Patient-reported family distress among long-term cancer survivors

Two quality of life studies at the University of Nebraska Medical Center and 3 similar studies in the nursing literature were compared regarding family distress to illness scores as reported by long-term cancer survivors. All studies were cross-sectional mail surveys and used City of Hope National Medical Center questionnaires. Participants represented a broad range of survivorship in terms of diagnosis and length of survival (range of means 3Y8 years). Single-item scores were compared among participants regarding the item "How distressing has your illness been for your family?" Significant levels of patient-reported family distress to illness were reported in all 5 studies. Patient survivors may have been able to recall past levels of significant family distress despite prolonged survival or they may have reported significant ongoing family distress as a result of their disease and treatment. Longitudinal assessment of patients' and families' quality of life is essential throughout survivorship. Future studies should identify and compare the types distress experienced by patient survivors and families over time and also measure the intensity of their distress. Interventions designed to meet their individual and collective needs, thereby decreasing their distress, are needed to improve quality of life for survivors and families.