Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M
Center for Health Policy Research and Education, Duke University, Durham, NC 27708, USA.
J Am Geriatr Soc. 1997 Jul;45(7):844-9. doi: 10.1111/j.1532-5415.1997.tb01512.x.
To examine the burden of Parkinson's Disease (PD) on society, family, and the individual.
In-home interviews in Central North Carolina.
A cross-sectional, descriptive study.
A total of 109 people with PD.
Standard instruments used to assess income, health status, health-related costs, and household activities.
The sample was weighted toward individuals who were within the first 5 years of post-PD diagnosis.
The total per capita societal burden was approximately $6000 per year, the greatest single element of which was compensation for earnings loss for those less than age 65. Government insurance covered 85% of our sample. The largest components of family burden were the burden of providing informal caregiving and that of earnings loss. Spouses providing informal care did so a mean of 22 hours per week. Compared with a random sample of older people, our respondents spent much less time on house and yard work.
The direct costs of the disease reflect a small portion of the burden. The hidden costs, in the form of lost wages, informal care, and changing roles are substantial. Their magnitude is even more important when we consider that the family generally lives on a fixed income, and the caregiver is an older aged spouse. Medical practitioners will best be able to intervene if they look holistically at the patient with this disease. When treating symptoms themselves, practitioners need to be aware of the high level of pain, fatigue, and depression associated with PD, even in the early stages. The results demonstrate clearly that family relationships are affected early, indicating the importance of providing early referrals to services such as home health, social workers/counseling, and well as PD support groups.
研究帕金森病（PD）对社会、家庭和个人的负担。
在北卡罗来纳州中部进行的家庭访谈。
一项横断面描述性研究。
总共109名帕金森病患者。
用于评估收入、健康状况、健康相关费用和家庭活动的标准工具。
样本向帕金森病诊断后前5年内的个体倾斜。
人均社会总负担约为每年6000美元，其中最大的单一因素是65岁以下人群收入损失的补偿。政府保险覆盖了我们样本的85%。家庭负担的最大组成部分是提供非正式护理的负担和收入损失。提供非正式护理的配偶平均每周护理22小时。与老年人随机样本相比，我们的受访者花在房屋和庭院工作上的时间要少得多。
该疾病的直接成本仅占负担的一小部分。以工资损失、非正式护理和角色变化形式存在的隐性成本相当大。当我们考虑到家庭通常靠固定收入生活，且照顾者是老年配偶时，这些成本的规模就显得更为重要。如果医生全面地看待这种疾病的患者，将最有能力进行干预。在治疗症状时，医生需要意识到即使在早期阶段，与帕金森病相关的疼痛、疲劳和抑郁程度也很高。结果清楚地表明，家庭关系很早就受到影响，这表明早期转介到家庭健康、社会工作者/咨询以及帕金森病支持小组等服务的重要性。
