Social environment and social support.

Research on the relevance of social support to cancer has been plentiful since the first American Cancer Society workshop on methodological issues in behavioral and psychosocial science. Nonetheless, critical shortcomings continue to characterize the attempt empirically to establish such things as the extent to which social support predicts adjustment to cancer diagnosis and treatment. Prominent among these is the failure to adequately address large elements of the social structure, such as social class and urbanization, and to investigate how they shape the well being of persons with or at risk for cancer and their caregivers. We recommend that more psychosocial research on the link between social support and cancer be conducted within populations beset by poverty and without adequate access to health care. Funding is needed for the training and maintenance of multidisciplinary and multicultural teams of researchers working within community-based organizations and hospitals serving the underserved.

Cancer during adolescence.

Specific developmental issues and long-term psychosocial implications are associated with a diagnosis of cancer during the period of adolescence. Effects on the adolescent's developing independence, sexual identity, and social and psychological maturity must be considered. Repercussions of these disruptions emphasize the need for creative treatment approaches which incorporate both immediate and long-term preventive and rehabilitative strategies.

A performance status scale for head and neck cancer patients.

Effective assessment of treatment outcome and the development of successful rehabilitation for head and neck cancer patients demand an evaluation of the relevant parameters of functional status. This paper reports the development and testing of a new Performance Status Scale for Head and Neck Cancer Patients designed to assess the unique areas of dysfunction experienced by this population. The instrument is a simple, practical, clinician-rated assessment tool consisting of three subscales: (1) Understandability of Speech, (2) Normalcy of Diet, and (3) Eating in Public. The scale was administered to a group of 181 head and neck patients and a comparison group of 30 breast cancer patients. Results indicate that the scale is reliable across raters and sensitive to functional differences across a broad spectrum of head and neck cancer.

The measurement of performance in childhood cancer patients.

The performance status of the child with cancer is an important outcome consideration in pediatric oncology research and practice. However, no single measure for children has been available. This is a report of the development and standardization of such a scale. The play-performance scale for children is a parent-rated instrument which records usual play activity as the index of performance. Performance status ratings were obtained on three groups of children: patients (n = 98), patients' siblings (n = 29), and an independent sample of hospital employees' children (n = 40). Children with all types and stages of childhood malignant neoplasms were represented. Test results established the parent as a competent, reliable rater and demonstrated the validity of the scale. Interrater reliability was examined using correlational statistics and percentage agreement. Agreement between parents was good, and there were no systematic rater biases. In addition, parents' ratings significantly discriminated differences in levels of functioning (mean score, patients 75.4 versus siblings 97.4). Correlational and analysis of variance (ANOVA) procedures demonstrated that the play-performance scale was significantly related to the global performance measures of experienced clinicians and was sensitive to change. Inpatients received a mean score of 42.3, outpatients 90.7, and normals 98.2. These findings indicate that the scale is both feasible and effective. It is concise, can be administered repeatedly even to extremely ill patients, and uses parents as observer reporters. The play-performance scale for children provides quantifiable, reproducible, and meaningful data, which is necessary for effective monitoring and management of the child with cancer.

The high cost of cancer.

Anxiety about managing the financial costs of cancer is equaled only by fear of the disease itself. In addition to the rising cost of medical care, nonmedical costs contribute a large share of the financial burden. A number of studies, which are reviewed in this article, document the significance of costs incurred in the areas of food, family care, clothing, transportation, lodging and other miscellaneous items, and, in addition, loss of wages. Four factors account for variability in financial cost: level of care, performance status of the patient, family size, and distance from the hospital. Concern is expressed about the high cost of cancer treatment and the question posed as to who should be responsible for payment.

Psychiatric syndromes in pediatric oncology patients.

While all these problems have been seen in pediatric cancer patients, and some may occur more frequently than in the general population, it is worth reemphasizing that the majority of patients and families are psychiatrically intact. They are generally highly resilient and resourceful in coping with this potentially devastating illness. A vigorous program of support groups, recreational therapy, and academics can enhance the patients' and families' ability to function. For those few who develop psychiatric disorders, effective therapeutic intervention is very important in their recovery from both psychiatric and oncologic illness.

