Quality of life in adult survivors of lung, colon and prostate cancer.

In a cross-sectional study design, a disease free sample of 57 lung, 117 colon, and 104 prostate cancer survivors who represented short, intermediate and long-term survivors completed a detailed assessment of quality of life (QOL) and rehabilitation needs using the CAncer Rehabilitation Evaluation System (CARES). Demographic and medical data, social support, and a global QOL rating were also assessed. Lung cancer patients showed no differences in QOL with respect to their period of survival. QOL improved for survivors of colon cancer as they lived for longer periods, but declined with time for survivors of prostate cancer. The best predictor of QOL for all groups was KPS, although other variables such as type of hospital, gender, and work status were predictive for survivors of colon cancer. For survivors of prostate cancer comorbidity with other medical illnesses, time since diagnosis and comorbidity due to psychiatric difficulties were predictive of QOL. All groups had significant rehabilitation problems in the domains of physical, psychosocial, sexual, medical interaction, and marital relationships. Lung cancer survivors had more problems than the other cancer survivors. We conclude that patients who survive cancer do not return to a state of normal health. They demonstrate a variety of difficulties with which they must cope as they continue to survive. Greater efforts need to be made early in diagnosis and treatment to understand rehabilitation problems and target interventions in the hope of reducing later sequelae.

Predicting psychosocial risk in patients with breast cancer.

Breast cancer is the most common neoplasm in North American women. The psychosocial impact of breast cancer has been extensively studied, and a number of investigators have attempted to characterize women who are at high risk for increased psychosocial morbidity. Although a detailed interview performed by a professional is the clinical standard for psychosocial assessment, such interviews are usually time-consuming and expensive, and thus are rarely performed. This study was designed to develop a strategy for the rapid identification of newly-diagnosed breast cancer patients at risk for psychosocial morbidity. A sample of 227 newly diagnosed breast cancer patients were interviewed systematically by a clinical social worker and were subsequently classified for risk of psychosocial distress in the year after diagnosis. In addition, these women completed a battery of standardized instruments designed to assess quality of life, rehabilitation needs and psychological distress. A logistic regression procedure was used to examine a wide range of variables for their ability to correctly classify the risk of psychosocial distress in this sample. The final model included the Cancer Rehabilitation Evaluation System (CARES) Psychosocial Summary Scale, the Karnofsky Performance Status score and age as the best predictors of psychosocial risk. Subsequently these three variables were used to construct a clinically usable risk prediction model. Additional research should be performed to validate this predictive model.

Characteristics of women at risk for psychosocial distress in the year after breast cancer.

PURPOSE: To provide a detailed description of rehabilitation problems of women, considered to be low risk and at risk for psychosocial morbidity, diagnosed with stage I and II breast cancer 1 month and 1 year after primary treatment. PATIENTS AND METHODS: A sample of 227 newly diagnosed breast cancer patients were systematically interviewed by a clinical social worker and classified for risk of psychosocial distress in the year after diagnosis. They completed a battery of standardized instruments to assess quality of life (QL), rehabilitation needs, and psychologic distress. The primary QL instrument, the Cancer Rehabilitation Evaluation System (CARES), provides a detailed listing of rehabilitation needs. Descriptive CARES data are presented with comparisons between the two groups. RESULTS: The at-risk women had significantly more problems with greater severity than the low-risk women in all areas (physical, psychosocial, medical interaction, sexual, and marital). While both groups showed improvement over the year following diagnosis, the at-risk group had significantly more problems 1 year later. Many physical problems subside, but problems at the local surgical site, psychologic distress, communication with marital partners, and negative body image are more persistent in the at-risk group 1 year later, while half of both groups continue to have sexual dysfunction. CONCLUSION: The detailed listing of problems provided by the CARES may be helpful to clinicians in their interactions with patients. The need for preventive and early intervention for the at-risk patients is underscored.

Describing the health-related quality of life impact of HIV infection: findings from a study using the HIV Overview of Problems--Evaluation System (HOPES).

