Abstract
Purpose:
Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15–39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned this was placing AYA patients' wellbeing at risk, we determined a cultural change was required and that the newly established AYA Supportive and Palliative Care (AYASPC) Service could facilitate this.
Methods:
The AYASPC Service conducted a 6-month quality improvement project aiming to increase its referrals from a baseline average of one per month to four per month, to increase confidence in making SPC referrals and to enhance appreciation for specialized AYA care. Interventions included formalizing an AYASPC referral pathway with broad indications, and educating clinicians on holistic AYA care, the AYASPC Service's model of care (MoC) and AYASPC referral benefits.
Results:
During the project, 27 AYASPC referrals were made. Referrals consistently exceeded the Service's baseline, and from 3 months onward exceeded the project target. Additionally, referrals were made earlier (29.6% at diagnosis), for a variety of cancer diagnoses with varied prognoses, and for indications beyond traditional issues of complex symptoms and end-of-life care. Clinicians also expressed greater confidence in supporting AYAs and making SPC referrals.
Conclusion:
In a brief timeframe, the AYASPC Service's innovative and adaptable MoC and project interventions sustainably improved AYASPC access and affected a positive cultural shift around AYA care and advocacy.
Introduction
Oncology clinical practice guidelines recommend adolescent and young adult (AYA) cancer patients (those 15–39 years of age) should have timely supportive and palliative care (SPC) engagement.1,2 SPC referral can occur throughout the AYA's cancer trajectory, regardless of prognosis, and is beneficial in supporting the unique psychosocial challenges AYAs face, to help optimize their health outcomes.1–5 However, multiple barriers exist for timely AYA SPC access, with referrals often occurring only in advanced cancer or at end of life.3,6–9 These barriers include clinicians feeling ill-equipped to address prognostic uncertainty with AYAs and families, to navigate their own emotional responses to managing seriously unwell AYAs and to know how best to introduce palliative care (PC) themes.10,11
By 2022, Liverpool Cancer Therapy Center (LCTC) in Sydney had no AYA-dedicated services, despite a growing local AYA population in one of the most socioeconomically disadvantaged, and linguistically and ethnically diverse health districts in Australia.12,13 Since 2010, the Australian Government had funded Youth Cancer Services (YCSs) to provide expertise for cancer patients 15–25 years of age.5,14 However, LCTC has no co-located YCS, and while a referral pathway exists with a regional YCS, local AYAs typically decline YCS referral due to existing appointment burden and preference for care provision at one site. Furthermore, from January 2016 to January 2022, of the 884 AYA patients referred to LCTC, only 74 (8.4%) were referred for PC input. These referrals were typically limited to symptom management and/or end-of-life support, and were often delayed, thus limiting opportunities for meaningful engagement. These referral patterns mirror other comprehensive cancer centers' findings. 15 Notably, YCSs currently do not have early SPC engagement as standard practice, nor has a best practice model for SPC integration in AYA cancer care been established. 3
To help address this deficit in specialized AYA cancer care, the AYA Supportive and Palliative Care (AYASPC) Service was established in 2022, comprising an AYA-trained PC physician, PC clinical nurse specialist, oncology social worker, hematology social worker, and AYA-specific clinical psychologist.
The AYASPC Service accepts referrals for patients 15–39 years of age, with oncology or hematology diagnoses, who have, or at risk of significant physical and/or psychological morbidity from cancer or its treatments. Referrals are accepted from diagnosis, regardless of prognosis, earlier referrals are recommended to build rapport and better appreciate each AYA's psychosocial context, and broad referral criteria are supported beyond typical indications of complex symptoms and end-of-life care (Table 1). The Service interacts responsively with AYAs whenever, however, and wherever they wish, aligning with existing hospital appointments, using telehealth, phone, and home visits where appropriate and with care continuity across inpatient, outpatient, and community settings. Formal AYASPC referrals are accepted following primary oncologist/hematologist and AYA consent, and the AYASPC team endeavors to work collaboratively with primary teams in AYA care.
Referral Indications Included in the Adolescent and Young Adult Supportive and Palliative Care Service's Referral Guideline
AYA, adolescent and young adult.
The AYASPC Service determined that addressing the local AYA cancer care gap was a priority, and that improving AYASPC Service access could be an effective approach to enhancing LCTC's AYA cancer care profile and AYA patients' quality of life.
