Ethical And Emotional Aspects

Physicians should recall that a diagnosis of CLL can have a devastating effect on the pateint's quality of life, independently of age, clinical stage, and the therapy requirements. A leukemia diagnosis at a relatively young age may cause worries about the future course of the disease, the need for therapy, the potential complications, the ability to face professional and familial engagements, and, most of all, the risk of premature death. This is particularly so in light of the progressive increase in mean life expectancy. Patients with a diagnosis of CLL need to be helped to accept their new reality, which is related to the diagnosis of a chronic but incurable disease. Adequate and detailed information should be given to the patients and their families. Because of the high heterogeneity of this form of leukemia, each patient will have his or her own clinical picture, which depends on the stage and clinical activity of the disease.

The nature of the disease, the different clinical profiles and patterns of outcome, and the need for therapy or only clinical observation should be explained clearly. Providing detailed information is paramount for an optimal clinical management of patients and for preserving a good quality of life. Patients with early disease are usually encouraged not to modify their usual life style; in approx one-fourth of patients, life duration of cases, may be similar to that of nonaffected individuals of the same age and sex. However, patients with early-stage disease should also be informed about the possibility of disease progression, which in about half of cases justifies periodic clinical assessment. A normal social and family life should also be recommended for patients requiring therapy. Because of the chronic course of the disease, it is usually not hard for the physician to arrange a treatment strategy compatible with an active life style.

If therapy is required, the treatment strategy should be clearly explained. In particular, patients need to know their life expectancy and be given clear information about the potential objectives and risks of intensive therapies. The physician's clear explanations can form the basis of participation in clinical trials, which should be encouraged. However, in the treatment choice, managing physicians should also take into account the expectations of the patient. A good physician-patient relationship is essential both for the emotional needs of patients and as the basis for an optimal therapeutic management with patient cooperation.

Some specific points need to be discussed clearly. Many patients are afraid they will transmit the leukemia to their partner or family members. They need to be reassured that CLL is not infectious or transmissible. Younger patients also need to know that birth control should be practiced during chemotherapy because of the potential effects of purine analogs and intensive chemotherapy on the fetus. Information on the substantial risk of transient or permanent infertility after chemotherapy should also be given. Thus, patients aware of the life expectancy related to the diagnosis of CLL who wish to procreate should be informed about procedures to circumvent sterility. Only anecdotial cases concerning pregnancy during CLL have been reported (52). Thus, relatively limited information on the risks for the child and for the affected patient is available.

The uncertainty and the inability to plan long-term projects following the diagnosis of CLL may induce a different pattern of psychological responses, such as denial, anxiety, despair, and depression. A pre-existing quiescent psychological distress may be activated by anxiety and depression (53). Patients who are potentially at risk of psychological distress should be identified and considered for psychological support and/or treatment, which may considerably improve their quality of life and compliance with diagnostic and therapeutic procedures.

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