This study aimed to describe the results of findings from data collected with an HIV-specific health-related quality of life tool, and to examine the relationship between clinical and biological factors and health-related quality of life (HRQL). Data were collected as a cross-sectional, patient-completed assessment of health-related quality of life. Laboratory data were abstracted from the medical chart. Patients (n = 318) with HIV infection including asymptomatic (37%), ARC (20%), AIDS (25%), and AIDS with cancer (18%) were receiving health services at one of the medical centres serving HIV-infected patients in the Los Angeles community, including UCLA, community physicians, Veterans Affairs Medical Centers, and a county hospital. Additional data were contributed by the Johns Hopkins University Medical Center CMV Retinitis Clinic. Symptomatic patients and patients with the lowest CD4 counts reported poorer HRQL than asymptomatic patients and patients with higher CD4 counts. However, medical and demographic variables explained only 35% of the variability of HRQL ratings in this sample of HIV-infected patients. While clinical status and Karnofsky performance status may be used to estimate the impact of HIV infection on HRQL, they are not a substitute for independent assessment of HRQL by the patient.

Assessing the needs and quality of life of patients with HIV infection: development of the HIV Overview of Problems-Evaluation System (HOPES).

OBJECTIVE: To develop and evaluate the psychometric properties (reliability, validity etc.) of a comprehensive Quality of Life (QOL) tool, for patients infected with the human immunodeficiency virus (HIV), that was adapted from a previously validated cancer tool. DESIGN: Cross-sectional, patient completed written surveys and interviews. SETTING: The Medical Centers serving HIV infected patients in the Los Angeles community including UCLA, community physicians, Veterans Affairs Medical Centers, and a County hospital: and additional data contributed from Johns Hopkins University Medical Center CMV Retinitis Clinic. PATIENTS: Patients (n = 318) with HIV infection including asymptomatic (37%), ARC (20%), AIDS (25%) and AIDS with Cancer (18%) receiving health services at one of the above sites. MEASUREMENTS: The patients self-administered the newly developed instrument, the HOPES (HIV Overview of Problems-Evaluation System), other QOL related tools including the Medical Outcomes Study instrument adapted for HIV (MOS-HIV) the Profile of Mood States (POMS), the Perceived Adjustment to Chronic Illness Scale (PACIS), and the Physical Activity Scale (PAS). Brief interview to assess the Karnofsky Performance Status Score (KPS). Measured sociodemographic characteristics included age, sex, race, HIV risk factor, education etc. Assessed medical history, current medications, HIV clinical classification. MAIN RESULTS: The sociodemographic and medical characteristics of the sample resemble those of the general population with HIV infection in this geographic area: 96% male, 28% nonwhite, 84% homosexual contact as risk factor, 75% receiving antiretroviral therapy. The adaptation of the cancer QOL instrument to HIV appears to have face and content validity according to patients and health professionals who care for HIV infected patients. Analyses of the psychometric properties found that the HOPES has a similar structure to its parent instrument following factor analyses which results in five summary scales representing the Physical, Psychosocial, Medical Interaction, Sexual and Significant Other/Partners domains in addition to a Global Score. Internal consistency of 35 subscales is high with a mean alpha coefficient of 0.82. Correlations of the HOPES summary scales with other QOL instruments are in the predicted directions. Comparing patients within the HIV clinical diagnostic categories on the HOPES Global, Physical, and Psychosocial Summary Scales indicates that Asymptomatic Patients have better QOL than symptomatic patients. This finding is also found in the other QOL instruments which provides evidence of construct validity. CONCLUSIONS: The HOPES is an excellent tool for identifying the problems and needs of patients with HIV infection and for assessing their quality of life. It is reliable, valid and acceptable to patients. The tool may be especially useful in developing a normative data base.

Exploring the influence of multiple variables on the relationship of age to quality of life in women with breast cancer.