Psychosocial consequences of cure.

Survivors of childhood cancer, having overcome the biggest hurdle to a normal life span, must continue to be vigilant toward health care issues as well as toward certain psychological and social problems for which they are at a greater than normal risk. The long-term survivor's knowledge about his/her illness, its treatment, and the consequent need for health surveillance and maintenance practices must be continually updated. Equally important is the survivor's preparation for coping with any long-term consequences of disruption in family, academic, and social activities engendered by cancer treatment. Existing research has frequently focused on patients diagnosed in early childhood. Recent studies, however, suggest that the developmental disruptions may have special significance for the adolescent, who is already struggling with unique issues of separation, changes in peer relationships, emergent sexuality, and future academic and occupational goals. Previous investigations addressing the medical and psychiatric problems encountered by the long-term survivor of adolescent cancer are presented with a focus on current psychological adjustment and degree of emancipation achieved. A recent pilot study, from three major medical centers, collected extensive interview data on a group of long-term survivors and sibling controls. Preliminary analyses of these data are described, and areas for future research are suggested.

Absence of major depressive disorder in female cancer patients.

This investigation evaluated the prevalence of depression in female patients who had cancer in any of five predesignated sites. Five hundred five women aged 17 to 80 (190 with breast cancer, 143 with gynecologic malignancies, 111 with melanoma, 37 with bowel cancer, and 24 with lymphoma) were randomly screened. Assessment included the Hamilton rating scale for depression, the Zung self-rating depression scale, the Karnofsky performance scale, and a 10-cm visual pain analogue line. The results revealed a mean Hamilton of 10.2 (range, 0 to 41; SD, 7.5), a mean Zung score of 35.3 (range, 11 to 68; SD, 9.6), a Karnofsky median score of 80, and a median pain score of 0. Scores on the Zung scale were highly correlated with those of the Hamilton scale (r = .75). Based on cutoff scores accepted as indicating depression (Hamilton greater than or equal to 20 and Zung greater than or equal to 50), patients were depressed. The depressed subgroup was in significantly more pain, experienced greater physical disability, and was more likely to have had prior episodes of depression as compared to the non-depressed women. The two best predictors of current depression were performance status (Karnofsky) and history of depression. No relationship was found between depression and other demographic variables or disease parameters (diagnosis, time since diagnosis, stage or phase of illness, and current treatment). Our findings indicate that the prevalence of major depression in cancer patients is lower than many previous studies have indicated and falls within the range seen in the general population.

Toward the development of a play performance scale for children (PPSC).

Performance scales (i.e., Karnofsky), as they measure quality of life, have been used effectively as an integral part of repeated assessment of adult cancer patients for the last several years. An equally concise measure of performance has not been developed for children. The task of developing a scale to assess performance in infants, toddlers, school-age children, and adolescents is formidable, as the activity measured should be of equal merit at each age level. Although all childhood cancer patients could benefit from a simple-to-administer, rapid assessment, children with brain tumors have the greatest need for a repeated measure of performance. The goal, then, is to develop a simplified set of criteria that can be used for assessment of children with brain tumors during hospitalization, at the time of clinic visits, and/or at the time of diagnostic procedures when the patient is in a reasonable state of health. The assessment should be able to performed by nonprofessional persons.

The long-term effects of cranial irradiation on the central nervous system.

Cranial irradiation and chemotherapy may have significant long-term deleterious effects on children with brain tumors. Intellectual deterioration, endocrinopathies, leukoencephalopathy, extraneural metastases, and oncogenesis may all complicate the treatment of central nervous system neoplasia. These long-term effects of therapy have important implications, as some are amenable to treatment and others may be prevented by the careful monitoring of drug and radiation administration. Until recently, the survivals of children with brain tumors were limited, so that concerns over long-term effects of therapy were unnecessary. As children with certain types of brain tumors now have a better prognosis, these long-term and possibly remediable effects have important implications. This article emphasizes radiation effects on intellect, endocrine function, and oncogenesis. Recommendations for baseline and longitudinal evaluations of children with brain tumors are suggested.

