Models of care and Specialized Units

contents

21.1 introduction. . . . 341 21.2 aims of care and the Patient Pathway. . . . 342 21.3 teenagers and young adults

Have Special needs.. . . . 342 . 21 3 1. What.do.Young.People.Say.They.Need?. 343 21.4 developing a Pathway to Meet the needs of

teenagers and young adults . . . . 344 . 21 4 1. .Centralization.of.Care.and.Access.to..

Clinical.Trials. . . . 344 . 21 4 2. .Improving.Psychological,.Social,.and.

Educational.Support. . . . 344 . 21 4 3. .Cancer-Specific.or.Teenagers-and-Young-

Adults-Specific.Multidisciplinary.Teams:..

is.There.a.Conflict?. . . . 344 . 21 4 4. .What.Might.a.Single.Pathway.for.Teenagers.

and.Young.Adults.Look.Like?.. . . . 345 21.5 an action Plan For teenagers and

young adults With cancer. . . . 346 . 21 5 1.. Past.and.Current.Practice. . . . 346 . 21 5 2. Patterns.of.Care. . . . 346 . 21 5 2 1. Under.15.Years.of.Age. . . . . 347 . 21 5 2 2. Aged.15.to.19.Years.. . . . 347 . 21 5 2 3. Aged.20.Years.and.Over. . . . 349 . 21 5 3. .Paradigms.of.Care,.Communication,. .

and.Interaction. 349

. 21 5 3 1. Children’s.Teams.. . . . 349 . 21 5 3 2.. Adult.Teams . . . . 349

. 21 5 3 3. Teenage.and.Young

. . Adult.Teams . . . . 350 . 21 5 3 4.. .Teenage.and.Young.Adult.Units.

and.Teams . . . . 350 . 21 5 3 5. .Virtual.Units.and.Peripatetic.

Teams. . . . 351 21.6 conclusions.. . . . 351 references . . . .352

21.1 introduction

This chapter is based on the premise that services can, and should, be reorganized in such a way as to better meet the many and varied needs of teenagers and young adults with cancer. Cancer in adolescence is relatively rare and yet presents challenging management prob- lems, both medical and psychosocial. The context for proposing change is the perception that traditional models of care are not meeting these needs adequately.

In the United Kingdom, a national charity, the Teenage Cancer Trust (TCT), was set up originally with the explicit aim of championing the needs of teenagers with cancer, principally by promoting the concept of, and providing capital for, specific inpatient facilities. Several such sponsored units have opened in major cancer centers during the past decade, yet there has been limited formal evaluation of these centers, and the concept of such units remains the subject of professional medical controversy [1]. To some extent, controversy exists because evidence has not been sought formally and because some clinicians doubt the need to consider teenagers and young adults as an identifiable and separate group, believing that cancers occurring in this group should be managed within a more traditional model of care.

In this chapter, we examine the case for considering the special needs of teenagers and young adults with cancer. We consider which elements of care should be within a teenage-and-young-adult-specific patient pathway; describe how models and paradigms of care are evolving to meet these needs; address some of the barriers or obstructions to change; and describe how these might be overcome.

Models of care

and Specialized Units

Ian.Lewis.•.Sue.Morgan

21.2 aims of care and the Patient Pathway The aims of care for all patients, irrespective of age at diagnosis or type of cancer, should be to maximize the chance of survival whilst minimizing the physical, psychological, and social cost of survivorship.

In order to achieve this objective, a patient pathway that provides the key elements of diagnosis and treat- ment must be developed, as exemplified in Fig. 21.1.

The first step is the referral process, which, in the United Kingdom, is most commonly from general practitioner to general physician, surgeon, or pediatri- cian, followed usually by further referral to an oncolo- gist. It is clear that this period should be as short as possible.

The next element is the formal medical evaluation of the patient for histological diagnosis, disease stag- ing, and the assessment of underlying health status, including comorbidity. The following step incorpo- rates the need to inform the patient and family about these findings, to advise and decide on an initial treat- ment plan, and to discuss entry into a clinical trial if appropriate. This presumes an informed consent pro- cess.

Treatment then commences, varying considerably depending on the diagnosis and staging, but for many patients will include one or more of chemotherapy, radiotherapy, or surgery. For some, it may continue for many months or even years. This all demands close collaboration and multidisciplinary teamwork.

Patients require a wide range of supportive care that is both medical (to treat or prevent major treatment- related effects) and psychosocial (to help and sustain them and their families through immensely stressful and challenging experiences). At the conclusion of successful treatment, patients embark on appropriate follow up, having completed an end-of-treatment evaluation, proceeding thereafter to assessment and management of any long-term or late effects of treatment. Sadly, treatment might be unsuccessful initially, or disease may recur either during treatment or some time after its completion. Usually patients then require further evaluation of disease status and discussion about a new therapeutic strategy. For many, this will involve further therapy with cura- tive intent but, for some, further treatment will not

be curative and they embark on a palliative course that may be brief or may last for months or even years.

