Quality-of-life in Charcot-Marie-Tooth disease: the patient's perspective.
Quality-of-life in Charcot-Marie-Tooth disease: the patient's perspective.
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DOI：
10.1016/j.nmd.2014.06.433
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发表时间：
2014-11
影响因子：
2.8
通讯作者：
Herrmann, David N.
中科院分区：
文献类型：
--
作者：
Johnson, Nicholas E.;Heatwole, Chad R.;Dilek, Nuran;Sowden, Janet;Kirk, Callyn A.;Shereff, Denise;Shy, Michael E.;Herrmann, David N.
这项研究确定了与夏科-玛丽-图斯病相关的症状对生活质量的影响。对遗传性神经病协会罕见病临床研究网络联系登记处的夏科-玛丽-牙病患者进行了调查。这项调查询问了214个症状和20个主题，这些症状和主题以前通过患者访谈被确定为对Charcot-Marie-Tooth患者重要。症状人口影响的计算方法是患病率乘以确定的每个症状的相对重要性。根据年龄、症状持续时间、性别、Charcot-Marie-Tooth类型和就业状况分析患病率和症状影响。407名受访者认为脚踝无力(99.7%)和平衡受损(98.6%)是最普遍的主题。足部和脚踝无力以及活动受限是影响最大的主题。随着年龄的增长和症状持续时间的延长，症状的患病率和影响逐渐增加。患有Charcot-Marie-Tooth的女性中有几个更常见的主题，包括活动受限、疼痛、疲劳、臀部大腿无力和胃肠道问题。除情感或身体形象问题外，所有这些主题在失业者中都更为普遍。在Charcot-Marie-Tooth类型之间，症状发生率差异很小。有多种症状会影响成年人的Charcot-Marie-Tooth生活质量。这些症状具有不同程度的重要性，很容易被患者识别，并代表了Charcot-Marie-Tooth健康的关键领域。
This study determines the impact of symptoms associated with Charcot-Marie-Tooth disease on quality-of-life. Charcot-Marie-Tooth patients in the Inherited Neuropathies Consortium Rare Diseases Clinical Research Network Contact Registry were surveyed. The survey inquired about 214 symptoms and 20 themes previously identified as important to Charcot-Marie-Tooth patients through patient interviews. Symptom population impact was calculated as the prevalence multiplied by the relative importance of each symptom identified. Prevalence and symptom impact were analyzed by age, symptom duration, gender, Charcot-Marie-Tooth type, and employment status. 407 respondents identified foot and ankle weakness (99.7%) and impaired balance (98.6%) as the most prevalent themes. Foot and ankle weakness and limitations with mobility were the themes with the highest impact. Both symptom prevalence and impact gradually increased with age and symptom duration. Several themes were more prevalent in women with Charcot-Marie-Tooth, including activity limitations, pain, fatigue, hip-thigh weakness, and gastrointestinal issues. All of the themes, except emotional or body image issues, were more prevalent among unemployed individuals. There were minimal differences in symptom prevalence between Charcot-Marie-Tooth types. There are multiple symptoms that impact Charcot-Marie-Tooth quality-of-life in adults. These symptoms have different levels of importance, are readily recognized by patients, and represent critical areas of Charcot-Marie-Tooth health.
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患者鉴定1A型charcot-marie-tooth病的症状影响。
影响因子：
--
作者：
Johnson NE;Heatwole CR;Ferguson M;Sowden JE;Jeanat S;Herrmann DN
通讯作者：
Herrmann DN
影响因子：
9.9
作者：
Heatwole, Chad;Bode, Rita;Moxley, Richard, III
通讯作者：
Moxley, Richard, III
影响因子：
2.8
作者：
Redmond, Anthony C.;Burns, Joshua;Ouvrier, Robert A.
通讯作者：
Ouvrier, Robert A.
影响因子：
4.5
作者：
Patrick, Donald L.;Burke, Laurie B.;Kennedy, Dianne L.
通讯作者：
Kennedy, Dianne L.
影响因子：
6
作者：
Boentert, Matthias;Dziewas, Rainer;Young, Peter
通讯作者：
Young, Peter