Little is known about how Paget's disease of bone affects quality of l
ife, 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 str
atified to examine the effects of specialist availability, Nine hundre
d and fifty-eight persons responded to the questionnaire (53% response
rate after adjustment for death, incorrect addresses, and nondelivera
ble 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 hi
gh 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 me
ntioned complications were hearing loss (37%) and bowed limbs (31%), C
omorbidity included arthritis (64%), hypertension (32%), and heart pro
blems (28%), Nearly half (47%) reported feelings of depression, and 42
% said that their health was fair or poor, Only 21% reported that qual
ity of life was very good or excellent, In multiple partial F-test reg
ression analyses, variables were divided into four domains (social, ps
ychological, 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 th
e care domain explained 1%, The importance of the psychological aspect
s of Paget's disease suggests that treatment protocols should include
psychological intervention to improve quality of life.