Paget's disease of bone and quality of life

Abstract

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.

Prevalence of Pelvic Paget's Disease of Bone in the United States

“…(1)(2)(3) Despite the impact of this disease on the population and the health care system, there are only few, mostly isolated hospital-based studies, that address the prevalence of Paget's disease of bone in the United States and the true prevalence of Paget's disease in the United States (or elsewhere) remains unknown.…”

Demographic and Clinical Features Related to a Symptomatic Onset of Paget’s Disease of Bone

“…Other possible complications of PDB can be related to joint involvement inducing secondary osteoarthritis, and nervous system involvement with neurological compression syndromes; in rare cases, a sarcomatous degeneration of Paget bone has been described [1][2][3][4] . The typical signs and symptoms of PDB and its complications may affect the quality of life of the patients, resulting in significant disability 5,6 . Clinical series from hospital referral centers usually involve a high rate of symptomatic patients such as those recognized because of clinical manifestations that lead to the diagnosis, but it is generally accepted that most patients (up to 95%) are asymptomatic and often undiagnosed 7 .…”

Modifications to Nano- and Microstructural Quality and the Effects on Mechanical Integrity in Paget's Disease of Bone

“…(22) Epidemiological studies have quantified fracture risk in cohorts of patients with PDB. (10,(23)(24)(25)(26) Various studies have found a slight to no increase in overall fracture risk (because PDB localizes at one or more skeletal sites, it is important to differentiate between fracture risk at pathological bone sites and overall fracture risk) in patients with PDB. (23,24) However, higher rates of fracture have been reported through pathological bone, even after bisphosphonate treatment.…”