Provider issues

Adolescents and young adults, more than younger children, receive their routine medical care from a heterogeneous population of specialists, and, therefore, have many pathways via which they can access onco-logic care. Several recent studies have quantified adolescents' use of health services in the United States [9, 16]. The choice of provider varies with age and gender, with increasing use of family practitioners, internists, and gynecologists and decreasing use of pediatricians as children age. Only 11% of adolescents over the age of 14 years see pediatricians. Regardless of health insurance status, adolescents and young adults are the most likely of any age group to lack a usual source of care [10]. Fifteen- to 24-year olds are the age group with the highest rates of use of the emergency room for any outpatient care: 18.5% of all of their medical visits and 12.6% of all non-injury-related visits are to the emergency room [17]. The lack of a primary physician may be a deterrent to a patient seeking timely attention for early symptoms of cancer, and a physician who is unaware of the patient's baseline medical status may contribute to a failure to recognize the signs of cancer. Clinical suspicion is low (since adolescents and young adults are not "supposed" to get cancer) and symptoms may, and frequently are, attributed to physical exertion, fatigue, and stress.

Although unstudied, the provider whom an adolescent and his/her family chooses to see if there is any suspicion of a malignancy may be different than that chosen for other, more common problems of adolescence. There may be more use of the emergency room and surgical specialists. One pediatric oncology pro gram in Texas examined the difference in the referral source of children under 12 years compared with that of older adolescents (15 to 21 years of age) and found that 15 out of 18 children were referred by primary care doctors (pediatricians, and family practice and emergency room physicians), but that 15 out of 18 older adolescents were referred by adult surgeons or adult oncologists [18]. In a Canadian study of 15- to 19-year olds, 61% contacted a general practitioner with their cancer symptoms during the period 19952000. Only 3% saw a pediatrician, compared with 15% of children less than 15 years of age. Twenty-four percent of Canadian adolescents saw an emergency room physician, similar to the 30% of children [19]. It is a logical assumption (currently being studied in the United States) that the type of provider that an adolescent or young adult sees will influence the subsequent referral to oncologic care.

The referral to oncology services is driven largely by physician opinion and preference. A study of adolescent and young adult patients in Britain found that over half of patients had never been given a choice between treatment centers or providers. Although some of the referring decision is certainly based on the diagnostic category (e.g., Wilms tumor vs. cervical cancer), there may be other patient factors involved (age, sex, ethnicity, geographic distance from a pediat-ric tertiary care center, a patient's insurance status, and perceptions of patient's social situation, or physician characteristics including specialty, years in practice, and location of training). Diagnosis does appear to influence referral; in the Canadian study, 51% of adolescents with leukemia were treated at pediatric centers, but only 11% of those with carcinoma [19]. In the Utah study, 57% of leukemia patients and 11% of carcinoma patients were treated at a pediatric center, but less than 30% of adolescents with brain tumors and lymphoma [20]. In a study of Florida patterns of care, the tumors least likely to be seen at the pediatric centers were Hodgkin lymphoma, "other" tumors, and brain tumors [21]. Some pediatric hospitals have upper age cutoffs that prohibit admissions of older adolescents; in England, most pediatric hospitals do not accept those over age 16 years of age. Anecdotally, few patients are referred to pediatric oncologists after seeing a medical oncologist; a survey of medical oncolo gists on the subject had a poor response rate (29%) but concluded that medical oncologists believe that they appropriately treated adolescents as adults [22].

To whom should adolescents with cancer be referred for their oncologic care? With the current lack of definitive outcome data, this question remains unanswerable. To start with, it depends on the type and stage of cancer, and the age of the patient. For a patient with a completely resected brain tumor, it may only be a neurosurgeon. For a 19-year-old male with a metastatic malignant melanoma, it may be a medical oncologist.

A compelling reason to choose a site for treatment is because of a proven survival advantage. Such outcome studies are difficult to conduct, as patient numbers with individual tumor types in this age range are small. Several papers have shown a survival advantage to children with cancer treated at specialist pediatric oncology centers [23, 24]. A clinical trial of Ewing sarcoma patients in Germany showed a survival advantage to older adolescents treated at pediatric centers compared with nonpediatric centers, although all patients received the same protocol therapy [25]. Recent data showed a marked survival advantage to older adolescents with acute lymphoblastic leukemia treated on a pediatric oncology group clinical trial compared with those treated on an adult cooperative group clinical trial (cf. Chapter 5) [6, 16]. Data from the National Cancer Data Base indicated that American adolescents aged 15 to 19 years with non-Hodgkin lymphoma, leukemia, liver cancer, and bone tumors had a survival advantage if treated at a National Cancer Institute (NCI) pediatric group institution [26].

The location of treatment may matter the most with regard to how it affects access to and participation in clinical trials. In the United States, 55-65% of children are entered into clinical trials. In contrast, only about 10% of 15- to 19-year-olds with cancer are entered into a clinical trial [13, 27]. Among 20- to 29-year-olds, the participation rate is even lower, with fewer than 10% being seen at member institutions of the cooperative groups, either pediatric or adult, and only about 1% of 20- to 29-year-olds entering clinical trials. This is due largely to the diminishing rate of patients seen at institutions that participate in NCI-sponsored clinical trials. Among older patients, the trial participation rate is higher, putatively between 3 and 5%, but still much lower than in children. Similarly, in Canada, the TOSS survey found that 21% of adolescents who were referred to pediatric oncology centers were enrolled on clinical trials, but none of those referred to adults centers were on trials [19].

Besides choosing a provider for survival advantage, the patient should choose a provider/center that is comfortable with and skilled in dealing with the psychosocial and developmental issues of the adolescent. Issues such as compliance, importance of a social calendar, different prioritization, and fertility preservation are issues that do not come up as often for younger or older patients, and some providers may not have the experience or communication skills to address them.

In the United States, two leadership bodies have stated that pediatric oncologists are the most appropriate providers for adolescent cancer patients, at least in consultation. A 1997 American Academy of Pediatrics consensus statement considered referral to a board-eligible or board-certified pediatric hematologist-oncologist and pediatric subspecialty consultants as the standard of care for all pediatric and adolescent cancer patients [28]. A wider consensus panel that included adult oncologists, the American Federation of Clinical Oncologic Societies, also concluded that "payors must provide ready access to pediatric oncologists, recognizing that childhood cancers are biologically distinct" and that the "likelihood of successful outcome in children is enhanced when treatment is provided by pediatric cancer specialists" [29]. However, neither of these statements defines an age cutoff for the recommendation. The numbers suggest that, as age increases, there is a steep fall off in observance with this recommendation. A cancer registry review in Utah, a state that has only one pediatric oncology treatment facility, showed that only 36% of oncology patients aged 15 to 19 years were ever seen at a pediat-ric hospital, compared with 85% of 10- to 14-year-olds and 98% of those younger than age 10 years [20]. A study of the National Cancer Data Base found that for nearly 20,000 cases of cancer in adolescents aged 1519 years, only 34% were treated at centers that had NCI pediatric cooperative group affiliation [26]. In Canada, 30% of adolescents aged 15-19 years are treated at pediatric oncology centers; 47% of those aged 15-17 years, and 9.6% of those aged 18-19 years [19]. In the United Kingdom, only about 6% of adolescents and young adults 16-24 years of age are recorded on a national registry of all patients treated in the 22 United Kingdom Children's Cancer Study Group pedi-atric centers.

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