Methods
A quality improvement (QI) project was employed to improve AYASPC Service access: “Improving AYA Oncology and Hematology Patients' Awareness of Supportive and Palliative Care,” was selected for the 2022 Sydney Partnership for Health, Education, Research, and Enterprise (SPHERE)–Stanford QI in End-of-Life Program, which provided mentorship and training in QI methodologies. The project team comprised the AYASPC Service's PC physician, nurse, and social worker, an oncology clinical nurse consultant and hematology clinical nurse consultant. The 6-month project was conducted from June to December 2022 in LCTC, where all team members worked.
The project's primary aim was to increase AYASPC cancer referrals, with secondary aims of improving cancer clinician awareness of specialized AYA care and confidence in SPC referrals. Learnt QI methodologies 16 informed the following, with the “A3” framework being utilized 17 : the team clarified the clinical problem as the vast majority of AYA cancer patients not having SPC referral despite the known benefits, and generated a “SMART goal” 18 of increasing AYASPC cancer referrals from a baseline average of one per month, to a target of four per month over 22 weeks (Fig. 1).

“SMART” quality improvement methodology.
The “current state” 19 of disjointed pathways by which AYASPC referrals occurred at baseline was mapped (Fig. 2), and root causes20,21 for this situation were deduced. Contextual changes (“key drivers”) 22 necessary to sustainably increase AYASPC referrals were clarified, including improved referrer confidence in discussing and referring to AYASPC, a clear referral process, improved clinician appreciation for specialized AYA care and SPC referral benefits, and minimizing additional appointment burden. These factors informed project interventions: (1) creation of an AYASPC Service referral guideline with broad referral indications (Table 1); (2) cancer clinician education covering AYA-related development, cancer specifics and communication, and the benefits and process of AYASPC referral; (3) targeted education of Cancer Care Coordinator nurses (CCCs) as patient navigators, including language options for discussing SPC referral with AYAs, families, and oncologists/hematologists; and (4) AYASPC Service promotion through email and digital media. These interventions were continually refined through an iterative process of seeking informal clinician stakeholder feedback throughout the project.

“Current State” (baseline) and “Target State” AYA Supportive and Palliative Care Service referral pathways in Liverpool Cancer Therapy Centre.
An LCTC data manager monitored data on total AYAs referred to LCTC at baseline (January 2016–June 2022), but only newly referred AYAs during the project (June–December 2022). AYASPC referrals during the same periods were monitored by the AYASPC Service medical lead, and cross-matched with AYA referral data monitored by CCCs during the project. Only AYAs newly referred to LCTC were actively monitored for whether or not they were referred for AYASPC, as monitoring all LCTC-registered AYAs was too labour-intensive for the time-bound QI project.
Approval through Liverpool Hospital's Human Research Ethics Committee was deemed unnecessary due to the study's QI nature. CCCs discussed SPC referral with oncologists/hematologists of all AYAs deemed appropriate, no AYASPC referral was declined, and all therapeutic interventions discussed and implemented by the AYASPC Service were in common practice, with no randomization occurring.
Results
During the project, 27 new AYASPC referrals occurred, from both existing LCTC AYA patients and those newly referred. From one month into the project, monthly AYASPC referrals consistently exceeded the baseline (one per month), and from three months onward, exceeded the four referrals per month target. There was a 2:1 female:male gender ratio in AYAs referred, with a range of ethnicities (all consistent with each AYAs' birth country), and with English the preferred language for all (Table 2).
Adolescent and Young Adult Supportive and Palliative Care Service Referral Characteristics During Quality Improvement Project Period
Additionally, referral pattern changes were noted: referrals were made earlier (8/27 [29.6%] at diagnosis), for both curable (40.7%) and incurable cancers (59.2%), from a wide variety of sources and for a broad range of indications (Table 2). During the project, all AYAs considered appropriate for referral by their primary teams were subsequently referred, except for one AYA who declined, feeling referral unnecessary at the time.
Regarding the project's secondary aims, informal feedback and direct observations highlighted greater clinician appreciation of specialized AYA care, increased collaboration with the AYASPC Service and greater confidence in discussing and initiating AYASPC referrals. Referrers reported feeling more supported in AYA management, including with broaching challenging discussions with AYAs and families around disease progression, treatment cessation, and prognosis. Furthermore, with earlier SPC engagement, clinicians felt that when transitioning management to PC was appropriate, this transition was smoother and less distressing for AYAs, families, and primary teams (Table 3).