This paper explores the relationship between age, psychosocial status and quality of life in a community based sample (n = 229) of newly-diagnosed breast cancer patients. A casement display methodology is used to examine the influence of demographic and medical variables on the outcome variables of interest (psychosocial status and quality of life) and their relationship to age. Based on the literature, a positive relationship between age and psychosocial status was predicted, but the relationship between age and quality of life was uncertain. For the whole sample, a weakly positive relationship between age and measures of psychosocial status and quality of life was observed. In the exploratory studies using the casement plots, the positive relationship between age and quality of life was most strong and significant in married women and in women who had received segmental mastectomy. Among sub-groups examined according to marital status and type of surgery, a positive relationship between age, psychosocial status and quality of life was observed only in married women who received segmental mastectomy. Additional preliminary observations were made about the relationship of household income and age to the outcome variables being studied. The casement plot methodology permits the simultaneous evaluation of multiple variables as a preliminary step before hypothesis development and should be considered when complex clinical problems are being evaluated.

The CARES: a generic measure of health-related quality of life for patients with cancer.

In spite of the prevalence of neoplastic disorders as a cause of chronic illness, very few of the currently available generic measures of health-related quality of life or health status have been utilized with cancer patients. In this paper we reviewed our studies with the Cancer Rehabilitation Evaluation System (CARES), a cancer-specific measure of rehabilitation needs and quality of life. We present data to demonstrate that the CARES is a generic measure of health-related quality of life, suitable for use in the many different diseases called cancer. The data that form the basis for this paper were collected during a decade of research on the CARES. This paper represents the first discussion of the performance of the CARES across separate cancer sites and phases of the disease. In addition, we demonstrated that the CARES is responsive to changes in health-related quality of life over time. Finally, we will discuss the application of the CARES in clinical and research settings.

CAncer Rehabilitation Evaluation System--short form (CARES-SF). A cancer specific rehabilitation and quality of life instrument.

The CAncer Rehabilitation Evaluation System (CARES) (CARES Consultants, Santa Monica, CA) a rehabilitation and quality of life instrument with well-documented reliability and validity, has been shortened. This report describes the development and psychometric properties of the new instrument, the CAncer Rehabilitation Evaluation System--Short Form (CARES-SF). The data from four existing samples of cancer patients demonstrate that the CARES-SF is highly related to the CARES (r = 0.98), has excellent test-retest reliability (86% agreement), concurrent validity with related measures, and acceptable internal consistency of summary scales (alpha = 0.85 to 0.61). In a new sample of breast cancer patients evaluated at three points in time (1 month, 7 months, and 13 months after diagnosis) the instrument appears to be sensitive to change and is highly related to the Functional Living Index--Cancer (FLIC), an existing quality of life instrument. The authors conclude that the CARES-SF has excellent potential as a quality of life instrument for use in clinical trials.

Development of a comprehensive quality of life measurement tool: CARES.

The authors present a cancer specific rehabilitation and treatment planning questionnaire and a computer scoring and reporting evaluation system, the CARES. CARES stands for CAncer Rehabilitation Evaluation System. It is a unique instrument and research to date suggests that it is comprehensive, reliable, valid, and pertinent to patients' quality of life, as they live with cancer. The CARES provides a cost-efficient method of evaluating patients' needs and can serve as a valuable adjunct to medical care. The CARES has been adapted for research settings as well, and has a short form for multiple administrations. Finally, a computer scoring and professional reporting system is available to clinicians with access to IBM compatible personal computers.

Assessing the quality of life--a study in newly-diagnosed breast cancer patients.

