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Models of Care—There Is More Than One Way to Deliver

Sironi, Giovanna, MD*; Barr, Ronald D., MD, MBChB; Ferrari, Andrea, MD*

doi: 10.1097/PPO.0000000000000338
Review Articles

Adolescents and young adults (AYAs) with cancer constitute a particular group of patients with unique features, whose needs during and after treatment are poorly met. A standardized model of care for them has yet to be established, as neither the pediatric nor the adult oncology systems seamlessly fit their needs. Regardless of the setting in which they are treated, their health care providers should be aware of the impact that the disease and its treatments have on these especially vulnerable patients. Simple ways of improving the AYA experience should be considered: reducing isolation through connections with peers, adapting the staff's approach to the emotional and developmental needs of this age group, and modifying the hospital environment making it more age appropriate. Commitment of national governments is valuable; building and sharing international experience will accelerate advances in clinical care, education, and research. Further progress in the care of AYA cancer patients is still needed to improve their outcomes.

From the *Pediatric Oncology Unit, Fondazione IRCCS Istituto Nationale dei Tumori, Milan, Italy; and

Departments of Pediatrics, Pathology and Medicine, McMaster University, Hamilton, Ontario, Canada.

The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article.

Reprints: Andrea Ferrari, MD, Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Via G. Venezian, 1-20133 Milan, Italy. E-mail: andrea.ferrari@istitutotumori.mi.it.

Adolescents and young adults (AYAs) represent a distinctive group of patients with substantially different clinical (including psychological) needs compared with those of pediatric and adult patients with cancer.1–10 The challenges in caring for AYAs are underlined by the lack of a unanimous definition of the age group. While adolescence can be described as ranging from 15 to 19 years of age, with young adulthood beginning at the age of 20 years, the upper age limit still remains extremely flexible.1 Given the increasing incidence of cancer in young people with increasing age,11 determination of the AYA age span to be served is critical, as discussed below. The peculiarity of AYAs is well expressed by their unique characteristics, from the specific clinical and biological features of their cancers, as discussed elsewhere in this issue, to the specific and variable biology and psychology of the hosts, already burdened by the struggles related to this developmental period of life.3,6,12 Because of the common lack of awareness that cancer may occur in this age group and the complex pathway to diagnosis, AYAs have frequent difficulty in access to care, which is often unsuitable for their specific needs.1–4 These patients have been described previously as occupying a “no man's land” as they are no longer children, but still do not “fit” the typical adult oncology patient's profile.1–3,6,9 Numerous studies have emphasized how the characteristics of this age cohort combine adversely with the features of current health care systems.4

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THE CLASSIC MODELS OF CARE

For several decades, efforts have been made to improve outcomes for AYAs with cancer. With the scientific community paying more and more attention to this group of individuals, this has translated into a global effort, at least in high-income countries, to create AYA-dedicated programs and centers, founded at single institutions or on a national scale, with the collaboration of health care providers, charitable institutions, governments, and national organizations. These experiences have shown that the traditional health care models have proven inappropriate in providing age-suitable care for this patient group; hence, AYA reports of unmet needs are high.2,13

As a broad generalization, it is possible to say that pediatric and adult oncology services adopt different structural models (Fig. 1). The pediatric model follows a “family-centered” approach, with the patient being involved at different levels appropriate to developmental age.14 Children mostly have a limited knowledge of their condition, while parents are fully informed and are the main players in the decision-making process. Moreover, the extent to which the patients are informed and involved is guided by the parents. This usually determines the establishment of a profound relationship between the pediatric oncologist and the whole family.14 Pediatric oncology teams are composed usually of multiple members from different disciplines (pediatric oncologists, surgeons, radiation oncologists, nurses, nutritionists, other consultants e.g. from infectious disease, educators/teachers, psychologists, social workers, pharmacists, physiotherapists and occupational therapists, and child life specialists) working together and routinely addressing all aspects of the life of the patients and the families.2,3,13–15 This organizational model is usually well resourced, meaning that a high staff-to-patient ratio is ensured, thus guaranteeing considerable time dedicated to individual families, supporting and interacting with them.2,13

FIGURE 1

FIGURE 1

On a more medical basis, pediatric oncology usually delivers patient care according to standardized protocols or clinical trials, within national or international multicenter collaborative studies.2,13 Historically, pediatric oncologists have put a lot of effort into centralization of care in a limited number of referral centers to maintain the highest standards. Most pediatric oncology clinical trials are in phase III (randomized or risk-based) and aimed mainly at modifying the intensity and complexity of therapies to reduce acute toxicity and late adverse sequelae without compromising survival rates.13

