Patients with cancer and their spouse caregivers. Perceptions of the illness experience

This study focuses on patterns of response between patients with cancer and their spouse caregivers to examine the reliability of spouse informants in research and clinical settings. Thirty dyads (patient with cancer‐spouse caregiver couples; total n = 60) were interviewed concurrently in their homes concerning patient functioning, psychologic distress, physical symptoms, caregiver perceptions of patient functioning, and marriage quality. Couples had been married an average of 32 years. Patients had either the lung or colon as their primary cancer site, and one third had metastasis. Correlations between 14 variable pairs and cross‐tabulation of scale scores suggest that spouse caregivers agree with patients on objective measures with observable referents (e.g., ability to dress independently). Partners disagree on subjective aspects of patient functioning (e.g., depression, fear of future, and confidence in treatment) and marriage quality. Almost without exception, caregivers viewed patients' functioning more negatively than patients described themselves. Patients, however, viewed marital quality more negatively than did caregivers. It was concluded that caregivers can serve as proxies for patients with cancer in research and clinical settings when objective data are sought. Data from both spouses are needed, however, to complete the picture of subjective illness experiences in patients with cancer, including perceptions of pain and disease symptoms. Cancer 1992; 69:1074–1079.