Quality of life in end-stage renal disease patients: differences in patient and spouse perceptions

Spouses and other proxies consistently rate patient quality of life (QOL) lower than patients rate it themselves. This pattern has been observed in end-stage renal disease (ESRD), cancer, stroke and other chronic illnesses, but it has not been explained. The purpose of the current paper is to examine similarities and differences in spouse and patient ratings of the QOL of patients with ESRD.

Patients with ESRD and their spouses participated in baseline and one-year follow-up interviews. Both patients and spouses rated the patient's QOL, mood, functional ability, subjective health, and kidney disease symptoms. Spouses also rated their own QOL.

Spouses rated all patient characteristics, including QOL, as worse than did the patient. Change in perceptions of patient's mood and their subjective health predicted both patient and spouse ratings of patient QOL. Change in spouse's perceptions of patient's functional ability predicted spouse ratings of patient QOL, but not the patient's own ratings. Finally, change in the spouse's own QOL explained additional variance in their rating of the patient's QOL.

Patients and spouses perceive patient QOL and predictors of patient QOL differently. Implications include the need to be aware of negative bias in spouse ratings of patients of QOL and other psychosocial variables, especially when spouse perceptions are considered by health care professionals. Discussing differences in patient and spouse perceptions in clinical settings with both patients and spouses will allow for a more comprehensive understanding of patient status.