Of Adolescent Young Adult Oncology as an Entity

From time immemorial, adolescents have been criticized for their behavior. Socrates complained that "children today are tyrants; they contradict their parents, gobble their food, and tyrannize their teachers." Homer declared "thou knowst the over-eager vehemence of youth, how quick in temper, and in judgment weak." Shakespeare suggested that teenagers be put into suspended animation until of age [17]. Some characteristics of adolescents, including ambivalence, rebellion, desire for freedom from family, conflicts with parents, reaction with intensity, choice of music, identification with peer group, and sexual activities, have created a negative stereotype for this age group. An imbalanced rate of demands for privileges and acceptance of responsibility, coupled with the desire to be different, has led to labeling adolescents as difficult and unruly. Often the behavior of adolescents is frowned upon with antipathy and dislike, if not abhorrence, not realizing these characteristics may be appropriate for this age group, and likely constitute one of the pillars of human advancements over the ages.

For adolescents, the transition from childhood to adult status is equally difficult and stressful. As such, many experience ambivalence, and physical and emotional turmoil, which threaten their ability to become healthy and productive adults. Cancer, a catastrophic, life-threatening disease, has major physical, functional, psychological, and social implications, which are multiplied in the adolescent and young adult age group. While cancer in this age group is not rare, it poses a unique enough challenge to require specialized services [18]. In the 1970s, when cancer was becoming a more "chronic" disease, and promising reports of successful treatment in types of cancer, which heretofore was deemed incurable, appeared in the literature, physicians began treating their patients with curative rather than palliative intents [19]. At that point, it became apparent that a catastrophic disease with uncertain outcome requiring intensive therapy is difficult to face without a major social support system [20]. It had been recognized for some time that care for ado lescent/young adult patients requires an understanding of the process of physical, mental, psychological, and social growth and development [21]. Adolescent services had been in existence in the United States since 1951, when Dr. J. Roswell Gallagher established adolescent medicine and a unit at Boston Children's Hospital [22]. Against this background, the first adolescent oncology unit was established in 1978. Establishment of the unit, where this writer was the director, was by a grant from the National Cancer Institute (NCI). The unit was established through the efforts and support of Dr. James Wallace, then the director of the Division of Cancer Control and Rehabilitation, and endorsement of Dr. Gerald Murphy, then the Institute Director at Roswell Park Memorial Institute. While adolescent medicine as an entity was not new, the idea of a separate unit for adolescent/young adult oncology patients was unique. Establishment of a unit specifically dedicated to cancer was received enthusiastically by patients and their families alike. The reception by medical and surgical subspecialists was far less enthusiastic. There was significant opposition, expressed and implied, by various medical and surgical services. The ten-bed unit, which was located in a separate building and connected to the main hospital, proved to be resented by most departments on several principles. Most medical and surgical staff physicians preferred their patients to be hospitalized on their own floors. Some were unwilling to lose the adolescent population from their services, which was another deterrent to admission to the units. Our much more modern facility for adolescents and young adults than the then older hospital floors was also resented. Only with the strong support of Dr. Gerald Murphy, the devotion and resilience of the unit staff, and demand of patients and their families, has the unit survived and flourished. Dr. Murphy had personal experience with adolescents through his own biological and adopted children, and had significant knowledge of adolescents' desires and behavior.

The physical structure of the unit, which was designed with the patients' input, proved to be a major draw. The unit was painted with bright colors and geometric designs appealing to adolescent and young adult patients. It included a sizeable patient lounge with bright furniture, a large aquarium, and decora tions. Patient rooms were designed with adolescent and young adult patients in mind [23]. An arcade-like recreation room with the latest in electronic games then available, foozball, air hockey, bumper pool table, jukebox, stereo system, large TV, and musical instruments, drew the patients' friends to visit them in the hospital. An extensive exercise and arts and crafts room, a classroom, and a library with books and magazines appealing to the age group, were provided. A well-stocked and equipped kitchen with dining room allowed patients or their parents to cook and dine together. There was no dress code. A laundry room was available to patients so that they could wear their own, not the hospital, clothes. A room designated as a quiet room was furnished for patients and their families who wanted to take some time off and not be disturbed by anyone, including medical personnel. A separate parents' lounge and room to stay when their child was critically ill allowed parents to be involved, but not intrusive. Selection of the staff for the unit was based largely on their desire and ability to work with adolescent/young adult patients. Primary nursing care proved to be essential for the operation of the unit. Various programs were designed to promote communication and support emotional stability in crisis situations. A teacher visited patients on a daily basis and through an agreement with a local college, post-secondary education was available. In retrospect, the educational opportunities offered, especially for those less engaged in school prior to the diagnosis of cancer, was an important function of the unit [23]. Among other programs offered were music therapy, group sessions, and career planning. The unit, in those early days, offered a computer for patients' use, which was then unique. With a grant from Poets and Writers Inc., a creative writing program was established. The unit's monthly newsletter, entitled "Now and Then News," often contained excellent articles or poems expressing patients' and staff's feelings and experiences.

