2.1 introduction
The history of adolescent and young adult oncology, as a distinct entity, is relatively short. Nevertheless, the true chronicle of cancer in the young is centuries old.
Such history is inevitably intertwined with that of can- cer and medicine. While reports of adolescents and young adults are not specifically recorded, evidence indicates that cancer in adolescents precedes and tran- scends human written history [1–3]. The types of can- cer most prevalent in this age group have been found or reported throughout the ages. One of the earliest cases of cancer was found by Louis Leaky in 1932 in the remains of either a Homo erectus or an Australo- pithecus and was suggestive of a Burkitt lymphoma.
Cancer, including osteosarcoma, which has its peak occurrence in the second decade of life, has been found in Egyptian mummies. A case of possible osteosar- coma was also discovered in the mummified skeletal remains of a Peruvian Inca. In recorded history, a clear description indicating knowledge of cancer dates back to at least 1500 BC. The Edwin Smith Egyptian Papy- rus, which was written between 3000 and 1500 BC, describes eight cases of tumors that were treated by cauterization with a tool called the “fire drill” [1]. The writing on the papyrus admits that there is no treat- ment. Hippocrates (450–370 BC) recognized the dis- ease and theorized that it was caused by the imbalance of four humors, and specifically excess of black bile emanating from the spleen [1]. He recognized the dif- ference between benign and malignant tumors and described cancers of many body sites. It was Hip- pocrates who coined the terms “carcinos” and “carci- noma,” Greek words referring to the shape of a crab.
The crab symbol still has currency as a sign of cancer.
2.1 introduction. . . . 27 2.2 Background for establishment of adolescent/
young adult Oncology as an entity. . . . 29 2.3 developments in the Psychosocial and
long-term care of adolescent and young adult Oncology Patients. . . . 34 2.4 Summary. . . . 34 references . . . 34
History
of adolescent Oncology
Cameron.K .Tebbi
contents
The earliest documented cure for cancer is found in Ramayana, the Hindu epic. This recommends arsenic paste to slow down the growth of the tumor. By the second century AD, Leonide of Alexandria used a scal- pel for the first time during an operation which, com- bined with cauterization to prevent hemorrhage, was to destroy the remnants of the cancer. During the same century, Galen, the Greek physician, became the first known oncologist. He considered metastatic cancer to be an incurable disease. By 50 AD, Romans had dis- covered that some tumors could be resected by surgery and cauterized, but no medicine was effective. Little was added to the ancient knowledge and treatment of cancer up to 1500 AD, when the practice of autopsy, later popularized by Harvey (1628), became wide- spread. In 1761 Giovanni Morgagni of Padua made autopsy a routine procedure to relate the disease and cause of death. John Hunter, the Scottish surgeon (1728–1793), differentiated resectable from nonresect- able tumors and suggested that some cancers can be cured by surgery.
During the same era, causes such as snuff (John Hill 1761) and exposure to soot (Percival Pott 1775) were related to nasal and scrotal cancer, respectively. These represent the earliest recognitions of carcinogenesis.
The first cancer hospital was founded in the 18th cen- tury in Reims, France, to control the spread of cancer, which was then assumed to be an infectious disease.
During the same period, Joseph Recamier described and used the term metastasis to indicate blood-born spread of cancer. Rudolph Virchow (1821–1902), a German pathologist, correlated microscopic pathol- ogy with the course of the disease. In 1895, Wilhelm Conrad Roentgen discovered the X-ray and was awarded the first Nobel Prize for his contribution.
Three years later, French scientists Pierre and Marie Curie discovered radium. Between 1900 and 1950, radiotherapy was developed as an effective treatment of cancer.
In the more recent era, the search for the etiology of cancer had a major boost when, in 1911, Peyton Rous demonstrated that sarcomas in Plymouth Rock hens can be transferred to normal animals by injection of cell-free filtrates of the tumor [4]. He received the Nobel Prize for his discovery in 1966. The search for other viruses and organisms followed. At one point,
cancer was incorrectly attributed to parasitic infec- tions, a “discovery” that erroneously was rewarded with a Nobel Prize to Fibiger in 1926 [5].
In 1958 Sir Dennis Burkitt described a type of lym- phoma, which now bears his name, in African children [6]. The geographic distribution and its relation to the Epstein-Barr virus and possibility of cure opened a new era of research. The introduction of the concept of
“oncogenes” enhanced the understanding of the con- trol of cell division in normal and transformed cells and their role in cancer [7, 8] and resulted in the pre- sentation of a Nobel Prize to J. Michael Bishop and Harold E. Varmus in 1989.
More recently, revolution in molecular genetic research has resulted in a better understanding of many types of cancer. The advent of microarry tech- nology will undoubtedly expand the field. The poten- tial of genetic technology for therapeutic purposes has now been well demonstrated [9, 10]. The development of a monoclonal antibody production technique by Kohler, Milstein, and Jerne has revolutionized the diagnosis and treatment of cancer [11]. For their dis- covery in 1975, they were awarded the Nobel Prize in Medicine in 1984.