This path, however, is rudimentary as it provides little detail of the specific requirements for any one patient and needs to be expanded to identify the ser- vices that may need to be provided at each of these steps. Pathways for children differ from those for adults, and there are differing pathways for different cancer diagnoses.

21.3 teenagers and young adults Have Special needs

Working with teenagers and young adults can be both stimulating and challenging. These young people are experiencing a period of life when they are initiating major tasks including establishing their personal iden- tity, experiencing independence, making occupational choices, and developing philosophical and lifestyle options.

Periods of hospitalization and illness may contrib- ute to increased dependence on parents, who quite naturally feel protective and may want to take over care. Reliance on family for financial support and on health-care professionals for treatment contributes to

Patient.pathway.–.the.minimal.model Figure 21.1

this loss of independence. The effects of chemotherapy, surgery, or radiotherapy will affect identity and self- esteem [2], which, combined with effects on fertility, may also influence the young person’s sexual confi- dence. Peer contact will decrease at a time when peer group acceptance is crucial.

Illness and treatment changes the lifestyle of teen- agers. Education can be disrupted and future occupa- tional plans may be changed, either because of therapy or because of a real or perceived threat to life.

21.3.1 What do young People Say they need?

In designing and delivering services, it is essential to take the experiences and views of patients and their carers into account. It is imperative that the young people are given a “voice and a choice” in their care, as this helps to inform and underpin everything that is developed for them. Given the opportunity, young people will say what they want from services and those who provide them. They are an interesting, challeng- ing and rewarding group and will “tell it as it is!”

There is an informative, although not extensive, lit- erature that reveals some insights into the concerns of young people with cancer and how their management might be improved. Major elements of the direct can- cer experience that concern young people include the possibility of disease recurrence, changes in body image, personal relationships with friends, family or partners, reintegration into education, and job pros- pects [3–6]. Whilst some issues are cancer specific, others are shared by many young people who do not have cancer. Teenagers and young adults with cancer need to be seen firstly as young people and only then with cancer.

One key element identified in several publications is the requirement for clear, appropriate, and compre- hensive information at all stages as this allows for par- ticipation and a level of control in decision-making factors that relate positively to self-image and help with adjustment [7–9]. Patients need to be able to make choices for themselves.

The qualities of health professionals that young peo- ple favor to communication have been identified [7].

These included the ability to listen and to express con- cern, professional expertise, and honesty. In contrast,

an impersonal manner, excessive jargon, haste, and a perceived generation gap impaired communication.

There are not many studies of young people’s views of health services. One study assessed the views of young people about their care [10]. In addition, evi- dence has been gathered at three TCT-sponsored events held between 2001 and 2004 that have brought together several hundred young people with cancer who have experienced treatment in a range of set- tings. The views expressed by these young people seem consistent. In ranking those factors deemed to be essential, the most important was to “get better”

and a desire to return to normal. A large majority indicated their willingness to travel long distances to get the necessary expertise and environment. Young people want to have treatment directed by profes- sionals expert in their disease, preferably in a special- ized center that caters specifically for their age group.

To know that they are not the only young persons with cancer can have a very positive impact on their journey, and many strong bonds are formed in the process. Peer support can be vital to self-esteem in the pursuit of normality. This need was followed by the desire to keep up with their education in order to maintain parity with their peers who do not have cancer.

Wherever possible, young people want to be pro- vided with their own space, so that they can mix with their own peer group in an age-appropriate environ- ment and have experienced professionals who can guide them expertly in order to help them with their individual needs [8].

Whenever asked, young people want to be able to

access family and friends and, if possible, to be at home

or close to home. This desire is outweighed strongly by

the willingness to travel to specialized centers if this

means that outcome might be improved. Finally, an

important factor, which has been identified often but

for which evidence is sparse, is the widely expressed

perception of significant and avoidable delay in the

initial diagnosis and referral. Many young people, par-

ticularly those with solid tumors, provide stories of

numerous attendances and assessments before referral

for investigations leading to a correct diagnosis. This

causes them enormous concern, often expressed as “I

don’t want other people to experience this.”

21.4 developing a Pathway to Meet the needs of teenagers and young adults 21.4.1 centralization of care and access to

clinical trials

There appears to be fairly strong evidence from pediat- ric oncology that centralization of care improves out- come for rare tumors or those requiring complex treat- ment [11–13]. Further evidence has been published to support the benefits of specialized cancer care in adults [14].