Quotes from Informal Conversations with Stakeholders Held During the Project
AYASPC: AYA Supportive and Palliative Care; CCC: Cancer Care Coordinators.
Discussion
AYA cancer patients require developmentally appropriate, specialized care that supports their unique psychosocial needs.23–25 Timely SPC integration in AYA cancer management can facilitate this.1–3 However, suboptimal awareness exists around the benefits of AYASPC engagement in helping optimize AYA health outcomes. 26 This and multiple other barriers impact AYAs accessing specialized cancer care,6,27 and while Youth Cancer Services have been vital in addressing this, equitable access to AYA-specific cancer care across Australia remains complex. 28
As LCTC had no funded AYA cancer services, an innovative model of care (MoC) was required to start addressing this local care gap within current staffing and funding. SPC has a broad remit of optimizing quality of life through managing physical, psychological, spiritual, and social distress in life-threatening/life-limiting illness. As such, the multidisciplinary AYASPC Service proposed that, being embedded in LCTC, it would be well placed to collaboratively manage AYAs with, or at risk of, cancer or treatment-related suffering, and enhance AYA advocacy. However, timely AYASPC referral remained a challenge.
One major barrier to timely PC referral is ongoing misconceptions held by clinicians, patients, and families around PC purely addressing complex symptoms in life-limiting illnesses and terminal care. 29 How best to name PC services to reach those with PC needs, while not undermining the specialty's principles, remains contentious.30,31 “Palliative medicine” and “supportive care” have been variably adopted, the latter seen as potentially damaging to efforts to reduce euphemizing of death and dying language. However, compared with “supportive care,” “palliative care” is shown to be more frequently perceived as a referral barrier and more likely to negatively impact patient and family hope.30,32
Recognizing the burden of any cancer diagnosis during the AYA developmental period, the AYASPC Service was intentionally named to express the broad support provided to AYAs across diagnoses and trajectories, without minimizing its role in caring for AYAs with advanced and terminal malignancy. The Service's name also provides referrers with language, which is truthful but potentially more acceptable to AYAs and clinicians, so facilitating timely SPC referrals. In advanced or terminal cancer patients, contrary to clinician and family concerns that PC and advance care discussions negatively impact AYAs' psychological wellbeing, extensive evidence exists that, when introduced sensitively, AYAs find these conversations acceptable, wish to have them earlier, and want caregivers to know their end-of-life preferences.33–39
Traditionally, PC referrals occur for complex symptoms, advanced cancer or terminal care. 15 While these indications may be appropriate for older patients, 40 AYAs require broader referral indications with their developmental and psychosocial complexity impacting management. 24 Regardless of expected cancer trajectory, needs-based SPC engagement is a stated priority of AYA cancer stakeholders, including cancer survivors.33,41 SPC clinicians can provide broad support, including around adjustment to diagnosis and changing illness trajectory, health literacy, symptoms, complex psychosocial needs, supporting significant others and, when required, end-of-life care. 42 SPC also promotes AYA and family-focused care, ensuring their priorities guide management throughout treatment and supporting cancer clinicians in timely, developmentally appropriate communication around advance care planning. 7 Cancer clinicians' skills and confidence are highly variable in handling these discussions, 43 which are often delayed, or left to PC teams referred too late to build rapport with AYAs and families,33,44 thus limiting their quality.
Tangible outcomes of timely AYASPC integration include better management of cancer and treatment-related symptoms and so, improved treatment compliance; reduced AYA physical and emotional suffering; improved AYA psychological, educational, and vocational outcomes; and improved family wellbeing. SPC involvement can also help minimize futile treatments near end of life,8,45 optimize terminal care, and support the emotional and psychological wellbeing of the bereaved. 46
Various models have been proposed for PC integration in cancer care, including time-based (needs or trajectory-based), PC provider-based (primary health, oncologist/hematologist or PC physician), and setting-based (inpatient, hospice, or home). 46 The short timeframe between the AYASPC Service's inception and SPHERE-Stanford QI Program's commencement precluded assessing preproject local clinicians' perceptions of challenges in navigating PC discussions with AYAs and families, and timely AYASPC referral. However, similarly geared studies elicited common themes among AYA clinicians. These included challenges of “emotional proximity” and “sense of tragedy” when considering PC discussions with AYAs and families, how to facilitate AYA and family acceptance of PC, navigating clinical uncertainty, and questioning their professional skills and responsibilities in this space.10,11 Suspecting similar challenges for local clinicians, the AYASPC Service's MoC attempted to address these themes.