Colchicine, benzol, and arsenic were the earliest
effective chemotherapy agents used for cancer; how-
ever, these had severe side effects. During the Second
World War it was noted that exposure to mustard gas,
a chemical warfare agent, resulted in leukopenia. It
was then deduced that this might damage rapidly
growing cells in cancer. By the 1940s, intravenous
mustard was used in mouse and man, and proved to be
temporarily effective in the control of lymphomas [12,
13]. This opened the era of chemotherapy and
encouraged the search for other chemotherapeutic
agents for the treatment of cancer. In 1947, Sidney Far-
ber of Boston reported temporary remissions in acute
leukemia in children by using aminopterin [14]. Two
years later, methotrexate was used for “acute leukemia
and other forms of incurable cancer” [15]. The same
investigator introduced adrenocorticotrophic hor-
mone for the treatment of childhood acute leukemia
[16]. The development of a host of other effective
agents, including antineoplastic antibiotics, alkylating
agents, vinca alkaloids, nitrosoureas, hormones,
enzymes, antimetabolites, topoisomerase inhibitors,
and biological response modifiers, followed. The util- ity of each agent and best mode of administration and combination, and development of in vitro and animal models resulted in new hope for the treatment and cure of cancer.
Pediatric oncology took the lead in organizing groups to systematically test the effects of various new cancer chemotherapy compounds and combinations.
In 1955, the Acute Leukemia Chemotherapy Group A, later to be called Children’s Cancer Group (CCG), was established to conduct research on childhood cancer.
Cancer Chemotherapy Group, later renamed South- west Oncology Group (SWOG) was formed. In 1979, the pediatric division of SWOG separated to become the Pediatric Oncology Group (POG). Likewise, the Cancer and Leukemia Group B was established in 1955 with a pediatric division, which was separated and its institutions amalgamated into POG and CCG in 1980.
Despite the golden opportunities that a combina- tion of adult and pediatric groups had created, no attempts were made to establish adolescent sections or programs in those early days. Over time, the American clinical investigation organizations expanded their membership to include international members from across the globe. Other pediatric clinical trial groups (i.e., National Wilms’ Tumor Study Group, NWTS, and Intergroup Rhabdomyosarcoma Study Group, IRSG), were established in 1969 and 1972, respectively.
All children’s trial groups admitted pediatric, adoles- cent, and young adult patients to their protocols.
Despite these developments, adolescent and young adult patients had fallen through the cracks. The activ- ity of these groups, which was initially limited to the evaluation of chemotherapy agents, eventually expanded to include scientific research in areas such as, for example, tumor biology, molecular genetics, drug resistance, biological responses, immunotherapy, transplantation, nursing, epidemiology, and cancer control.
With the merger of four major national pediatric group organizations (i.e. CCG, POG, NWTS, and IRSG), in the year 2000, into a single national group called Children’s Oncology Group (COG), an expanded Adolescent and Young Adult Committee was estab- lished to address the needs of these patients.
2.2 Background for establishment of adolescent/young adult Oncology as an entity
From time immemorial, adolescents have been cri- ticized for their behavior. Socrates complained that
“children today are tyrants; they contradict their parents, gobble their food, and tyrannize their teach- ers.” 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 ambiva- lence, rebellion, desire for freedom from family, con- flicts 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 privi- leges and acceptance of responsibility, coupled with the desire to be different, has led to labeling adoles- cents as difficult and unruly. Often the behavior of adolescents is frowned upon with antipathy and dis- like, if not abhorrence, not realizing these characteris- tics 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 emo- tional 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 mul- tiplied 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 ser- vices [18]. In the 1970s, when cancer was becoming a more “chronic” disease, and promising reports of suc- cessful treatment in types of cancer, which heretofore was deemed incurable, appeared in the literature, phy- sicians 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 diffi- cult 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 understand- ing 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 ado- lescent oncology unit was established in 1978. Estab- lishment 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 specifi- cally dedicated to cancer was received enthusiastically by patients and their families alike. The reception by medical and surgical subspecialists was far less enthu- siastic. 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 geo- metric 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 instru- ments, 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 mag- azines 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 fami- lies who wanted to take some time off and not be dis- turbed 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 commu- nication and support emotional stability in crisis situ- ations. A teacher visited patients on a daily basis and through an agreement with a local college, post-sec- ondary education was available. In retrospect, the edu- cational 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 occu- pational 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 postdoc- toral 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 pro- gram was designed for patients who opted to stay at home. An evaluation program periodically examined satisfaction with the various aspects of the unit’s opera- tion 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 ado- lescent oncology patients was scanty, if not nonexis- tent. In a series of investigations, the medical and psy- chological 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 sur- prise, 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 adoles- cent/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 adoles- cent/young adult unit, significant noncompliance with self-administered cancer therapy was noted. This led to a series of studies of patients and parents of adoles- cent cancer patients, and a means to improve compli- ance [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 func- tion in the workplace were examined [41, 42]. This dis- closed a greater degree of functional deficit in unem- ployed versus employed cancer survivors, and in health, life, and disability insurance issues [41]. Never- theless, 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 effec- tively closed.
