Patten Scott B, Williams Jeanne V A, Lavorato Dina H, Terriff David, Metz Luanne M, Berzins Sandy, Bulloch Andrew G M
Departments of Community Health Sciences (SBP, JVAW, DHL, SB, AGMB), Psychiatry (DT), and Clinical Neurosciences (LMM) and the Mental Health Centre for Research and Education, Hotchkiss Brain Institute (SBP, LMM, AGMB), University of Calgary, Calgary, Alberta, Canada.
Int J MS Care. 2012 Spring;14(1):2-8. doi: 10.7224/1537-2073-14.1.2.
Community-based studies are required to accurately describe the supportive services needed by people with multiple sclerosis (MS). Characteristics that influence (or result from) care-seeking may introduce bias into other types of studies. The Participation and Activity Limitation Survey (PALS) was a post-census survey conducted by Statistics Canada in association with a 2006 national census. The PALS collected data from a sample of 22,513 respondents having health-related impairments according to their census forms. The survey collected self-reported diagnostic data and obtained ratings for items assessing impairment as well as perceived met and unmet needs for care and support. It identified 245 individuals with MS, leading to an estimated (weighted) population prevalence of 0.2% (200 per 100,000). As expected, those with MS reported more-severe health problems than did those with other types of disability, particularly in the areas of mobility, dexterity, and cognition; they were also more likely to report having multiple caregivers. People with MS also reported more unmet health-care needs than did those with other forms of disability, particularly with respect to meal preparation, housework, shopping, and chores. Despite their more negative health status and greater reliance on caregivers, people with MS reported participation in society comparable to that of people without MS. Thus, people with MS report greater needs than do people with other forms of health-related disability and utilize supportive services more often. However, they also report higher levels of unmet needs. The substantial needs of people with MS are only partially addressed by existing services.
需要进行基于社区的研究,以准确描述多发性硬化症(MS)患者所需的支持性服务。影响(或源于)寻求护理的特征可能会给其他类型的研究带来偏差。参与和活动受限调查(PALS)是加拿大统计局与2006年全国人口普查联合开展的一次普查后调查。PALS从22513名根据普查表格有健康相关损伤的受访者样本中收集数据。该调查收集了自我报告的诊断数据,并获得了评估损伤以及感知到的已满足和未满足的护理及支持需求项目的评分。它识别出245名MS患者,导致估计(加权)的人群患病率为0.2%(每十万人口中有200人)。正如预期的那样,MS患者报告的健康问题比其他类型残疾患者更严重,尤其是在行动能力、灵活性和认知方面;他们也更有可能报告有多名护理人员。MS患者报告的未满足的医疗保健需求也比其他形式残疾的患者更多,特别是在准备膳食、家务、购物和杂务方面。尽管MS患者的健康状况更差且对护理人员的依赖更大,但他们报告的社会参与程度与非MS患者相当。因此,MS患者报告的需求比其他形式的与健康相关残疾的患者更大,并且更频繁地使用支持性服务。然而,他们报告的未满足需求水平也更高。现有服务仅部分满足了MS患者的大量需求。