Futurum Health Care Academy, Jönköping ; Institution of Neurobiology, Care Sciences and Society, Karolinska Institutet, Karolinska University Hospital Huddinge, Stockholm.
J Multidiscip Healthc. 2013 Jul 3;6:239-47. doi: 10.2147/JMDH.S44451. Print 2013.
The purpose of this study was to draw conclusions from patient-reported experiences in two national surveys from Scandinavia with the intention of comparing treatment strategies and increasing our knowledge of factors that affect the experiences of patients with Parkinson's disease (PD).
A total of 2000 individuals in Sweden and 1300 in Norway were invited to complete postal surveys covering PD-related issues. Patient experiences of diagnostic procedures, symptom control, and follow-up in PD and the effects on symptom-related quality of life were collected. Pharmaceutical prescription data on anti-PD drugs and administrative data were collected from national registries.
The surveys were completed by 1553 (78%) of the Swedish cohort and 1244 (96%) of the Norwegian cohort. Only small differences were seen in disease duration and age distribution. Statistically as well as clinically significant differences in symptom control, diagnostic, and follow-up procedures, as well as in pharmacological treatment and impact on quality of life, were found between the national cohorts independent of disease duration.
Information from separate national surveys has the potential to increase our knowledge of patient experiences in PD and can be used to compare, evaluate, educate, and guide health care staff and administrators in optimizing health care for patients with the disease.
本研究旨在从来自斯堪的纳维亚的两项全国性调查中的患者报告的经验中得出结论，旨在比较治疗策略并增加我们对影响帕金森病（PD）患者体验的因素的了解。
邀请瑞典的 2000 人和挪威的 1300 人完成涵盖 PD 相关问题的邮寄调查。收集了患者对 PD 诊断程序、症状控制和随访的体验，以及对症状相关生活质量的影响。从国家登记处收集了抗 PD 药物的药物处方数据和行政数据。
瑞典队列中有 1553 人（78%）和挪威队列中有 1244 人（96%）完成了调查。仅在疾病持续时间和年龄分布方面存在微小差异。独立于疾病持续时间，在症状控制、诊断和随访程序方面，以及在药物治疗和对生活质量的影响方面，国家队列之间存在统计学和临床上显著的差异。
来自单独的全国性调查的信息有可能增加我们对 PD 患者体验的了解，并可用于比较、评估、教育和指导医护人员和管理人员，以优化患者的医疗保健。
