Department of Neurology and Neurosurgery, University of Florida, 3450 Hull Rd., Gainesville, FL 32607, USA.
Parkinsonism Relat Disord. 2012 Dec;18 Suppl 3:S10-4. doi: 10.1016/j.parkreldis.2012.06.014. Epub 2012 Jul 7.
Parkinson's disease (PD) is the second most common neurodegenerative syndrome, classically characterized by levodopa-responsive motor features accompanied by non-motor mood, cognitive, sensory and autonomic issues. Over time, disease burden slowly accumulates resulting in diminished health status. Many clinicians consider the 10 year disease duration mark as significant, however the clinical status and health-related quality of life of patients reaching this milestone have not been well documented.
A cross-sectional study was performed on PD patients with ≥ 10 years disease duration (PD-10) (n = 1835) included in the multicenter National Parkinson's Foundation Quality Improvement Initiative (NPF-QII). Demographic, clinical and health-related quality of life data was analyzed.
PD-10 patients (62.2% male) had a mean age of 67.8 years (± 9.5) with a mean age of PD onset of 52.7 years (± 10.6), and median disease duration 14.3 years (interquartile range 11.5-18.1). Many were minimally disabled with Hoehn and Yahr stage 1 or 2 (44.0%) or experiencing postural instability (HY stage 3, 40.3%). Most (88.2%) were able to stand unaided, but falls were common (54.8%). Almost all were living at home (93.1%) with a family member as a regular caregiver (83.8%). PD-10 patients had an average of 1.9 (± 1.4) co-morbidities, with arthritis (48.9%) and heart problems (31.7%) most commonly encountered. The majority (86.7%) took at least 2 medications: levodopa (95.7%), dopamine agonists (45.6%) and antidepressants (37.3%) were most commonly recorded. Most PD-10 patients were not currently utilizing physical, occupational or speech therapy, although two-thirds reported engaging in physical activity. Deep brain stimulation was documented in 22.4%. Overall the mean health-related quality of life and caregiver burden was impaired in all domains.
Our data on PD patients with at least 10 years disease duration confirmed the younger age of onset of PD, but not the higher proportion of females or rest tremor, or the lower proportion of Caucasians seen in other aged PD cohorts. PD-10 patients had increased disease burden, increased caregiver burden, and impaired health-related quality of life. Although subjects mostly remained independently mobile, balance could be impaired with frequent falls identified. The prevalence of PD-10 patients living at home (93%) was very high in our sample which was drawn from specialty clinics, compared to prior studies reporting up to 27% PD patients institutionalized at 10 years duration. Thus policies to improve in-home support and caregiver support will be crucial in efforts aimed at maintaining patients in a home setting.
帕金森病（PD）是第二常见的神经退行性综合征，其特征通常为左旋多巴反应性运动特征，伴有非运动情绪、认知、感觉和自主问题。随着时间的推移，疾病负担缓慢积累，导致健康状况下降。许多临床医生认为 10 年的疾病病程标志着疾病的重要进展，然而，达到这一里程碑的患者的临床状况和健康相关生活质量尚未得到很好的记录。
对纳入多中心国家帕金森基金会质量改进倡议（NPF-QII）的病程≥ 10 年的 PD 患者（PD-10）（n = 1835）进行了一项横断面研究。分析了人口统计学、临床和健康相关生活质量数据。
PD-10 患者（62.2%为男性）的平均年龄为 67.8 岁（± 9.5），平均发病年龄为 52.7 岁（± 10.6），中位病程为 14.3 年（四分位距 11.5-18.1）。许多患者仅有轻微残疾，Hoehn 和 Yahr 分期为 1 或 2 期（44.0%）或存在姿势不稳（HY 分期 3 期，40.3%）。大多数（88.2%）能够独立站立，但跌倒很常见（54.8%）。几乎所有患者（93.1%）都居住在自己家中，有家庭成员作为常规照顾者（83.8%）。PD-10 患者平均有 1.9（± 1.4）种合并症，最常见的是关节炎（48.9%）和心脏问题（31.7%）。大多数（86.7%）服用至少 2 种药物：左旋多巴（95.7%）、多巴胺激动剂（45.6%）和抗抑郁药（37.3%）。大多数 PD-10 患者目前未接受物理治疗、职业治疗或言语治疗，但三分之二的患者报告进行了身体活动。记录了 22.4%的深部脑刺激。总体而言，所有领域的健康相关生活质量和照顾者负担都存在受损。
我们对病程至少 10 年的 PD 患者的数据证实了 PD 发病年龄较小，但女性比例或静止性震颤比例较高，或白种人比例较低，这与其他年龄较大的 PD 队列中的情况不同。PD-10 患者疾病负担增加，照顾者负担增加，健康相关生活质量受损。尽管大多数患者仍能独立移动，但频繁跌倒可能会导致平衡受损。与之前报道的 10 年病程中有高达 27%的 PD 患者住院的研究相比，我们的样本中在家居住的 PD-10 患者（93%）的比例非常高，这些患者是从专科诊所中抽取的。因此，改善家庭支持和照顾者支持的政策对于维持患者在家中的治疗至关重要。