The specific evidence for teenagers and young adults is mixed. Patients with testicular tumors have better outcome with centralized care [15]. In a study of teen- agers and young adults with leukemias in the United Kingdom presenting between 1984 and 1994, increased survival over this interval was demonstrated and it did not vary with category of hospital [16]. This study was undertaken before the development of specific Teen- age and Young Adult units. In contrast, evidence from the United States of treatment of acute lymphoblastic leukemia [17], and from Germany, of the treatment of Ewing sarcoma [18], suggests that centralized care with an intensive pediatric regimen is better. A study of teenagers and young adults aged 15 to 24 years with cancer in Yorkshire between 1984 and 1994 demon- strated differences in outcome between geographical areas [19]. Whilst the exact reasons are unclear, it is possible that one factor may have been different pat- terns of care, as patients from the area with the poorest outcome were least likely to be referred to the special- ized center. There is also evidence to suggest that cen- tralized care reduces physical late effects. A study of children with Wilms tumor demonstrated that those not treated in specialized centers might be overtreated [20].

There is similar literature to support the contention that patients entered into clinical trials often have higher survival rates, especially for less common can- cers. Trial entry has never been found to be associated with lower survival rates [21]. There is therefore some evidence supporting the recommendation that cen- tralized treatment and access to clinical trials should be important elements of care for teenagers and young adults in order to maximize survival.

21.4.2 improving Psychological, Social, and educational Support

Psychological, social, and educational outcomes are important factors that must be taken into account when planning services for teenagers and young adults.

It is intuitive that these particular outcomes are likely to be improved if teenagers and young adults receive care in an environment designed for young people, where they can meet others of similar age, and where staff are expert in and can focus on the needs of ado- lescents. However, there is little firm evidence to sup- port this belief and psychosocial outcome studies are needed to compare results of teenagers and young adults treated in different settings. In the absence of clear evidence of better outcome, it would be reason- able to measure benefit by comparing process out- comes between traditional and new models. These should include comparison of rapidity of diagnosis, the clarity and quality of information received, choices about treatment, access to clinical trials, availability of psychological and peer support, facilitation of educa- tion, and existence of facilities designed for young people.

21.4.3 cancer-Specific or teenagers-and- young-adults-Specific Multidisci- plinary teams: is there a conflict?

In expounding our view of the needs of teenagers and young adults, it is clear that a tension continues to exist between providing centralized care in a unit specializ- ing in a particular malignant disease and in a unit spe- cializing in the care and needs of young people. To some extent, we view this tension as spurious, perpetuated by different factions of health-care professionals. It might be thought that the best solution for young people would be to create an environment that combines these elements to ensure that teenagers and young adults benefit from both. This requires individual clinicians and groups to commit to working in new ways, thereby providing multidisciplinary teams expert in both the specific cancers and the needs of young people.

Whelan uses similar arguments to promote the case

that, where possible, the optimal model is a unit

designed specifically for young people and staffed by a

skilled multiprofessional team expert in both the care of teenagers and young adults and their diseases [22].

This is a challenging agenda, given that teenagers and young adults develop a wide range of cancers that encompasses both pediatric and adult types of tumors and that pediatric and adult teams currently have very different ways of working. Adult oncology multidisci- plinary teams are “site specific” and shaped by the disci- plines required to treat the person with a specific form of cancer. The volume of patients is high and time for indi- vidual patients and families at a premium. The pediatric model is somewhat different, having a philosophy of care that is family centered rather than disease centered, and tends to be more holistic in its approach. There is usually a lower volume of patients, thus allowing more time for team meetings and reflective practice.

Nevertheless, bringing those from pediatric and adult backgrounds together to form a Teenage and Young Adult multidisciplinary team should be a core aim if teenagers and young adults are to have their needs for disease-related expertise and psychosocial support met appropriately. This should be a place for referrals, discussion and dissemination of knowledge, identifying patterns of care, and should become the focus for developing a local database concentrating on this age range. The Teenage and Young Adult multidis- ciplinary team needs to develop close relationships with several site-specific teams so that additional expertise can be harnessed for the benefit of patients.

This provides an opportunity to develop a forum for discussing the many ethical issues and treatment con- troversies that occur in these patients.

What should emerge eventually is a single, equitable model of delivery of care, tailor-made to these young patients and their family/carers, allowing equal access to expert diagnostic, treatment, and support services regardless of their disease or referring physician.

21.4.4 What Might a Single Pathway for teenagers and

young adults look like?