Management of stressful periods in childhood cancer.

There are four major periods of stress for a family having a child with cancer. They are diagnosis, remission, death, and long-term survival. Each of these periods has particular management problems requiring careful assessment and intervention. The author provides such management strategies in this article.

Central nervous system prophylaxis. Studies showing impairment in verbal skills and academic achievement.

School attendance and school achievement were the parameters studied to assess the pediatric cancer patient's ability to learn and keep pace with their peers. Effects of CNS prophylaxis, as either intrathecal methotrexate (IT) alone or intrathecal methotrexate given in addition to cranial radiation (CRT), were studied in two groups. A third group of cancer patients who received no CNS prophylaxis, and two comparison groups, siblings and a matched sample of children, also participated in the study. Impairment in central nervous system function was measured by means of psychological testing, neurological examination, and computer-assisted tomography. Patients who received central nervous system prophylactic treatments at an early age had poorer performance on verbal IQ scores, with comprehension and arithmetic subscores being most affected. Patients who received both cranial radiotherapy plus intrathecal methotrexate showed a decrease in six out of seven categories of instruction when grades from the year prior to diagnosis were compared to those obtained 3 years after diagnosis. The combined groups of patients with leukemia had a lower grade point average and poorer school attendance than did the comparison groups.

Childhood cancer. Medical costs.

The financial burden of cancer treatment is a major source of stress for families of children with cancer. A previous study demonstrated that out of pocket nonmedical costs incurred because of the illness were consuming 26% of the weekly budget. A one-month sampling of medical charges were collected for 64 families of children undergoing outpatient treatment of cancer. Families of ten patients who had died also participated; total cancer center medical charges throughout the illness were collected. Monthly charges for living patients varied greatly with diagnosis, ranging from $100 to $1800. Total cancer center charges throughout the illness for the decreased patients ranged from $8000 to $53,000 (mean, +34,558). More than 50% of the charges were incurred in the diagnostic and terminal stages of illness. One sign of the hardship endured by the families was the outstanding debts to the cancer center long after the patient's death. Medical costs constituted an average of 5.8% of the families' weekly budgets. Overall, medical costs to the family were found to be much less than the nonmedical costs incurred during treatment.

Psychological correlates of compliance.

A urinary assay (17 kgs/creatinine) was used to measure compliance in 31 acute lymphocytic leukemia patients under 15 years of age receiving oral prednisone. Demographic data and psychological test responses of patients and their parents were correlated with the urinary assays. Results indicated that while the rate of compliance was the same for boys and girls, the psychological correlates were very different. Parental personality traits and attitudes were more involved with boy's compliance than with girl's. Some of the parent variables associated with compliance in boys were hostility, anxiety, and obsessive-compulsive behavior. Parents described compliant boys as vulnerable. These traits usually are considered maladaptive but in this case appear to facilitate boy's compliance. For girls, far fewer parent variables were associated with compliance. Parents seemed to have less worry and concern about their daughters and presumably give them the responsibility for their own medication. It was the girl's own anxiety which predicted compliance.

Poor drug compliance in an adolescent with leukemia.

Poor drug compliance in pediatric patients is a frustrating problem for it is common, difficult to document, and difficult to change. This report describes an adolescent who was found to be noncompliant in taking his therapy for acute lymphoblastic leukemia. 17kgs assay showed noncompliance with prednisone therapy three times--the third episode thwarting a reinduction attempt. Psychological testing was performed to assess factors that may have contributed to this noncompliance. This patient was found to have low anxiety, excess hostility, borderline intelligence, and a feeling that his fate was predetermined. Intervention therapy was attempted by additional counseling and education about the basic disease, but this was unsuccessful. Drug compliance was eventually achieved only through hospitalization. Identification of psychological factors and clinical situations associated with poor drug compliance is discussed.