A new chapter in adolescent and young adult oncol-
ogy commenced when in October 1992, the American
Cancer Society (ACS) sponsored a workshop on Ado-
lescents and Young Adults with Cancer [45]. The con-
ference 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 con- ference was a departure from prior attitudes toward the importance of specialized care for adolescent and young adult cancer patients. In fact, before the leader- ship 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 Con- ference” was attended by many leaders in pediatrics, adolescent medicine, and medical and surgical oncol- ogy. 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 pub- lished proceedings of the conference had an important conclusion, which recognized cancer as a significant health problem in the adolescent and young adult pop- ulation [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 participa- tion of adolescent and young adults in cooperative group trials and superior outcome of those treated based on a national protocol as compared to Surveil- lance, 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 oncol- ogy was begun in 1998 when the CCG initiated an
“Adolescent Young Adult Committee” under the lead- ership 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 recog- nition 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 popula- tion [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 ado- lescents [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. Sim- ilar 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, 67–
70]. Unlike pediatric oncologists, who treat the major- ity of their patients according to an established proto- col, and often, if not always, belong to a cooperative group, in the United States medical oncologists infre- quently enter their patients in group studies [71]. In contrast to patients under age 15 years where, irre- spective 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 institu- tions [65, 73, 74]. Likewise, adolescent cancer partici- pation in clinical trials remains poor in pediatric cen- ters (34.8%) and other institutions (12.1%) [70, 75].
The age-adjusted registration rate of patients aged 15–
19 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 coopera-
tive 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 ado- lescent patients are treated by nononcology subspe- cialists, such as neurosurgeons and other surgical spe- cialists.
The reduction in the mortality rate among adoles- cent 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 evi- denced by the poorer response of similar patients treated with the same protocol [80], other factors are also to be considered. A uniform, meticulous, system- atic approach to the subject is needed. Lack of a sepa- rate and identifiable health-care system for adolescent/
young adult patients in the United States and elsewhere will probably result in the continued division of ado- lescent 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 exis- tence, the COG Adolescent and Young Adult Commit- tee has taken steps to organize a comprehensive pro- gram 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 ques-
tionnaire, only 1 hospital had a formal designated ado-
lescent 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 adoles-
cents 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 oncol-
ogists 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 par- ents 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 ado- lescent oncology units, is needed to expand and rem- edy 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.
2.3 developments in the Psychosocial and long-term care of adolescent and young adult Oncology Patients The history of the development of adolescent oncology is incomplete if one is remiss in mentioning the devel- opments in psychosocial and long-term care of the patients [90]. During the period 1975–1984, the sur- vival of adolescent and young adults with cancer had increased to 69%, with improvements in most major categories of cancers [57]. In this period of time, with increased survival, the problems concerning quality of life have gained prominence. Subjects such as “psycho- logical aspects of cancer survivors,” “late effects,” “long term survivors clinics,” “second cancer,” and “transi- tion to adult care,” which did not exist before, have found their way into the lexicon of oncologists in the United States and elsewhere [80, 82, 91–94]. Likewise, with significant societal changes in the 1970s and 1980s, the subject of death and dying, which once was
“taboo,” is discussed openly and has become a new area for research and open discussion. Hospice care, initially introduced by physician Dame Cicely Saun- ders in the UK in the early 1960s and culminating with the opening of the first hospice in 1967, has found its way to the United States and has become a part of end- of-life patient care. The American Academy of Hospice and Palliative Care, originally chartered as the Acad- emy of Hospice Physicians, was established in 1988 [95]. Publication of 500 interviews with dying patients entitled “On Death and Dying” and analysis by Dr.
Elisabeth Kubler-Ross [96] catalyzed a more open dis- cussion with dying individuals, including adolescent and young adult patients. The trend continues with
most major adult and pediatric cancer study groups establishing committees on end-of-life care.
2.4 Summary
The understanding of cancer in adolescents is perpetu- ally unfinished; the final answers not yet known, if they ever will be. The age-old questions of etiology are still the same today as they have been for millennia.
The challenge remains to use today’s technology to better understand the exact causes responsible for the development of cancer in the young, which has per- plexed those who have come before us, and prevent the disease in those who are yet to come. Until methods for etiology-derived prevention of cancer becomes available, efforts need to be continued to use the latest available tools for early diagnosis and therapy, and to reduce the visible and invisible scars of the disease and its treatment [18, 80].
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