Currently there is little predictable in the experiences of teenagers and young adults with cancer and many elements of chance in any one patient’s journey. A pathway should be evidenced-based if possible and take into account the expressed wishes and experience of those undertaking the journey. Figure 21.2 is an attempt to unify these factors into a single pathway based on the input of young people and incorporating competencies and requirements rather than particular places, people, or professional interest groups.

The first element of this pathway identifies the need for early diagnosis. This imposes responsibility on young people themselves to learn how to recognize symptoms or signs of concern and then seek appropriate profes- sional help or advice. It demands also that health-care professionals listen to young people and make early referrals for specialized assessment. Examples of these circumstances include increasing public awareness amongst young men of the importance of testicular self- examination, and providing evidence that patients are being referred rapidly from primary or secondary care to specialized cancer services with a reduction in time from initial symptoms to commencing treatment.

Much of the rest of the pathway might appear self evident, yet the evidence from the literature, and reports of many young people’s personal experiences, tell a very different story.

As outlined earlier in this chapter, young people find themselves managed by a wide range of medical teams, many of whom have little understanding of their needs. Both in the United States [23] and in the United Kingdom, only a minority appear to be given the opportunity to participate in clinical trials.

Patient.pathway.–.the.expanded.model Figure 21.2

For many patients it is not known if late effects of therapy are taken into account appropriately when treat- ment is planned. It is recognized, however, that many young people report not having adequate information about fertility risks at the time of starting treatment and many “adult” treatment protocols pay little regard to cardiac, renal, and audiological toxicity monitoring.

Many young people report not being encouraged to continue with their education through treatment and are sometimes actively discouraged by well-meaning professionals. In addition, there are often less than adequate resources available to “adult” teams to pro- vide the level of psychological and social support needs of teenagers and young adults.

It is perhaps for these reasons that there has been such strong pressure for and movement towards pro- viding specialized facilities and health-care teams.

Young people need to be offered the opportunities to choose, if they wish, to have their management coordi- nated by a professional team that is expert in young people and in the cancers from which they suffer. They should have access to a team that has developed age- and developmentally appropriate methods of commu- nication, and which can provide necessary support.

They should be able to undergo treatment in facilities that meet their very particular needs where they can meet other young people similarly affected, and where the needs of parents, partners, family, and friends can also be addressed. They should be given the opportu- nity to spend as much time as possible at home, or close to home, whilst still receiving the benefit of expert supervision and access to clinical trials.

21.5 an action Plan For teenagers and young adults With cancer

In the United Kingdom there is formal recognition by government and professional organizations that adoles- cents have special health needs [24–26]. There have been similar formal recommendations specifically for young people with cancer with the Expert Advisory Group in Cancer to the Chief Medical Officers of Eng- land and Wales recognizing these needs and recom- mending the formation of specialized units for adoles- cents [27].

Despite this strong recommendation, there was, and remains, little understanding in the health-care community of what this might mean and how to pro- ceed. The original focus, as proposed by the TCT, was for separate facilities and the provision of physical areas or units for young people within institutions, with the idea that teenagers and young adults would continue to be managed by their current health-care teams. There was no broad recognition that staff might need special training or development in order to meet the particular needs of teenagers and young adults with cancer, or that it might be necessary to develop specialized teams.

For those who set out on this path, the best hope of success appeared to lie in encouraging pediatric and adult disciplines to work together. There were threats to many entrenched beliefs and ways of working.

Developing services for teenagers and young adults with cancer has been challenging and fraught with dif- ficulties, most obviously inertia, or even obstruction, from professional colleagues, financial constraints within institutions, and a lack of understanding by commissioners of healthcare of the need for change.

Despite these barriers, there has been a notable change in the climate such that this agenda is moving forward at a reasonable pace into a slightly less chilly, and at times even warm, atmosphere.

21.5.1 Past and current Practice

In discussing how far we have moved down the road toward an ideal pathway for all teenagers and young adults with cancer, it will help to describe factors that influence current practice. These include patterns of how, where, and by whom teenagers and young adults are treated at present. This focuses largely on practice in the United Kingdom, where it is apparent that teen- agers were, and are still, subject to a lottery in which decisions about referrals and patterns of care have developed in an apparently ad hoc manner.

21.5.2 Patterns of care

These vary for different ages and diagnoses and are

depicted pictorially for several diagnostic categories in

Fig. 21.3.

21.5.2.1 Patients under 15 years of age In the United Kingdom, nearly all children and young people below 15 years of age are now referred to one of the 22 major United Kingdom Children’s Cancer Study Group (UKCCSG) pediatric oncology centers for management. This has been a progressive change.

Prior to the mid-1970s, when pediatric oncology began to be recognized as a separate specialty, most children received their treatment locally, under the care of general pediatricians or surgeons. Following the establishment of children’s cancer centers, there was a rapid change in referral patterns such that, by the early 1980s, the majority of children aged 0–9 years were treated centrally.

