Paget's disease of bone and quality of life

Little is known about how Paget's disease of bone affects quality of life. To better understand the relative impact of factors on quality of life, we mailed a brief survey to 2000 people randomly selected from the Paget's Foundation mailing list. The sample was geographically stratified to examine the effects of specialist availability. Nine hundred and fifty-eight persons responded to the questionnaire (53% response rate after adjustment for death, incorrect addresses, and nondeliverable mailings). The sample had equal proportions of males and females, with a mean age of 74 years (SD = 9.0). Most (97%) were white, with high levels of education (mean 13 years; SD 3.7) and income (60% earned more than $20,000 annually). They reported pagetic bone in the skull (34%), spine (35%), pelvis (49%), and leg (48%). The most frequently mentioned complications were hearing loss (37%) and bowed limbs (31%). Comorbidity included arthritis (64%), hypertension (32%), and heart problems (28%). Nearly half (47%) reported feelings of depression, and 42% said that their health was fair or poor. Only 21% reported that quality of life was very good or excellent. In multiple partial F-test regression analyses, variables were divided into four domains (social, psychological, care, and biomedical). The psychological domain explained 19% of the variance beyond that explained by all other variables; the social domain explained 3%, the biomedical domain explained 3% and the care domain explained 1%. The importance of the psychological aspects of Paget's disease suggests that treatment protocols should include psychological intervention to improve quality of life.