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.
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