Rheumatology, Allergy and Immunology, Massachusetts General Hospital, Bulfinch 165, 55 Fruit Street, Boston, MA 02114, USA.
Bone. 2011 Feb;48(2):281-5. doi: 10.1016/j.bone.2010.09.021. Epub 2010 Sep 19.
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.
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.
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.
Ambulatory population.
Any patient with PDB living in New England was eligible to enroll; 285 elected to participate, mean age 73.2 years.
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.
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.
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.
佩吉特病（PDB）是一种骨骼代谢局部紊乱的疾病，受影响骨骼过度生长，导致这种疾病的骨骼并发症。
本研究检查了患者对 PDB 骨骼分布的了解程度，并将其与他们报告的并发症和生活质量相关联。
新英格兰 PDB 登记处（NRPD）是一个自愿登记处，有一个与放射数据库相关联的问卷。从 2001 年开始通过邮件收集数据。
门诊人群。
居住在新英格兰的任何 PDB 患者都有资格参加；有 285 人选择参加，平均年龄为 73.2 岁。
患者被问及 PDB 受哪些骨骼影响，以及他们是否患有 PDB 并发症。寻找放射学研究来证实他们的回答。还进行了 SF-12 测试。
与一般人群相比，他们报告的身体健康水平明显较低（生理成分评分（PCS）平均值=40），心理健康水平略高（心理成分评分（MCS）平均值=52）。在疾病存在的一致性方面，他们的意见更一致，而在不一致性方面，他们的意见更少（p=0.001）。当发生畸形、骨折和关节置换时，放射学研究支持 PDB 并发症的存在，但当报告头痛或听力损失时，相关性较低。
大多数 PDB 患者都知道他们疾病的骨骼分布；在归因于 PDB 的并发症与放射学上存在 PDB 之间存在合理的相关性，但当报告头痛或听力损失时除外。