Offices of the staff, including the medical director, patient care coordinator, family counselor, and occupational therapist, were in the unit and open to patients and their families and friends. Patients' records were computerized, allowing access, using a series of codes, to the patients' prior admissions and discharge notes. This was probably one of the earliest attempts at com puterized medical record keeping. The unit shared a research laboratory, and accepted pre- and postdoctoral trainees.

The rules governing the unit, including visiting hours and visitors' age limit and number, were liberal [17]. A family night was hosted on a monthly basis for the patients and their families to attend. In-patient field trips decreased the monotony of staying in the hospital, which were then, as a rule, lengthier and more frequent than they are today. A home- and terminal-care program was designed for patients who opted to stay at home. An evaluation program periodically examined satisfaction with the various aspects of the unit's operation by the patients, their families and staff [23, 24].

Shortly after the establishment of the unit, it became apparent that information regarding care of the adolescent oncology patients was scanty, if not nonexistent. In a series of investigations, the medical and psychological effects of the diagnosis and treatment of cancer in adolescents were probed. Since nowhere are these effects more exaggerated than with loss of a limb and its effect on body image, physical, psychological, and social functioning of the patient, a major effort was placed on study of this subject. These studies described various aspects of the bone tumors [25-27] and the short- and long-term effects of the amputation on the patients' lives [28, 29]. With some degree of surprise, the research found that, in general, despite all adversities, in the long-term most amputee patients had adjusted to their circumstances and were leading full and productive lives [28, 29]. Other investigations probed the role of social support systems in adolescent/young adult patients [20, 30]. Evaluation of the pattern of religiosity and locus of control revealed that adolescent cancer patients were not significantly more religious than established norms [31]. However, among younger adolescents, the diagnosis and treatment of cancer may have accelerated the development of inter-nality, which is expected to be associated with increased age [31]. Early during the establishment of an adolescent/young adult unit, significant noncompliance with self-administered cancer therapy was noted. This led to a series of studies of patients and parents of adolescent cancer patients, and a means to improve compliance [32-37]. Since the psychological aspects of the disease play an important role in the care of patients, great emphasis was placed on this aspect of care [24, 38, 39]. Depression had been observed and studied extensively in adult cancer patients, but no systematic evaluation was available for adolescent oncology patients. In a series of studies, the rate of self-reported depression in cancer patients was probed [40]. Issues pertaining to long-term survivors were another venue for early research. With improved survival, the short-and long-term sequelae of cancer and its effects on the vocational achievements of the patients and their function in the workplace were examined [41, 42]. This disclosed a greater degree of functional deficit in unemployed versus employed cancer survivors, and in health, life, and disability insurance issues [41]. Nevertheless, there was no significant relationship between health status and employment. As a whole, former cancer patients had a higher average income compared to a control group, and were competitive members in the workplace [41]. The experiences in establishment of a specialized unit, care, and nutrition for these patients were published [21, 43]. This, along with annual adolescent oncology conferences, attracted a significant number of interested individuals to work and train in the unit. Publication of the first book solely devoted to adolescent oncology [44] increased the awareness of cancer in adolescents and young adults, albeit to a limited extent.

In 1989, when Dr. Gerald Murphy left Roswell Park, the unit, which was then by far the most modern and progressive floor of the hospital, was viewed as an "extravagance" by the new administration. For cost-cutting purposes, it was decided that its resources should be shared with pediatrics. Consequently, in October of 1989, despite the pleas of dedicated staff and patients, the unit was merged with pediatrics and the adolescent/young adult cancer program was effectively closed.