Again as a generalization, the adult model is notably different (Fig. 1). Health care professionals working with adult patients tend to adopt a more classic “disease-centered” approach in which the main actor (the patient) interacts with a lead doctor. This doctor-patient relationship is based on confidentiality and consent, with the patients being independent and having an active role in the decision-making process; other family members or spouses interact only with the clinical team with the consent of the patient.2 Adult oncology programs are often “cancer site specific,” with a highly focused organization. Although a multidisciplinary approach has been used increasingly, this is often confined to the involvement of other medical “pathology-focused” personnel (surgeons, pathologists, radiation oncologists), while the intensive participation of nonmedical specialists, even in referral centers, still remains uncommon.13 Lower staff-to-patient ratios and fewer resources result in more limited opportunities and time for the medical staff to spend with individual patients. This is true for most adult oncology units, even though there is a high variability of models. It is unclear whether this issue influences quality of care and patient satisfaction. These units cope with older patients, frequently focusing on supportive and palliative care, with few patients having the opportunity to be enrolled in cooperative clinical trials, many of which are of phase I–II design in the search for new treatments.2,13

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AYA MODELS OF CARE—CURRENT AND EVOLVING

Because AYAs occupy the middle ground between children and older adults, it is not surprising that neither the classic pediatric nor the adult models of care are ideally suited to meet their needs. Experiences of successful projects have shown that starting AYA-specific programs is often a challenge, in part because the enthusiasm of proponents can be counterbalanced by various potential barriers (logistic, administrative, financial, cultural). The short history of AYA oncology teaches us that it is difficult to define an ideal “new” model of delivery of care for AYA patients. It is still unclear whether a new dedicated tailor-made model should be developed (and whether this is even feasible) or if adjusting existing models could suit the purpose of the effective delivery of care to AYAs.2–4,13

There is widespread agreement that care for this age group should be “patient centered,” aimed at acknowledging each patient's level of independence and maturity, still keeping in mind that interaction with parents, families, and/or partners is of critical importance. Crucial to developing a dedicated AYA model of care is maintaining the patients' normalcy, enabling them to continue living their lives as normally as possible without having to give up the possibility to experience the typical rites of passage of this age and therefore reaching the normal developmental milestones despite being diagnosed with cancer.13,16,17 The dogma of “normalcy” is a common key element of all projects dedicated to AYAs, and these young people themselves ask to be treated just like their healthy peers, as ordinary young people like everyone else, without pity and also without undue attention. However, it is worth noting the voices of AYA patients from the Youth Project of Milan, singing their Christmas Carol that says, “The real normal is the shape we give things.”18 This means that young patients are well aware of their clinical conditions, and they know that, although dedicated projects may offer an idea of normality and can set the scene, they themselves make the sense of what they are experiencing.

As a further key point, it is clear that a multidisciplinary approach to the care of AYAs is essential because of their complex clinical, including psychological, needs. The AYA health care team should include not only medical specialists (pediatric and medical oncologists, surgeons, and radiation oncologists), but also nurses, physiotherapists, psychologists, fertility/sexuality consultants, educators and teachers, social workers (well informed in labor laws and possibly insurance counseling), cosmetic experts, and spiritual counselors.2–4,13–17 Furthermore, as AYAs may be affected by various pathologies (more specifically approximately one-third of malignancies in teenagers are typical “pediatric tumors,” but the proportion of “adult-type tumors” increases with age), the multidisciplinary team should include both pediatric and medical oncologists, and clinical protocols for both pediatric and adult-type cancers should be available for young people treated within the unit.2–4,7–9,19,20 Just as examples, the use of pediatric protocols for AYA patients, regardless of age, affected by pediatric cancer types, has been demonstrated for various malignancies to have better outcome results.9,10,19–24 By contrast, pediatric oncologists may not be trained in treating tumors that are manifest typically in older adults but that may affect teenagers.2,6,9,19 Moving from theory, an environment designed specifically for young people and staffed by a skilled multiprofessional team expert in both the care of AYAs and their diseases and committed to working in a new way that recognizes the various needs of young people,2,9,13 to practical solutions, it remains challenging to develop a unit for AYA oncology with multiple specialties represented. Consequently, there is a growing need for dedicated AYA oncologists who are trained specifically to be expert across the AYA spectrum. Similarly, it is unclear whether providing centralized care in units specializing in a particular cancer type (or group of cancer types) may be better than focusing on units specializing in the care and needs of young people, with age-dedicated nonphysician staff (nursing, psychology, social work) and oncologists involved as “part-time” figures, with other responsibilities in their home departments, for example, in pediatric oncology or medical oncology.13,16