The MoC encourages need-based AYASPC referrals, regardless of prognosis, normalizing AYAs' fluctuations in physical and emotional suffering and prognostic uncertainty throughout cancer trajectories. Holistic referral criteria that are not based on prognosis and curability (Table 1), can ameliorate perceptions of PC as “end-of-life care” and by demystifying AYASPC engagement, can reduce clinician anxiety that introducing PC themes to AYAs and families may be unacceptable and/or negatively impact hope. Encouraging earlier referral facilitates the AYASPC Service's rapport building with AYAs and families, as well as trust building with primary clinicians through longer-term collaborative care, so clinicians feel less isolated in their “sense of tragedy” when caring for AYAs10,11 (Table 3). In addition, regarding clinicians questioning their capabilities in this context, the AYASPC Service's education endeavors support clinician upskilling and confidence in AYA care, while AYASPC collaboration in AYA management promotes shared clinical responsibility.
Due to the project's time limitations, pre-project formal assessment of AYA perceptions around SPC engagement was also precluded. However, research in AYAs with advanced cancer has elicited themes of emotional conflict and being “labeled” following PC referral. 47 The expectation is that, as shown in this research, AYASPC Service engagement, if introduced sensitively, will provide AYAs and families repeated opportunities for supportive discussions around normalizing these emotions. Furthermore, with cancer significantly impacting AYAs' psychosocial contexts, development, and milestones, the Service's approach of supporting AYAs whenever, however, and wherever they wish should further improve AYA acceptance of earlier SPC engagement, by supporting their priorities and sense of normality.
Improving timely AYASPC referral in LCTC pre-project appeared complex: clinician awareness of what “AYA” designated was limited, let alone appreciation of specialized AYA cancer care and earlier AYASPC referral. Aforementioned misconceptions around PC were apparent, some clinicians believing AYASPC referral was only appropriate for complex symptoms or when cancer treatment was exhausted, feeling referral otherwise would negatively impact AYA and family hope. LCTC's vastly greater older patient numbers meant promoting AYA cancer care could be problematic and finally, AYASPC referral pathways were haphazard.
This ostensibly complex clinical problem was simplified utilizing SPHERE-Stanford QI Program methodologies. 16 These intuitive tools helped define the clinical problem, determined a feasible “SMART” goal of increased AYASPC referrals (Fig. 1), clarified root causes for poor baseline referral numbers, and generated effective interventions. The project's aims of a fourfold increase in AYASPC referrals, improved clinician appreciation for specialized AYA cancer care and greater confidence in making AYASPC referrals were all achieved by project's end, demonstrating how well-informed QI projects can efficiently produce meaningful results. Since the project's completion, AYASPC monthly referrals have remained threefold or greater compared with baseline.
In a health district where 53% of residents are born overseas, and only 35% speak English at home, 13 as expected, multiple ethnicities were represented in the referred AYA cohort, but interestingly, English was the preferred language for all. This lack of ‘preferred language’ diversity may reflect that no referred AYAs were recent migrants or refugees but is unlikely to reflect the possible linguistic diversity in the larger LCTC-registered AYA group. AYASPC Service referral barriers to linguistically diverse AYAs are not implied though, as the Service's cross-matching verified that all AYAs newly referred to LCTC during the project who met AYASPC referral criteria were referred, except for one. This AYA who felt referral was unnecessary, identified as Australian with English as their preferred language. In line with core principles of holistic SPC, culturally sensitive care was provided to each AYA based on repeated clinical interactions that elucidated family, social, and cultural mores around cancer, medical decision-making, advanced illness, and dying.