A new chapter in adolescent and young adult oncology commenced when in October 1992, the American Cancer Society (ACS) sponsored a workshop on Adolescents and Young Adults with Cancer [45]. The conference served as a watershed for recognition of the special needs of this group of patients. It was attended by, and had the support of, Dr. Gerald P. Murphy who, after leaving Roswell Park Cancer Institute and State University of New York, had accepted a position as the chief medical officer of the ACS. To organize this conference was a departure from prior attitudes toward the importance of specialized care for adolescent and young adult cancer patients. In fact, before the leadership of Dr. Murphy, when an earlier conference entitled "Advances in Care of the Child with Cancer", was being planned by the ACS in 1985, this writer suggested that the subject of adolescent oncology be included in the agenda. The organizer of that conference indicated that nothing was new or important enough in adolescent oncology to merit a session, and the subject was declined. The 1992 "Adolescent and Young Adult Conference" was attended by many leaders in pediatrics, adolescent medicine, and medical and surgical oncology. Among these were chairs of then major pediatric cancer groups. The workshops included sessions on long-term care and lifetime follow-up [46], insurance and employability [47], psychological and emotional issues, specialized support groups/compliance issues [48], and clinical research implications [49]. The published proceedings of the conference had an important conclusion, which recognized cancer as a significant health problem in the adolescent and young adult population [45]. It observed that the rate of cancer in patients 15 to 19 years of age is equal to that of 0- to 4-year-olds, and 1.6 times that in patients between 5 and 14 years of age [50, 51]. The conclusions also brought attention to the relatively infrequent participation of adolescent and young adults in cooperative group trials and superior outcome of those treated based on a national protocol as compared to Surveillance, Epidemiology, and End Results (SEER) data [50]. This observation has ignited new initiatives to include these individuals in cancer trials [51-54]. The 1992 conference also emphasized the necessity for long-term follow up and psychosocial support, and called attention to discrimination in insurance and employment [50]. The concluding remarks included recommendations to remedy these concerns [50].

Another chapter in the history of adolescent oncology was begun in 1998 when the CCG initiated an "Adolescent Young Adult Committee" under the leadership of Dr. W. Archie Bleyer. When in the year 2000 the COG was formed from the predecessor childhood cancer cooperative groups, the Adolescent and Young Adult Committee was endorsed and expanded.

Intuitively, the genesis of the committee was recognition of the fact that there are currently approximately 37 million individuals between the ages of 10 and 19 years living in the United States. Based on SEER data, the incidence of cancer in the United States among the adolescent and young adult population during the 1990s is 203 new cases per million population [55], which, while higher than the rate reported from the United Kingdom, is similar to those elsewhere [56-58]. The incidence of cancer in 15- to 19-year-olds is on the rise [52, 59-63]. In the United States, this has increased an average of 0.7% per year from 1975 to 1998 [18, 53], yet no age-defined health-care system or providers are generally available to the majority of adolescents [64]. Thus, the healthcare of this group of patients is fragmented and is divided between medical, pediatric and general practitioners, and others [18, 65]. On the other hand, in the United States, the mortality from cancer has decreased at the rate of 3.3% per year for the period 1965-1974 and 2.6% per year for the period 1975-1984, a trend that continues to date. Similar progress is reported in Europe [60, 61, 66].

The importance of the clinical trials strategy group of the COG Adolescent and Young Adult Committee is underscored by the lack of clinical trial participation of older adolescent and young adults with cancer. Compared to children [51, 67], a far lower percentage of adolescents are entered into clinical trials [64, 6770]. Unlike pediatric oncologists, who treat the majority of their patients according to an established protocol, and often, if not always, belong to a cooperative group, in the United States medical oncologists infrequently enter their patients in group studies [71]. In contrast to patients under age 15 years where, irrespective of race [72], 94% are treated in centers that were members of a cooperative group, less than 21% of those 15 to 19 years of age are treated in such institutions [65, 73, 74]. Likewise, adolescent cancer participation in clinical trials remains poor in pediatric centers (34.8%) and other institutions (12.1%) [70, 75]. The age-adjusted registration rate of patients aged 1519 years to pediatric cooperative groups is only 24% [76]. In one study of 29,859 subjects under 20 years of age entered onto NCI-sponsored clinical trials between January 1, 1991, and June 30, 1994, pediatric cooperative groups accounted for less than 3% of the clinical entrees in the 15 to 19 years age range [67]. Overall, 5% of 15- to 25-years-olds as compared to 60-65% of younger patients in the United States and Canada enter clinical trials [53].

