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  • Title: Paget's disease of bone: the skeletal distribution, complications and quality of life as perceived by patients.
    Author: Seton M, Moses AM, Bode RK, Schwartz C.
    Journal: Bone; 2011 Feb; 48(2):281-5. PubMed ID: 20858558.
    Abstract:
    CONTEXT: Paget's disease of bone (PDB) is a focal disorder of bone metabolism with overgrowth of affected bone resulting in the skeletal complications of this disease. OBJECTIVE: This study examines what patients know about the skeletal distribution of their PDB, and correlates this with their reports of complications and quality of life. DESIGN: The New England Registry for PDB (NRPD) is a voluntary registry with a questionnaire linked to a radiographic database. Data were collected by mail beginning in 2001. SETTING: Ambulatory population. PATIENTS: Any patient with PDB living in New England was eligible to enroll; 285 elected to participate, mean age 73.2 years. MAIN OUTCOME MEASURES: Patients were asked what bones were affected by PDB, and whether they suffered complications from PDB. Radiographic studies were sought to corroborate their responses. An SF-12 was administered. RESULTS: Compared to the general population, they reported substantially lower levels of physical health (Physical Component Score (PCS) mean=40), and slightly better mental health (Mental Component Score (MCS) mean=52). There were more instances of agreement on disease presence and fewer instances on disagreement (p=0.001). Radiographic studies supported the presence of a complication from PDB when deformity, fracture and joint replacement had occurred, but were less correlative when headache or hearing loss was reported. CONCLUSIONS: Most patients with PDB are aware of the skeletal distribution of their disease; there is a reasonable correlate between complications ascribed to PDB and the presence of PDB on the radiograph except when headache or hearing loss is reported.
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