Interestingly, it took up to a decade longer before the majority of young adolescents aged 10–14 years achieved similarly high referral rates to children’s can- cer centers. As an example, in the period 1992–1994, only 58% of those aged 13 to 14 years and 73% of those aged 10 to 12 years were registered with UKCCSG cen- ters, compared to 85% of those aged 0–9 years.

Although never formally analyzed, it is now accepted that, during this time, adult specialists were treating many young teenagers in adult settings. There was only gradual and sometimes grudging acceptance by these specialists that young people would gain benefit from being treated in an environment more generally designed for them, where staff were more likely to understand their developmental, psychological, edu- cational, and social needs. Perhaps more importantly, pediatric oncology centers and teams also became more expert in treating those cancers occurring most commonly in this age group and providing patients with access to appropriate clinical trials.

21.5.2.2 Patients aged 15 to 19 years

Throughout the past 20 years, there has been a small but increasing number of young people over the age of 15 years managed by pediatric oncology teams. This group can be divided largely into three.

The first consists of patients diagnosed before the age of 15 years and treated in a children’s cancer center,

Current.patterns.of.care .Number/Yrs.refers.to.

approximate.number.of.expected.cases.in.the.

United.Kingdom.by.5-year.age.band Figure 21.3

who suffered a relapse as an older teenager or young adult. These young people and their families often request treatment in a familiar environment by the team known to, and trusted by, them.

The second group is made up of patients over 15 years newly diagnosed with cancers deemed to be

“pediatric” in nature, most commonly bone sarcomas, acute lymphoblastic leukemia, or the rarer diagnoses in this age group of embryonal tumors.

The third group comprises patients aged over 15 years but deemed to have “pediatric” needs. In some geographical areas, formal service guidance has included the requirement that patients of 16 years, or in full-time secondary education, be treated in a chil- dren’s setting. Elsewhere, the direction of referral has been determined by the referring clinician. The rea- sons given why older teenagers are referred to pediat- ric centers vary, but are often accompanied by a per- ception that the young person is relatively immature.

This can be determined often by the size of the young person – a 6-foot-tall 15-year-old boy being thought capable of receiving treatment in an adult environment whilst a 5.5-foot-tall 17-year-old might be deemed to be treated more appropriately within a children’s ser- vice. The direction of referral often takes place without any structured assessment of educational capability or social support mechanisms, although the numbers in this age group referred to pediatric teams have been small. In 1995, less than 100 young people of 15 years or over were registered as being treated at UKCCSG centers. Since then the number registered has increased but, as there has been also a growth in the number of units designed specifically for teenagers during this time period, it is not possible to disentangle those referred to children’s teams from those referred to Teenage and Young Adult units that happen to be colo- cated with pediatric oncology units.

adult Oncology teams

The majority of young people over 15 years continue to be managed by teams whose work is mostly with older adults. This is often determined by the patho- logical diagnosis, but a range of factors, some of them more rational than others, have determined the team taking the lead in treating young people.

As an example, a young person with a lymphoma may be referred to and treated by a variety of teams.

Most patients with lymphoma are managed by clinical hematology teams, but a substantial number are man- aged by medical oncology teams, depending on the setting or personal interest of the clinicians involved.

The type of team can vary between, or even within, individual hospitals. Many young people are referred to major cancer centers, but a large number continue to be managed in more local settings where a teenager with cancer is a relative rarity.

Adult teams treat most young people with sarcomas or germ-cell tumors, although patterns of care vary. The

Paradigms.of.care Figure 21.4

adult oncology community has demonstrated clearly the value of centralized treatment for testicular tumors in young men [15] and nowadays, structured multidis- ciplinary teams within cancer centers manage the majority. In contrast, many young women with ovarian tumors are managed by predominantly surgical gyne- cological teams, often in district hospitals.

There is a similar pattern for sarcomas. In England and Wales, the majority of young people with bone sarcomas have their diagnostic and definitive surgery in one of two specialized surgical centers, with adju- vant chemotherapy delivered in pediatric, medical, or clinical oncology settings, usually in cancer centers. In contrast, soft-tissue sarcomas are often investigated initially and treated in district hospital settings by sur- gical teams. They may be seen in cancer centers or by specialized teams only if deemed to be more complex or if disease recurs.

Epithelial tumors appear to be managed mainly in local units. In a study of patterns of referral for young people aged 15–23 years in Yorkshire (United King- dom), only a small proportion were treated in a hospi- tal not in their own district [28]. This implied that only the minority of carcinomas were referred to special- ized centers. Nasopharyngeal cancer and breast can- cers were referred more frequently than other epithe- lial cancers, reflecting the importance of radiotherapy in accepted management. There is little evidence in the literature to suggest that patterns of care have changed significantly in more recent years.

