Problems in Psychosocial Adaptation in Long-term Survivors of Hodgkin's Disease
ABSTRACT & COMMENTARY
Synopsis: In this study, 21% of patients with Hodgkin's disease had distress scores on the Brief Symptom Inventory that were greater than 1.5 standard deviations above the norm; 14% of patients with acute leukemia were that high. Hodgkin's disease survivors also reported greater fatigue, greater conditioned nausea, greater impact of cancer on their family life, and poorer sexual functioning than acute leukemia survivors.
Source: Kornblith AB, et al. Ann Oncol 1998;9: 297-306.
In recent years, increased attention has been focused on the medical problems that affect patients cured of malignancy. For example, in Hodgkin's disease, the high risk of second solid tumors and premature cardiovascular mortality related to the use of radiation therapy has prompted a major reassessment of the approach to curative treatment-some groups are cutting down on radiation fields and radiation doses while adding chemotherapy to try to maintain high cure rates and other groups are omitting radiation therapy in all patients except those with bulky mediastinal masses.
Less attention has been paid to issues of psychosocial adaptation in cured patients. This is a byproduct of several factors; our preoccupation with recurrence of the primary disease, concerns about life-threatening late complications, and the absence of tools to assess psychosocial adaptation in a standardized, reproducible, and time-efficient manner. Patients who undergo high-dose therapy with stem cell transplantation have been studied and reported to have good long-term adjustment to life after treatment in the vast majority of cases. However, a lack of standardized assessment tools has hampered the ability to compare results reported on different populations.
Factors influencing the lives of cured patients are diverse. Some relate to the effects of the disease or the effects of treatment. Some relate to the individual patient's ability to cope with stress. Some are completely external to the patient, such as a fear on the part of employers that a cured cancer patient may not be able to work as hard as someone who has not had cancer or may take greater liberties with sick leave privileges. Some insurance companies practice overt discrimination against cancer survivors. These are issues common to all cured patients. However, in addition to these potential problems common to all cancer patients, there may be pscychosocial problems that are specific to a particular type of cancer and/or its treatment.
Investigators from Cancer and Leukemia Group B (CALGB) conducted telephone interviews with 273 patients with Hodgkin's disease a median of 5.9 years post-treatment and 206 patients with acute leukemia a median of 5.6 years after treatment. All had been treated on CALGB protocols. This number of patients represents about 75% of the eligible patients in both disease groups. The questionnaires administered to patients included the following: Psychosocial Adjustment to Illness Scale-Self Report (PAIS-SR), Profile of Mood States (POMS), Brief Symptom Inventory (BSI), Impact of Event Scale (IES), Sexual Function Related to Cancer Index, Global Sexual Satisfaction Index, Conditioned Nausea and Vomiting Indices, Employment and Insurance Problems Indices, Sociodemographic Characteristics, and Perceived Negative Socioeconomic Impact Index.
Although both groups of patients had dominantly been treated with chemotherapy, differences in the groups were noted: more men were in the group with Hodgkin's disease; older median age in the group with acute leukemia; and about 70% of the patients with leukemia had children, compared to 50% of patients with Hodgkin's disease. The groups were similar in marital status, education levels, and income.
Hodgkin's disease survivors reported greater impact of cancer on their family life and sexual relationship with spouse or partner and reduced energy levels compared to acute leukemia survivors. Male Hodgkin's disease survivors had significantly greater psychological distress than male leukemia survivors, and female Hodgkin's disease survivors had greater hostility and somatization scores than female leukemia survivors. The prevalence rate of high distress in the general population is said to be around 7%. In acute leukemia survivors, the prevalence was 14% (twice the expected rate), and, in Hodgkin's disease survivors, it was 21% (three times the expected rate). The magnitude of vocational and insurance problems attributable to having cancer was similar in the two groups.
In one sense, this study reinforces our hopes for our patients in that at least 80% of the cancer survivors are functioning well by self-report. However, an important subset of patients has persistent problems at a greater rate than the normal population, including psychological distress, problems with work and insurance, and sexual dysfunction. Yet, even beyond these problems related to having survived cancer in general, this study points out that there are disease-related increases in psychosocial maladaption, including psychological distress, poorer sexual functioning, greater fatigue, and greater conditioned nausea in response to cues related to their chemotherapy treatment in Hodgkin's disease survivors compared to acute leukemia survivors.
The results suggest that additional resources should be dedicated to developing support programs for patients after they complete treatment for cancer. From all indications, the support groups that focus on getting patients through treatment are beneficial. Support groups for the long-term survivors are just beginning to appear.1 As recommended by the CALGB authors, it would seem that a comprehensive program should include both the survivor and friends and family members and include both education and counseling features in both group and individual settings. This is eminently reasonable. The question is: how will this get paid for?