeed, it may not be the location of death in itself, but rather the preference-location match, which may be critical in determining psychological and grief-related outcomes. Future research examining end-of-life conversations should document AYAs' and families' preferences, and the extent to which the care that results is consistent with these, while understanding place-of-death outcomes within the context of evolving preferences across the end-of-life trajectory.

(2) Who: Ensure the wider multidisciplinary team is confident and adequately skilled to support end-of-life conversations with AYAs

A range of health care professionals are likely to be well placed to facilitate end-of-life conversations with AYA patients; regardless of their particular discipline, factors that are likely to support this process include having established good rapport with the patient and their family, and being comfortable with broaching emotional and/or difficult topics in the context of the clinical relationship. While the development of clinical relationships differs according to the individual provider and the unique AYA patient they are caring for, achieving good clinician-patient-family rapport is likely to rely upon establishing a sense of (mutual) trust between patient/family and clinician over time, and the clinician having a good understanding of that AYA's unique psychosocial needs, values, and priorities.

Some specialist AYA clinical teams have advocated that the minimum membership of the AYA palliative care team should be the following: an oncologist, a palliative medicine physician, a nurse trained in palliative care, a social worker, and a psychologist.⁵⁷ They recommend that teams maintain continuous communication regarding the AYA's end-of-life goals. The team should also take time to debrief and support one another as necessary to prevent clinician burnout.⁵⁷ The palliative care team can be enhanced through the inclusion of youth workers or religious leader/chaplain. The process of introducing end-of-life topics should ideally be led by the multidisciplinary palliative care team in an integrated,⁵⁸ concurrent manner for all patients with poor prognoses up-front, or disease recurrence,^28,50,51 and at the latest should be introduced once treatment has shifted away from curative intent.²⁹

Barriers and knowledge gaps

Supporting and training health care professionals from diverse disciplinary backgrounds to facilitate end-of-life conversations is a critical area for future research. As neither clinicians nor their young AYA patients typically wish to embark upon end-of-life conversations, silence and mutual avoidance can occur all too easily. Building skills and confidence among clinicians to navigate end-of-life communication in developmentally appropriate ways is likely to assist in bridging this gap.

Evidence indicates that the lack of AYA-specific education/training for clinicians around these issues may be a barrier to timely and effective end-of-life interactions, leaving many trainee clinicians inadequately prepared when they face end-of-life interactions.⁴⁶ To remedy this, gold-standard primary palliative care education should be introduced early and integrated throughout professional development,⁵⁹ and include a variety of training modalities, including utilizing experiential, online, and group didactic teaching strategies, shared learning between health care disciplines, and incorporating bereaved family members as educators (e.g., as panel members at conferences, or within small-group conversational training seminars with clinicians).⁴⁶ Future research identifying the core clinical skills providers feel they need further training in, and the training modalities that they feel will be most useful and relevant to them will be crucial to advancing these clinical efforts. Nuanced provider-based data will be needed to successfully develop and implement these types of training resources, as provider preferences for further professional development are likely to differ according to their discipline, experience with AYAs, and the clinical context in which they work. Future research will also need to address implementation problems associated with different health care providers facilitating end-of-life conversations.⁶⁰ The literature reviewed here suggests it may be important to AYAs and their families for these conversations to be facilitated by a trusted provider with whom they have good rapport; however, this may lead to tension in effectively integrating these conversations into routine care alongside many competing clinical demands.⁶⁰

(3) What: Tailor the content of end-of-life conversations to the individual patient, and the unique context of the particular time point the conversation is being introduced

Discussions should be individualized, while addressing key topics identified as important in the literature, such as physical, psychosocial, and existential (Fig. 1).^{8,29,37,45,46,53} AYAs with cancer do have preferences about their care at end-of-life, which may include a preference for being free from pain, dying at home, and for a “natural” death (the definition of which is unclear, but may involve not undergoing numerous invasive/painful procedures aimed at prolonging life without curative intent). With support from the health care team, preferences can be expressed and their preferences discussed early on, and revisited as disease, symptom, treatment-related, and psychosocial circumstances change across the cancer trajectory. This may lead to them being more likely to experience an end-of-life phase more consistent with their preferences (e.g., spending less time in the hospital and/or dying at home). AYAs are likely to have numerous concerns related to maintaining their quality of life and a sense of “developmental normalcy” that, given the opportunity, they may wish to discuss.⁶¹

Barriers and knowledge gaps (future directions)