Educational interventions were particularly impactful in the project's success: firstly, targeted education of CCCs, who function as patient navigators and intermediaries between patients and oncologists/hematologists, was pivotal to AYASPC referrals, empowering CCCs to recognize and advocate for AYASPC referrals using the referral guideline and reinforcing a more consistent referral pathway (Fig. 2). Patient navigators have previously been identified as key to earlier AYA psychosocial support engagement. 48 Second, AYASPC referral pattern changes suggest education on referral benefits not only increased referrals but reduced anxiety about referral, a significant cultural shift. Following educational interventions and more collaborative care opportunities, primary teams expressed greater confidence in AYA management and broaching challenging conversations (Table 3). This speaks to the potential of integrative AYA cancer/palliative care models that clinical guidelines promote. Finally, the educational interventions put AYA care on LCTC's radar, despite relatively small LCTC AYA numbers.
The project's interventions are sustainable, with the AYASPC Service's referral pathway, respectful collaboration in AYA management, and flexible approach with AYAs integral to its ongoing MoC. Furthermore, the Service liaises periodically with CCCs regarding AYA referrals and organizes regular AYA education with cancer clinicians to reinforce skills and confidence in AYA care.
While timely AYASPC referrals and an AYA cancer/PC integrative MoC may be broadly accepted, to be sustainably realized requires AYA champions at all health care management levels to navigate competing funding priorities.30,46 This QI project achieved systems change, including a perceptible LCTC cultural shift around AYA care and establishing the AYA Cancer Special Interest Group. The AYASPC Service was also showcased to the state's Cancer Institute as an innovative MoC, and with growing local AYA numbers and expected increasing AYA cancer referrals, has been supported in promoting the need for AYA-dedicated funding. Interestingly, it was never questioned as to why PC clinicians had adopted the AYA cancer advocacy role, although the approach was tacitly accepted.
The QI project's limitations were primarily due to its specific, time-bound nature. These included only actively monitoring for new LCTC AYA referrals with SPC needs, having only one measurable project outcome, and not conducting pre- and post-project assessments of AYA, family, and clinician perspectives on SPC engagement. To determine the need for AYASPC Service MoC adjustment, future AYASPC initiatives should include broadening monitoring to all LCTC-registered AYAs, including to better appreciate representation of gender, linguistic, and ethnocultural diversity in the local AYA group, to tailor care for all AYAs with SPC needs. Furthermore, it will be important to evaluate AYA and family satisfaction with AYASPC Service involvement, AYA health outcome measures following AYASPC engagement, and primary clinician satisfaction with SPC collaboration.
Conclusion
The AYASPC MoC is innovative in AYA cancer care in Australia, providing an adaptable template for earlier AYASPC integration in other centers. The MoC starts to address barriers to timely SPC integration raised in AYA integrative oncology/palliative care research. 15 Its multidisciplinary, flexible, need-based AYA engagement, broad referral criteria, and collaborative approach promote its broad acceptability. Finally, the QI project discussed demonstrates that with informed strategies, SPC services can affect meaningful shifts in perceptions of PC and promote the AYA cancer care agenda.
Footnotes
Acknowledgments
The author wishes to acknowledge the following staff of the Liverpool Cancer Therapy Center, Liverpool, Sydney, Australia: Leanne Almeida (Clinical Nurse Specialist 2 with the Palliative Care Service) for her significant contributions to developing the AYA Supportive and Palliative Care Service and the QI project presented, the center's Cancer Care Coordinator nurses for advocating for AYASPC referrals and Phan Sayaloune (Information Manager, Cancer Services South Western Sydney Local Health District), for assistance in baseline and ongoing AYA cancer referral data retrieval.
Author's Contributions
R.A.F.: conceptualization; data curation; investigation; methodology; project administration; supervision; visualization; and writing–original draft. Not applicable: formal analysis; funding acquisition; resources; software; validation; and writing–review and editing.
Disclaimer
Partial content of this article was included in an oral presentation and poster presentation at the 5th Global Adolescent and Young Adult Cancer Congress in Long Beach, California on June 21 and June 22, 2023, respectively, and at the Oceanic Palliative Care Conference in Sydney, Australia on September 15, 2023.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No specific funding was provided for the establishment of the AYA Supportive and Palliative Care Service. The associated quality improvement project, “Improving AYA Oncology and Hematology Patients' Awareness of Supportive and Palliative Care,” did not receive any funding, although was selected by a competitive expression of interest process for the 2022 Sydney Partnership for Health, Education, Research, and Enterprise (SPHERE)–Stanford QI in End-of-Life Program, which provided mentorship and training in specific QI methodologies.