21.5.2.3 Patients aged 20 years and Over Treatment for young people over 20 years is generally very similar to that observed in those aged 15–19 years, with the majority being managed in adult units and with very few, if any, being managed in children’s ser- vices. There is a perception that a small but increasing number of young people under 30 years old are being managed in Teenage and Young Adult Units.

21.5.3 Paradigms of care, communication, and interaction

There are quite marked differences in how teams from differing disciplines interact with patients, and these

can have a notable effect on how relationships and trust develop between young people, their families or partners, and the professional teams. These differences are illustrated in Fig. 21.4.

21.5.3.1 children’s teams

Pediatric professionals work within the classic triad of professionals, parents, and patient. Clearly, very young children are not able to express complicated ideas ver- bally and, whilst they can be enormously expressive in several ways, most of the complex discussion and deci- sion-making tends to take place between professionals and parents or carers. Pediatricians and children’s nurses are trained to observe and listen to children so that some assessment of their views can be made. As children get older, their contribution to decision-mak- ing becomes more apparent, although decisions and discussions remain an intricate process in which par- ents’ views tend to predominate.

Pediatric oncology teams have been relatively well resourced, with a high staff:patient ratio. A culture of multidisciplinary and multiprofessional working has become embedded into practice, which should be fam- ily-centered in approach. It is axiomatic that this approach combined with extensive multicenter, national, and international collaboration in the devel- opment of clinical trials and other studies, has been the reason why advances have been incorporated rap- idly into pediatric oncology practice, thereby improv- ing patient outcomes.

21.5.3.2 adult teams

Professionals working with adults who have cancer

tend to work within a more classical medical model of

a lead doctor interacting directly with the patient. This

doctor–patient relationship is at the core of practice

and is based on confidentiality and consent. The patient

rather than the family is at the center of this particular

care paradigm and other family members or partners

interact with the professional team largely through the

consent of the patient. Medical, clinical, and hemato-

logical oncology practice tends to be strongly medi-

cally led with other professionals providing a support-

ing role. Historically much of the focus of adult teams

has been on older patients and there is much logic in this as the number of older patients who develop can- cer is large. The emphasis has been often on treating with largely palliative intent whilst paying particular attention to unwanted acute side effects.

In contrast to pediatric oncology, resources have been more stretched and staff/patient ratios smaller.

This implies less time for complex interaction and less reliance on professional support. The proportion of patients entered into multi-center clinical trials is much lower, although increasing this number in adults with malignant disease is a key objective of the National Cancer Research Institute and Network.

21.5.3.3 teenage and young adult teams Patterns for teenagers and young adults with cancer are really only just emerging but the evidence base is starting to increase. It is clear that teenagers and young adults do not fit easily into either of the classic pediat- ric or adult paradigms of interaction.

Cancer nearly always interferes with normal physi- cal and psychosocial developmental processes of young people. It is paramount, therefore, that professionals dealing with teenagers and young adults develop knowledge of and sensitivity to such issues, whilst rec- ognizing that considerable flexibility is required to meet the needs of each individual.

This requires an approach that utilizes elements of both classic pediatric and adult models. Professionals should interact predominantly with the patient. They should, however, be sensitive to the needs and wishes of each individual and actively encourage patients to be accompanied and supported. For younger teenagers this is virtually always by parents, legal carers, or other family members, but for older teenagers or young adults it could be partners, friends or any combination of these. It is not uncommon to have a number of people accompanying teenagers and young adults with cancer. Individual choices can also change. The 14 year old who comes accompanied by her parents and who defers largely to their wishes may well develop into the 18 year old who brings her boyfriend and who may wish to override the advice of all around her. At 20, however, she may wish her parents to come as well, and also take and listen to advice from those around her. This demands an approach

that is both flexible and offers choices. It is almost impos- sible for this to be feasible without an extensive multi- professional and multi-disciplinary team.

Typically, patients in the teenage and young adult group have a much lower rate of entry into clinical tri- als than children. This reality is likely to be multi-fac- torial, but one important factor has been the perceived

‘difficulty’ of engaging young people in complex dis- cussion. There is no fundamental reason for thinking that teenagers and young adults are less likely to con- sent to clinical trials than patients in any other age group.

21.5.3.4 teenage and young adult Units and teams

The first unit identified specifically as being for adoles- cents with cancer is sited at the Middlesex Hospital in London. This 10-bedded facility was opened in 1990 and focused predominantly on the care of young peo- ple with bone sarcomas [29]. Since then other units have opened, each reflecting local influences that have determined which cancers are managed within or out- side of them and which clinicians are involved primar- ily in the care of patients.

