Symptom distress in advanced chronic organ failure: disagreement among patients and family caregivers

Abstract Background: Proxy reporting is frequently used to assess symptom distress of patients with advanced chronic organ failure. The aim of the present cross-sectional study was to examine agreement in severity of symptom distress, presence of symptom-related interventions, and satisfaction with medical treatment among patients with advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF) and chronic renal failure (CRF) and their family caregivers. Methods: Outpatients with advanced COPD (n=73), CHF (n=45) and CRF (n=41) and their family caregivers rated severity of physical and psychological symptoms experienced by the patient using Visual Analogue Scales (VAS). The presence of symptom-related interventions was recorded by patients and family caregivers. Finally, patients and family caregivers rated satisfaction with medical treatment of the patient using VAS. Agreement was determined using intraclass correlation coefficients (ICC) for continuous variables and Cohen's kappa for categorical variables. Results: Family caregivers reported a higher number of symptoms than patients (mean [standard deviation; SD]: 8.2 [3.5] versus 7.3 [3.6], respectively [p<0.0005]). For most symptoms, agreement about severity between patients and family caregivers was moderate (ICC: 0.41-0.60). Agreement about satisfaction with medical treatment was fair (ICC [95% confidence interval; CI]: 0.21 [0.05-0.35]). Agreement was poor to moderate for presence of symptom-related interventions (kappa: -0.03-0.54). Conclusions: Studies using proxy reporting reflect the views of proxies and do not accurately represent the patients' experience. For clinical care, it's important to pay attention to the perception from the patient as well as the perception from the family caregiver of symptom distress, presence of symptom-related interventions, and satisfaction with treatment.