Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale

This study compares the self-assessments of 67 late-stage HIV/AIDS patients regarding their symptomatology, sense of self-worth, and several other aspects of their health-care situation, to assessments of that situation provided by their informal caregivers. As part of a dyadic study of care preferences, the patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale, a short 10-item measure of the patient's current health, social, and psychological status. The participants in the study were recruited from inpatient and outpatient services at an urban medical center. Substantial or moderate agreement, assessed by weighted kappa, was found between patient and caregiver assessments with regard to only four items assessing physical or emotional states of the patient (pain, other symptoms, anxiety, and life worthwhile). Fair or slight agreement was found for the six remaining items, including those assessing the patient's sense of self-worth, family/friends' anxiety, interactions with family/friends, and practical matters. Mean ratings of self-worth were significantly different for patients and caregivers. These findings underscore the clinical need to assess patient care outcomes directly, and they suggest the importance of facilitating more effective communication about relevant health issues among seriously ill patients, caregivers, and health-care providers.