Barnes Michael, Kocer Serdar, Murie Fernandez Manuel, Balcaitiene Jovita, Fheodoroff Klemens
a Christchurch Group , N Shields , Tyne and Wear , UK.
b Centre de Rééducation de l'Hôpital du Jura , Porrentruy , Switzerland.
Disabil Rehabil. 2017 Jul;39(14):1428-1434. doi: 10.1080/09638288.2016.1198432. Epub 2016 Jul 6.
To better understand patient perspectives on the life impact of spasticity.
Global Internet survey (April 2014-May 2015) of 281 people living with spasticity.
Respondents indicated that spasticity has a broad impact on their daily-life: 72% reported impact on quality of life, 44% reported loss of independence and 44% reported depression. Most respondents (64%) were cared for by family members, of whom half had stopped working or reduced their hours. Overall, 45% reported dissatisfaction with the information provided at diagnosis; main reasons were "not enough information" (67%) and "technical terminology" (36%). Respondents had high treatment expectations; 63% expected to be free of muscle spasm, 41% to take care of themselves and 36% to return to a normal routine. However, 33% of respondents had not discussed these expectations with their physician. The most common treatments were physiotherapy (75%), botulinum neurotoxin (BoNT, 73%) and oral spasmolytics (57%). Of those treated with BoNT, 47% waited >1 year from spasticity onset to treatment.
This survey emphasises the broad impact of spasticity and highlights unmet needs in the patient journey. Improvements with regards to communication and the therapeutic relationship would be especially welcomed by patients, and would help manage treatment expectations. Implications of Rehabilitation Spasticity has broad impact on the lives of patients and their families that extends beyond the direct physical disability. Patients with spasticity need to be well informed about their condition and treatments available and should be given the opportunity to discuss their expectations. Physicians need to be aware of the patient's individual needs and expectations in order to better help them achieve their therapeutic goals.
更好地了解患者对痉挛对生活影响的看法。
2014年4月至2015年5月对281名痉挛患者进行全球互联网调查。
受访者表示痉挛对他们的日常生活有广泛影响：72%的人报告对生活质量有影响，44%的人报告失去独立性，44%的人报告有抑郁情绪。大多数受访者（64%）由家庭成员照顾，其中一半人停止工作或减少了工作时间。总体而言，45%的人报告对诊断时提供的信息不满意；主要原因是“信息不足”（67%）和“专业术语”（36%）。受访者对治疗期望很高；63%的人期望摆脱肌肉痉挛，41%的人期望能够自理，36%的人期望恢复正常生活。然而，33%的受访者尚未与医生讨论这些期望。最常见的治疗方法是物理治疗（75%）、肉毒杆菌神经毒素（BoNT，73%）和口服解痉药（57%）。在接受BoNT治疗的患者中，47%的人从痉挛发作到接受治疗等待了1年以上。
本次调查强调了痉挛的广泛影响，并突出了患者就医过程中未得到满足的需求。患者尤其欢迎在沟通和治疗关系方面有所改善，这将有助于管理治疗期望。康复的意义痉挛对患者及其家庭生活的广泛影响超出了直接的身体残疾。痉挛患者需要充分了解自己的病情和可用治疗方法，并应有机会讨论他们的期望。医生需要了解患者的个人需求和期望，以便更好地帮助他们实现治疗目标。