Some of these Teenage and Young Adult units opened as an adjunct to the local adult oncology facil- ity, whilst others have developed predominantly as an adjunct to pediatric oncology services. It has been less common for units to be developed by joint collabora- tion between adult and pediatric oncology teams but examples of this do exist.

Most of these units started with a combination of professional goodwill and charitable support. Funding from formal National Health Service sources has been sporadic, dependent upon local champions harnessing evidence and sympathetic commissioners of health- care being prepared to listen. As a result there has been no standard package of funding nor pattern of devel- opment. Some units continue to exist because staff expanded their roles voluntarily from their original remit whilst others have had varying degrees of spe- cific funding which may have included nursing staff, medical staff and other support staff.

The impetus for formation of these units has come

from a combination of professional awareness, patient

pressure, and lobbying by the voluntary sector. Despite notable successes to date, it is worth pointing out that it is still only the minority of cancer centers in the UK that have any specific facilities for young people. Even where these do exist, there is often disagreement between different groups of professionals about the value of such units. It seems that clinical hematologists are the medical professional group that has the most difficulty with the concept of managing young people within age-specific facilities.

When Teenage and Young Adult units were first created, the emphasis was on external appearances, albeit as a means of improving care and providing peer support. The need for bright and cheerful surround- ings was paramount, with elements of “home” such as a sitting room with sofas to lie down on, a kitchen area to make drinks and snacks, and teenage-friendly facil- ities including TVs, pool table, DVD player, and com- puters with Internet access. These were to be places where their friends and family could visit without embarrassment, to provide an environment that enabled them to maintain a sense of normality and continuation of their lives. As these units have taken shape over the last 10 years, it has become apparent to those caring for this group of patients that the work is challenging and demands special skills. This has led to increasing numbers of staff either being appointed specifically to Teenage and Young Adult units or changing their roles to provide a greater proportion of time to this service. Expertise has been developing in both the management of the particular cancers experi- enced by teenagers and young adults and in their spe- cific supportive care and psychosocial needs.

21.5.3.5 irtual Units and Peripatetic teams In the absence of specific facilities it has been possible, nevertheless, to develop some services for young peo- ple by offering a “service without walls.” Examples exist where specialized psychosocial support and expertise can be offered to the teenagers and young adults as a peripatetic service. In our own service in Leeds (United Kingdom), a team of professionals (i.e., nurse, social worker, learning mentor, and youth worker) can help provide some elements of care to those young people who cannot, for whatever reason, be cared for within

the confines of our inpatient facility. The team works alongside, not instead of, the specialized hospital- based teams. Patients and their families can be visited at home, in their local hospital, or at work/school, and can have access to a system that offers advice, support, disease and treatment expertise, and a base for them to contact at any time, for any reason. The inclusion of a youth worker in this team facilitates patients’ access to a network of other young people with cancer and over- comes some of the isolation they experience. Virtual units can become the foundation of definitive units, as the former have the capability of defining and, to a cer- tain extent, quantifying the need for future develop- ments.

There is a national review taking place currently of services for children and young people with cancer by the National Institute of Clinical Excellence, which is aimed at producing firm guidance to commissioners of healthcare by July 2005. This guidance encompasses those aged up to their mid-20s (www.nice.org.uk child and adolescent cancer).

Interestingly, whilst the United Kingdom may have taken the lead in developing adolescent cancer units, units are now being developed in several other coun- tries including Australia and France.

21.6 conclusions

In this chapter we have demonstrated ways in which services could be reorganized to meet the needs of the teenager or young adult with cancer. The path that will lead to the implementation of such developments is not a particularly easy one to take, and many obstacles may be placed in the way of establishing such best practice for this specific, separate group. However, we recommend that this does not deter those profession- als who both understand the need and are in a position to influence change.

All-too-often, services have evolved in an unplanned

way, with the result that these appear to serve the needs

and predilections of professionals rather than consum-

ers who then have to try to fit in. We believe it is fea-

sible to outline a single generic pathway for teenagers

and young adults with cancer that will require tailor-

ing for each individual’s specific disease and personal

circumstances. We believe that this will provide opti- mal care for young people and is worth striving for, but we know that it will happen only when the grip of pro- fessional ownership is loosened and the needs of young people are addressed as the primary concern.

references

1. Lewis IJ (1996) Cancer in adolescence. Br Med Bull 52:887–897

2. Thompson J (1988) Adolescents with cancer. In: Tiffany R, Webb H (eds) Oncology for Nurses and Health Care Professionals, vol 2. Harper and Row, London, pp 254–