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KEY ISSUES IN DEVELOPING A PROGRAM DEDICATED TO AYAS WITH CANCER

The possible development of a dedicated model of care (Fig. 2) must consider that such programs and units should be adapted to local circumstances and to variations in medical and social culture, combined with the available resources. Experience dictates that acknowledging these issues has and will continue to generate an interesting variety of solutions.13

FIGURE 2

FIGURE 2

Most studies agree that identifying key elements should be taken into consideration and developed according to local habits while starting an AYA-specific program. Among these are the following:

  • (1) A clear definition of “who AYAs are” should be agreed in terms of age group before any local project is started. Lacking a universally shared definition, any age categorization may be considered arbitrary and should be tailored to the local situation, aims, and needs.25,26
  • (2) A multidisciplinary approach is fundamental, based on collaboration between adult and pediatric oncologists, and good results can be achieved only if there is genuine collaboration and exercise of shared leadership by both disciplines.
  • (3) Special training is required for the members of the multidisciplinary team, not only oncologists but also the nonphysician staff (psychologists, nurses, social workers, and others).14,24,27
  • (4) Availability of clinical trials for all tumor types occurring in this cohort is a high priority because the inadequate inclusion of clinical trials has been demonstrated to affect survival rates negatively in AYA cohorts. Any program not enabling patients to enter clinical trials should be considered inadequate.19–24,28
  • (5) Meeting the priority needs of these patients, by paying close attention to psychological support,13 as usefully exemplified by the stress-coping model proposed by Chesler and Barbarin29; sexuality and body image, so closely linked with self-esteem30,31; spirituality32 and palliative and end-of-life care, ensuring that these elements be treated as distinct even though symptom management is a shared component33; and transitions in care (Table 1).34
  • (6) Sufficient dedicated space, with simple attendant rules, not only to respect the need for privacy but also to facilitate interaction with peers and prevent the isolation of hospitalization, is essential, with a “social zone” and multifunctional areas with appropriate technical equipment including computers.2,13 On the other hand, some spaces should be thought of as “protected,” taking into consideration the fragility of young patients.35 Projects devised for them should make room for hope, beauty, and carefree attitudes, but should be protective and organized professionally.
  • (7) Specific events/projects that offer to young patients the opportunity for recreation and socialization are important, but even more, creative and artistic schemes such as those organized within the Milan Youth Project, which give voice to AYAs to tell their histories and enable the medical staff to gain a better idea of the inner world of the patients in their care, are a valuable complement to more conventional forms of psychosocial support.18,36,37
  • (8) Patient and family support and advocacy are required for a successful AYA program.38
  • (9) Research in addition to clinical trials should be fostered, both to increase the academic level of the program and to increase the acceptance of AYA oncology within the local context.39
  • (10) These programs may be seen as additional services and therefore as additional costs. Funding may be based on the rearrangement of current resources, support from charitable institutions, new public investment, or peer-reviewed grants.39 Charitable institutions have been of great importance in starting and developing many AYA programs, but these should not be considered sufficient because a sustainable model of care needs the support of the community, hospitals, and government. In planning a successful AYA program, an investment has to be made in engaging the relevant stakeholders (Table 2); decisive to the success of the program is having governments (local, regional and national) clearly commit to the project.40 The best example of this is the United Kingdom, where the development of national standards, listed in Table 3, and the consolidation of these instructions have translated into adolescents with cancer being mandatorily referred to specialized cancer centers, while young adults must be offered such a choice.41
  • (11) A program should demonstrate possible revenue growth, but this may be difficult (or it has been difficult) in many cases, so it may be easier to demonstrate the indirect benefit of an AYA program, such as the development of additional service previously lacking (e.g., psychological support, fertility preservation programs), the number of AYA patients seen at the referral center, the proportion of AYA patients enrolled in clinical trials and/or receiving fertility preservation, and the number of patients involved in various projects or receiving educational support. These outcomes can be evaluated through specific surveys and should be taken into consideration together with provider satisfaction, media and community recognition, and research and publications/grants in determining the added value of an AYA program.39
TABLE 1

TABLE 1

TABLE 2

TABLE 2

TABLE 3

TABLE 3

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EXPERIENCES ON RECORD

Multiple comprehensive programs that have focused on AYA cancer patient care have been developed during the years, involving numerous organizations, health care providers, academic societies, and governments with different models according to different local situations.2,13,42 There is significant unity in the objectives for AYA oncology around the world as reported from the United Kingdom,41,43 the United States,44 Canada,45 Australia,5,46 and Italy.8,39,47,48

