Psychosocial and Supportive Care

The greatest difference in the management of adolescents and young adult patients is in the supportive care, particularly psychosocial care, that they require. These patients have special needs that are not only unique to their age group but also broader in scope and more intense than those at any other time in life.

Young adult and older adolescent patients are on the cusp of autonomy, starting to gain success at independent decision-making, when the diagnosis of cancer renders them "out of control" and often throws them back to a dependent role with parents and authority figures (by circumstance and/or by choice). Sometimes the patient has become distanced from his or her nuclear family but has not yet developed a network of adult support relationships. The young adult or adolescent patient usually has many new roles they are just trying to master when the cancer diagnosis hits: high school student, college student, recent graduate, newlywed, new employee, or new parent. How can they succeed when, in addition to all of these stresses, cancer intervenes? How can they plan and begin their future when they suddenly realize that they may not have one? What will happen if they cannot graduate, keep their friends, finish their education, get a good job, marry, have children, or be whatever they aspire to be?

Because of the complex issues of dependence, decision-making during cancer therapy is different for the patient, family, and physician of an adolescent/young adult than for either younger patients (which is more paternalistic) or for the older adult (more patient-centered). The young adult patient may wish to make his or her own decisions, but his or her understanding of the illness may be incomplete or flawed [49].

Honing social and interpersonal skills is an important developmental milestone during adolescence. Cancer treatment for these patients must accommodate this important developmental process. We have discharged a patient from the intensive care unit to allow her to attend her senior prom, and readmitted her when the party was over. Yet boundaries must be set, so that treatment effectiveness is not compromised to keep a "social calendar." Certainly, cancer therapy causes practical problems in social arenas. Adolescent and young adult patients, who are developmentally dependent on peer-group approval, often feel isolated from peers by their experience; the cancer patient's issues are illness and death, while their peers are consumed by lipstick and homework. All adolescents agonize over their personal appearance and hate to be singled out or to appear different. In adolescents with cancer, having to be isolated from peers and society by having a disease that makes them different and having to be treated separately is often devastating. In addition, many of the adverse effects of therapy can be overwhelming to an adolescent's or young adult's self-image, which is often tenuous under the best of circumstances. Weight gain, alopecia, acne, stunted growth, and mutilating surgery to the face and extremities are examples of adverse consequences that can be devastating to an adolescent's self-image. In particular, hair loss is cited over and over as a huge blow to the adolescent or young adult (especially the female) with cancer.

Other challenges include the time away from school, work, and community that therapy requires and the financial hardships that occur at an age when economic independence from family is an objective. There may be guilt if not attending to these responsibilities, or stress and fatigue if trying to keep up a semblance of normal activity.

This is a period when sexuality, intimacy, and reproduction are central. A young adult is supposed to attract a mate and reproduce. However, the young adult with cancer may feel or look unattractive, may be uninterested in or unable to have sex, and may be infertile. A feeling of impotence can pervade.

Most patients are in a relationship or hope to be in one. However, the relationship will be tested by the strain of the cancer diagnosis and its therapy. Patients may wonder whether the partner stays in the relationship out of guilt or sympathy. Some significant others may feel ignored by medical staff because they are not formally a "family member." After treatment, commitment to the relationship in the face of fear of relapse or infertility can be difficult for both parties. Those contemplating having children often worry about passing on a genetic predisposition to cancer.

A wide range of financial situations is seen in the young adult population. Some patients are still happily dependent on their parents. Some are just striking out on their own but, without a long-standing job or savings, may have to return to dependence on parents or get public assistance. Others are trying to begin a career, but long work absences threaten their job security or growth. As stated above, this age range is the most medically uninsured. As a result, many young adult patients incur high medical bills, and at a time in life when they may least be able to afford them. Future insurability is certainly a stressful issue for all of these patients.

Medical professionals caring for the adolescents and young adults may be used to the psychosocial problems more common in either younger children or older adults. Extra effort, including patient and family support groups specifically geared to this age bracket, should be made to uncover and address these needs, to increase compliance, reduce stress, and improve the quality of life during cancer therapy. Established theories of developmental behavior should be used to systematically improve our care of these patients. As Christine Eiser states, "only by seeing adolescents with cancer as adolescents will we ultimately be acceptable as sources of support" [50]. Only by seeing young adults with cancer as young adults will we ultimately be able to optimize their care.

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