3. Eiser C (1996) The impact of treatment: adolescents’ 261 views. In: Selby P, Bailey C (eds) Cancer and the Ado- lescent. BMJ Publishing, London, pp 264–275

4. Lynam MJ (1990) Examining support in context: a redefinition from the cancer patient’s perspective.

Sociol Health Ill 12:169–194

5. Pendley JS, Dahlquist LM, Dreyer ZA (1997) Body image and psychosocial adjustment in adolescent can- cer survivors. J Pediatr Psychol 22:29–43

6. Roberts CS, Severinsen C, Carraway C, et al (1997) Life changes and problems experienced by young adults with cancer. J Psychol Oncol 15:15–25

7. Dunsmore J, Quine S (1995) Information, support and decision making needs and preferences of adolescents with cancer: implications for health professionals. J Psychosocial Oncol 13:39–56

8. Evans M (1996) Interacting with teenagers with cancer.

In: Selby P, Bailey C (eds) Cancer and the Adolescent.

BMJ Publishing, London, pp 251–263

9. Jamison RN, Lewis S, Burish TG (1986) Psychological impact of cancer on adolescents: self-image, locus of control, perception of illness and knowledge of cancer.

J Chron Dis 39:609–617

10. Wilkinson J (2003) Young people with cancer – how should their care be organised? Eur J Cancer Care 12:65–70

11. Peppercorn JM, Weeks JC, Cook EF, Joffe S (2004) Comparison of outcomes in cancer patients treated within and outside clinical trials: conceptual frame- work and structured review. Lancet 363:263–270 12. Stiller CA (1988) Centralisation of treatment and sur-

vival rates for cancer. Arch Dis Child 63:23–30 13. Stiller CA (1994) Centralised treatment, entry to trials

and survival. Br J Cancer 70:352–362

14. Selby P, Gillis C, Haward R (1996) Benefits from spe- cialised cancer care. Lancet 348:313–318

15. Harding PJ, Paul J, Gillis CR, Kaye SB (1993) Manage- ment of malignant teratoma: does referral to specialist units matter? Lancet 341:999–1002

16. Stiller CA, Benjamin S, Cartwright RA, et al. (1999) Pattern of care and survival for adolescents and young adults with acute leukaemia – a population based study.

Br J Cancer 79:658–665

17. Nachman J, Sather HN, Buckley JD, et al. (1993) Young adults 16–21 years of age at diagnosis entered on Chil- drens Cancer Group acute lymphoblastic leukemia and acute myeloblastic leukemia protocols. Results of treat- ment. Cancer 7:3377–3385

18. Paulussen M, Ahrens S, Juergens HF (2003) Cure rates in Ewing tumor patients aged over 15 years are better in pediatric oncology units. Results of GPOH CESS/

EICESS studies. Proc Am Soc Clin Oncol 22:816 (abstract 3279)

19. Wilkinson JR, Feltbower RG, Lewis IJ, et al (2001) Sur- vival from adolescent cancer in Yorkshire, UK. Eur J Cancer 37:903–911

20. Pritchard J, Stiller CA, Lennox EL (1989) Overtreat- ment of children with Wilms’ tumour outside paediat- ric oncology centres. BMJ 299:835–836

21. Stiller C (2002) Epidemiology of cancer in adolescents.

Med Pediatr Oncol 39:149–155

22. Whelan J (2003) Where should teenagers with cancer be treated? Eur J Cancer 39:2573–2578

23. Bleyer WA (2002) Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, sur- vival, and importance of clinical trials. Med Pediatr Oncol 38:1–10

24. Department of Health (1991) Welfare of Children and Young People in Hospital. Department of Health, Lon- 25. Department of Health (2003) The National Service don

Framework for Children, Young People and Maternity Services. First Module – Standard for Hospital Services.

Department of Health, London

27. Department of Health (1995) A Policy Framework for Commissioning Cancer Services. A report by the Expert Advisory Group on Cancer to the Chief Medical Officer of England and Wales. Department of Health, London

26. Royal College of Paediatrics and Child Health (2003) Bridging the Gap: Health Care for Adolescents. The Intercollegiate Working Party on Adolescent Health, London

28. Selby P, Rider L, Joslin C, Bailey C (1996) Epithelial cancer. In: Selby P, Bailey C (eds) Cancer and the Ado- lescent. BMJ Publishing, London, pp 39–53

29. Souhami RL, Whelan J, McCarthy JF, Kilby A (1996) Benefits and problems of an adolescent cancer unit. In:

Selby P, Bailey C (eds) Cancer and the Adolescent. BMJ Publishing, London, pp 276–283