Fédération des hôpitaux de polyhandicap et multihandicap hôpital San Salvadour, Assistance publique-Hôpitaux de Paris, Paris, France; EA 3279, self-perceived health assessment research unit, school of medicine, Aix-Marseille université, 27, boulevard Jean-Moulin, 13385 Marseille cedex 05, France.
EA 3279, self-perceived health assessment research unit, school of medicine, Aix-Marseille université, 27, boulevard Jean-Moulin, 13385 Marseille cedex 05, France.
Rev Neurol (Paris). 2021 Jun;177(6):683-689. doi: 10.1016/j.neurol.2020.06.018. Epub 2020 Oct 14.
Providing a new tool, based on the point of view of experts in polyhandicap, which assesses the global severity of the health status of polyhandicapped persons is necessary. We present herein the initial validation of the polyhandicap severity scale (PSS).
The initial development of the tool was undertaken in two steps: item selection and validation process. The final set included 10 items related to abilities and 17 items related to comorbidities and impairments. The patient selection criteria were as follows: age>3 years, age at onset of cerebral lesion under 3 years old, with a combination of motor deficiency and profound intellectual impairment, associated with restricted mobility and everyday life dependence. External validity, reproducibility (20 patients), responsiveness (38 patients), and acceptability were explored.
During the 18-month study period, a total of 875 patients were included. Two scores were calculated: an abilities score and a comorbidities/impairments score (higher score, higher severity). The 2 scores were higher for: older patients, patients with a progressive etiology, patients with more devices and more medications, patients with higher dependency and lower mobility. Indicators of reproducibility and responsiveness were satisfactory. The mean time duration of fulfilling was 22minutes (standard deviation 5).
Quantifying the health severity of polyhandicapped persons is necessary for both healthcare workers and health decision makers. The polyhandicap severity scale provides the first reliable and valid measure of the health severity status for children and adults.
提供一种新的工具，基于多残疾专家的观点，评估多残疾者的整体健康严重程度是必要的。我们在此介绍多残疾严重程度量表（PSS）的初步验证结果。
该工具的初步开发分两步进行：项目选择和验证过程。最终确定了 10 项与能力相关的项目和 17 项与共病和损伤相关的项目。患者选择标准如下：年龄>3 岁，脑损伤发病年龄<3 岁，运动缺陷与严重智力障碍并存，伴有活动受限和日常生活依赖。探索了外部有效性、可重复性（20 例患者）、反应性（38 例患者）和可接受性。
在 18 个月的研究期间，共纳入了 875 例患者。计算了两个分数：一个是能力分数，另一个是共病/损伤分数（分数越高，严重程度越高）。年龄较大、病因进展性、使用更多设备和更多药物、依赖性更高、活动能力更低的患者，其 2 个分数均较高。可重复性和反应性的指标令人满意。完成评估的平均时间为 22 分钟（标准差为 5）。
量化多残疾者的健康严重程度对医疗保健工作者和卫生决策者都是必要的。多残疾严重程度量表为儿童和成人提供了健康严重程度状态的首个可靠和有效的衡量标准。