Quality of life (QL) assessment is an increasingly important component of clinical research, especially with cancer patients. The literature strongly supports the view that QL should be assessed by the patient rather than the clinician. While clinical parameters such as performance status or toxicity ratings may bear some relationship to QL, they are not a substitute for its measurement. In spite of these observations, clinicians have been reluctant to accept the need for patient-rated measures of QL. In this paper, data from a sample of 109 newly-diagnosed breast cancer patients were used to examine the relationship between expert-rated measures and a patient-rated measure of QL; to determine whether the Cancer Rehabilitation Evaluation System (CARES), an instrument for assessing the rehabilitation needs of cancer patients, is a measure of QL; to explore whether there are any medical, social or demographic variables which the clinician can use to predict how patients assess their QL; and to determine which variables (expert-rated scales, medical, social or demographic variables, or rehabilitation needs) have the most effect on how patients evaluate their QL. In this sample, patient ratings of QL were widely distributed and were only moderately correlated with the expert-rated Karnofsky Performance Status (r = 0.53) and Global Adjustment to Illness Scale (r = 0.59). In addition, there were no significant correlations between important clinical variables (axillary node status, type of surgery, receipt of chemotherapy) and patient-rated QL. Among the clinical variables and instruments studied, the Global CARES score demonstrated the best correlation (r = -0.74) with the patient-rated assessment of QL. A stepwise multiple linear regression procedure was performed with QL as the dependent variable in order to identify which factors accounted for the most variance in patient assessment of QL. The potential predictor variables used in this procedure were chosen from among those that would be available to a clinician. The Global CARES score was the best single predictor of QL, accounting for 55% of the variance, followed by Karnofsky Performance Status, the Medical Interaction and Sexual summary scales of the CARES, and the patient's educational status. Data from the CARES provided additional descriptive information about the type and frequency of rehabilitation problems experienced by these patients in relation to their ratings of QL.(ABSTRACT TRUNCATED AT 400 WORDS)

Assessing problems of cancer patients: psychometric properties of the cancer inventory of problem situations.

Evaluated the psychometric properties of the Cancer Inventory of Problem Situations (CIPS), a cancer-specific survey instrument designed to assess day-to-day problems and rehabilitation needs of cancer patients. A heterogeneous group of 479 cancer patients participated in the research. The substructure of the CIPS was investigated using factor-analytic techniques. The CIPS was factored into 31 clinically useful subscales. Further analyses led to five higher order factors representing the physical, psychosocial, medical interaction, marital, and sexual problem areas characteristic of cancer and its treatment. Internal consistency of all the scales was high (mean alpha = .81). The test-retest reliability and validity of the instrument were also studied in a sample of 120 patients. Analyses of items, subscales, higher order factors, and total CIPS scores suggest excellent reliability. The pattern of correlations of the CIPS with other measures (psychological distress; physical, marital, and sexual functioning; and quality of life) provided preliminary evidence of concurrent, discriminant, and convergent validity. The CIPS appears to have sound psychometric properties and fills an important gap in the assessment of cancer patients for both clinical and research purposes.

Helping patients cope with cancer.

Oncologists and oncology nurses are in a unique and important position to help patients cope with the many stressful aspects of cancer. Oncology professionals can provide tremendous help to patients and their families by: 1. Being aware of the emotional, cognitive, behavioral, and social problems that patients and their families commonly experience as they adjust to cancer; 2. Encouraging patients to communicate freely about their current problems and their fears for the future; 3. Listening to these concerns and providing information about the normalcy of these reactions; 4. Providing specific suggestions for coping, when needed, based on knowledge of the successful coping efforts of others; 5. Making referrals to mental health professionals when these more limited interventions fail to provide sufficient help. We summarize reactions and difficulties that are common among cancer patients at six stages of the disease and we suggest interventions that may be helpful to patients as they cope with and adjust to these difficulties.

Anxiety in medical situations: adult cancer patients.

Anxiety associated with medical situations was studied in a heterogeneous sample of 320 adult cancer patients. Patients completed the Cancer Inventory of Problem Situations, which identifies anxiety in a variety of medical situations. On the average, 44% of patients reported some anxiety in medical situations; 23% reported significant anxiety. Anxiety was somewhat situation dependent. Females were more likely to report anxiety and with greater intensity than males in situations such as watching other patients receive treatments, waiting to see the doctor, waiting to find out the results of tests, going to the hospital, and receiving chemotherapy. Multiple regression techniques were used to identify the correlates of anxiety. Age, sex, problems communicating with the health team, and global adjustment to the illness all accounted for a significant amount of the variance. The results suggest important areas for mental health professionals to be involved in the care of individuals with cancer if comprehensive care is to be provided.