In the United States, AYA oncology has developed into a recognized discipline, with rapid growth despite the absence of federal government funding.44 One of the earliest reports of an AYA program was from what was then called the Roswell Park Memorial Institute in Buffalo, NY.40 In the United Kingdom, the network of Teenage Cancer Trust units, now counting more than 30 units, stimulated the National Cancer Research Institute Teenagers and Young Adults Clinical Studies Group,43,49 whose primary goal is to ensure AYAs have equal opportunities to enter disease-specific clinical trials, and the BRIGHTLIGHT initiative.50 The latter is a nationally funded quinquennial research program, now faced with the challenge of assessing the “added value” of specialized AYA programs. Such services are not available in all countries, for example, in east Europe,51 although this issue is being addressed by the European Network for Teenagers and Young Adults With Cancer,52 which functions as a sort of federation of the ongoing European national groups, for example, the Italian Società Italiana Adolescenti con Malattie Onco-ematologiche, the French Groupe Onco-hematologie Adolescents et Jeunes Adultes, and the Spanish Adolescents with Cancer Committee linked to the charity Spanish Association of Adolescents and Young Adults With Cancer.42

Limited information is available on the care of AYAs outside high-income countries. A report from Brazil, which takes in consideration 271 hospital-based cancer registries across all 5 regions of the country, noted that almost 50% of 15- to 19-year-olds received their care in pediatric wards, but 96% of 20- to 24-year-olds were managed on adult wards.53 A recent review of the literature provided a clear consensus that AYAs undergoing treatment in adult settings have a negative experience, mainly attributed to feelings of isolation, perception of lack of empathy from the staff, and feeling of inappropriateness in the adult environment.54 Allowing AYAs to voice and prioritize their needs, as in a recent survey from 25 countries in Europe,55 provides a guide to improving the care given to this age group in adult cancer centers, as demonstrated by the Princess Margaret Hospital in Toronto, Ontario, Canada.56

Among the various experiences around the world worth mentioning, we may report here the following:

  • In the United States, a Progress Review Group was launched in 2006 as a result of a joint initiative of the National Cancer Institute and the charity LiveStrong, defining the survival gap and other inequalities between AYAs and children or adult cancer patients. Several guidelines, education programs, and national initiatives have been developed: the National Comprehensive Cancer Network has provided clinical practice guidelines for AYAs, and the National Clinical Trials Network has instituted AYA committees in both the pediatric and adult clinical trials groups. The AYA local programs have increased in both pediatric and adult hospitals.42,44,57,58
  • In Australia, the government started recommending the establishment of specialized adolescent cancer care units in 2005. Soon afterward, Cancer Australia teamed up with CanTeen, establishing the National Service Delivery Framework for Adolescents and Young Adults With Cancer, which outlined the essential features of a model that needed to be adaptable to each jurisdiction. Local AYA projects have been opened each with a multidisciplinary team, which works across both the pediatric and adult sectors. Furthermore, the University of Melbourne has coordinated a postgraduate diploma program in AYA oncology.46,59
  • In Canada, a national Task Force was formed in 2008 funded by the Canadian Partnership Against Cancer, which led to the formation of different working groups that addressed the priorities in AYA oncology. The result of these reports was the implementation of guidelines and recommendations very similar to those developed by the Progress Review Group in the United States. The Royal College of Physicians and Surgeons has approved a national postgraduate training program in AYA oncology.45,60,61
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CONCLUSIONS

Developing a dedicated model of care for AYAs requires consideration of many factors revolving around the patients, existing service, and host institutions. Measuring the success of AYA cancer care remains challenging and needs to acknowledge the heterogeneous population affected, a mixture of teenagers with young adults on the threshold of independence.

The crucial elements of success in these programs include access to an array of health professionals who have expertise with AYA cancer patients, who are part of a multidisciplinary team that can provide coordinated care inclusive of psychosocial support, and who are aware of the importance of providing age-appropriate information.

Regardless of the setting in which the program is developed, whether it is in a pediatric or adult oncology center, existing guidelines and practices should be considered and followed. Local resources should be exploited to better understand what model of care will work best in a given location, while working toward developing national and international standards and practices. Successful care of AYAs imparts a sense of ownership among teenagers and young adults and should be driven by their voice and their needs.

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Keywords:

adolescents; adult-type tumors; model of care; pediatric cancer; pediatric oncology

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