Given the uniquely individual nature of the concerns each AYA, and family, may have in the end-of-life context, providing evidence-based guidance as to “which topics to introduce when” is likely to be challenging. However, one of the most significant gaps in this domain is research linking the potential impact of discussing various psychosocial and quality of life-related end-of-life topics on AYAs' psychosocial, family, and communication-based outcomes. Given that research has linked the discussion of medical/treatment-related end-of-life preferences to differences in the actual end-of-life care AYAs receive,^35,36,38 it stands to reason that AYAs who have the opportunity to discuss the psychological, social, existential, and quality-of-life-related aspects of their lives may also experience better outcomes in these domains. Future research should explore the impact of these discussions, and the impact of having them earlier in the treatment trajectory. In addition, research highlights the changing nature of AYAs' “readiness” to engage with end-of-life conversations⁵⁵; this further complicates the difficulty that health professionals face in determining which patients/families may be open to exploring end-of-life issues—and which may not yet be.⁶⁰ Further research is needed to develop evidence-based processes to assist in guiding clinicians to gauge AYAs' readiness in an age-appropriate, responsive, and sensitive way, to ensure that windows for introducing the range of end-of-life topics are not missed.

(4) How: Use structured advance care planning tools to scaffold conversations, and as a mechanism to facilitate communication between AYA patients, their families, and members of the multidisciplinary care team

Negotiating advance care planning conversations has been described as an “interactionally risky business”⁶⁰. Advance care planning documents may assist in scaffolding these conversations, enabling patients to clearly communicate their preferences to both health professionals and their family,^{10,11,37,61,62} and have been found to be helpful from practitioner, patient, and family perspectives.^{10,11,37,61,62}

The success of incorporating advance directive documents into an AYA's care may depend on the skills of the practitioner.⁴⁵ Guidance exists to support providers in using language to normalize conversations around end-of-life decisions and common concerns, to assist them to embark upon these discussions with their patients.^32,45

Barriers and knowledge gaps

The benefits and impact of using advance care planning tools to introduce end-of-life conversations among AYAs is an understudied, but growing area^{10,11,32,45,46,61–63}; however, the perspectives of health professionals and family members who may be involved with these conversations to varying degrees have to date only received limited attention. Relatedly, the clinical and ethical quandaries that occur when AYAs and their parents/families disagree about end-of-life preferences and decisions also warrant further attention. The potential role for specific and formal interventions in helping “broker” or facilitate important end-of-life conversations in the difficult context of family conflict remains to be thoroughly investigated. Finally, how best to approach and support end-of-life conversations with AYAs in the context of cultural and linguistic diversity is also an area where further guidance for clinicians would be helpful.^34,47–49

Conclusion

The literature on the role of communication within AYAs' end-of-life care is a burgeoning field, with considerable scope for future research and clinical work to improve this landscape. Best-practice standards of care guiding palliative care, including end-of-life communication, now exist in the pediatric setting.^28,51 Our review suggests that tailored end-of-life conversations involving the AYA should be led by a clinician they have a comfortable working relationship with, and repeated and revisited over time. The model articulated through Figure 1 suggests that the timing, content, and provider facilitation of end-of-life conversations with AYAs interact and are dependent on individual, familial, and sociocultural factors. Our model offers a framework for considering end-of-life communication complexities in the clinic, as well as testable research hypotheses. For example, future research will be able to clarify the impact of addressing different psychosocial end-of-life conversation topics (content) at an earlier stage (timing) on AYAs' psychosocial outcomes. A number of knowledge gaps remain, including how the timing and focus of these conversations vary across AYAs with different diagnoses, how disparities in AYA-parent preferences may best be resolved, and parent/family outcomes when an AYA dies at home rather than in hospital. The sensitive nature of these issues, and the vulnerability of AYAs and their families approaching the end-of-life phase, poses a challenge for researchers gathering traditional forms of evidence to guide practice in this space. To improve end-of-life communication experiences for AYA cancer patients into the future, clinicians and researchers need to carefully develop innovative ways to build the evidence base in this area.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research was supported by CanTeen Australia. Ursula M. Sansom-Daly is supported by Early Career Fellowships from the Cancer Institute of New South Wales (ID: 14/ECF/1-11) and from the NHMRC, Australia (APP1111800), as well as by a research grant from the HCF Foundation. Claire E. Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council (NHMRC) of Australia (APP1143767). Joanna E. Fardell is supported by The Kids Cancer Project. 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. This work was supported by the Intramural Program of the National Cancer Institute, Center for Cancer Research (Lori Wiener).