Muñoz Beatriz E, Quintana-Peña Valentina, Gonzalez Maria C, Valderrama Jaime A, Castaño-Pino Yor Jaggy, Rincón Domiciano, Navarro Andrés, Orozco Jorge L
Fundación Valle del Lili, Cali, Colombia.
Grupo de Investigación I2T, Cali, Colombia.
Parkinsons Dis. 2020 Jul 15;2020:2497386. doi: 10.1155/2020/2497386. eCollection 2020.
Parkinson's disease (PD) is one of the most prevalent age-related neurodegenerative disorders. The progression of PD produces an important disease burden in patients due to functional impairment, which also has repercussions on caregivers. In addition, it has become a challenge for health systems, especially in developing countries, which have limited resources. Multidisciplinary teams with a community approach have proved effective in high-income countries; however, there is no reported literature in low- and middle-income countries about this kind of initiative.
This paper aims to document the experience of patients, caregivers, and experts in a community approach as an innovative model in a middle-income country.
A quantitative descriptive research was conducted. The selection criteria were having a PD diagnosis, attending with a caregiver to Saturdays in Motion (SIM), or being a clinical expert invited to SIM. PD patients and their caregivers answered three surveys on their points of view with respect to SIM: SIM and their quality of life (QoL) and PDQ-39 and Zarit, whereas clinical experts completed two questions related to the SIM program. Descriptive statistics were used to summarize the results of the surveys and clinical tests.
Forty-eight, twenty-four, and twenty-one subjects answered surveys one, two, and three, respectively. In total, four clinical experts were interviewed. 87.9% of the patients consider that SIM activities improved their QoL. The most affected areas in PDQ-39 were those related to the social area. Around 66.6% of the caregivers reported a mild burden on Zarit and think that SIM enhances the PD patient's QoL. Clinical experts highlighted the sense of community and empathy.
Our preliminary experience shows a multidisciplinary model with a community approach which redefines the traditional relationship between patients, caregivers, and clinical experts. This aim of this initiative is that education and empowerment patients and caregivers reach a better perception of QoL.
帕金森病（PD）是最常见的与年龄相关的神经退行性疾病之一。由于功能障碍，PD的进展给患者带来了重大的疾病负担，这也对照顾者产生了影响。此外，它已成为卫生系统面临的一项挑战，尤其是在资源有限的发展中国家。在高收入国家，采用社区方法的多学科团队已被证明是有效的；然而，在低收入和中等收入国家，尚无关于此类举措的文献报道。
本文旨在记录患者、照顾者和专家在中等收入国家采用社区方法作为创新模式的经验。
进行了一项定量描述性研究。选择标准为患有PD诊断、与照顾者一起参加“周六行动”（SIM）或被邀请参加SIM的临床专家。PD患者及其照顾者就他们对SIM的看法回答了三项调查问卷：SIM及其生活质量（QoL）、PDQ-39和Zarit，而临床专家完成了与SIM项目相关的两个问题。描述性统计用于总结调查和临床测试的结果。
分别有48名、24名和21名受试者回答了调查问卷一、二和三。总共采访了四名临床专家。87.9%的患者认为SIM活动改善了他们的生活质量。PDQ-39中受影响最大的领域是与社交领域相关的领域。约66.6%的照顾者报告Zarit负担较轻，并认为SIM提高了PD患者的生活质量。临床专家强调了社区意识和同理心。
我们的初步经验表明，一种采用社区方法的多学科模式重新定义了患者、照顾者和临床专家之间的传统关系。该举措的目的是通过教育和赋权，使患者和照顾者对生活质量有更好的认知。