There is some controversy regarding the differences in the response and survival rate of adolescent patients treated by medical and pediatric oncologists and in oncology centers and elsewhere [18, 56, 71, 77, 78]. However, there is no question that to obtain uniform results and to better understand the biology, course of the disease, and survival, these patients must be treated in an organized fashion. To add to this mix, many adolescent patients are treated by nononcology subspe-cialists, such as neurosurgeons and other surgical specialists.

The reduction in the mortality rate among adolescent and young adults has lagged behind those of young children [52-54, 79, 80]. While the main reason for such a disparity may have a biological basis, as evidenced by the poorer response of similar patients treated with the same protocol [80], other factors are also to be considered. A uniform, meticulous, systematic approach to the subject is needed. Lack of a separate and identifiable health-care system for adolescent/ young adult patients in the United States and elsewhere will probably result in the continued division of adolescent oncology patients among various subspecial-ties [81].

While the problems and special needs of adolescent oncology patients are well recognized, their priority remains low [81]. The current challenge faced by the general medical and pediatric establishment and the COG remains to assure that adolescents with cancer receive the benefits of treatment in an age-appropriate setting and be included in clinical trials and research [82, 83]. With this background, during its short existence, the COG Adolescent and Young Adult Committee has taken steps to organize a comprehensive program including subcommittees for all major categories of oncological disorders common among adolescent and young adult patients. The Committee now consists of more than 120 members who represent nearly 20 disciplines, and is sustained by funding from the NCI and the health insurance industry. It is organized into three Strategy Groups (disease-specific clinical trials, behavioral oncology and health services research, and epidemiology research, and awareness) and a sentinel task force on survivorship transition. In addition, the Committee has established task forces on access to clinical trials and care, cancer control and community oncology programs, adolescent treatment adherence, exercise and adventure therapy, and development of an informative website.

Unfortunately, years after the demonstration of the benefits of treatment of adolescent patients in a unit of their own [23, 84, 85], only a handful of specialized adolescent oncology services in the United States and elsewhere are operational. In the United Kingdom, the Teenage Cancer Trust (TCT) is an advocate of these units [85, 86] (see Chapter 21). There are currently eight operational units, and there are plans for the establishment of a TCT unit in every regional cancer center [85, 86]. Adolescent oncology units can provide an environment where the age-appropriate atmosphere and facilities coupled with medical technological and psychosocial expertise can provide specialized care while reducing dropouts of the treatment and short-and long-term side effects of cancer and its therapy. In an inquiry sent to 238 COG institutions in the United States, of the 196 institutions that responded to a questionnaire, only 1 hospital had a formal designated adolescent oncology unit (unpublished observation, Tebbi 2004). In the same inquiry, ten admitted their patients to a general adolescent unit, and only seven had staff who specifically identified with the care of these patients (unpublished data, Tebbi 2004). While adolescents are generally resilient [87, 88], in adult units these patients are frightened by the generation gap, adults disfigured by cancer, and rigid rules imposed upon them while they are hospitalized. Medical oncologists tend to regard 16- to 21-year-olds as adults and do not make a distinction between them and older patients [70]. Furthermore, diagnoses common in older adults are rare in adolescents and young adults [70]. While disputed, at least for some oncological diseases, the treatment of adolescents according to a pediatric protocol has yielded better results than on medical oncology protocols [18, 71, 89]. In a pediatric setting, however, adolescents and young adults are often demeaned by an atmosphere created for very young children and the childlike manner with which they often are dealt, not considering their age and accomplishments. The patients are often bypassed by the pediatric staff, who habitually deal with their parents rather than directly with the patient. Thus, the trend that has already started in the United States [23] and the United Kingdom [85, 86] of establishing adolescent oncology units, is needed to expand and remedy the situation. Designation of a special December

2003 issue of the European Journal of Cancer and an adolescent oncology conference in London in March

2004 are positive steps toward these goals.

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