Quality of life and measures of quality of life in patients with neuromuscular disorders

被引：83
作者：
Burns, Ted M. [1 ]
Graham, Christopher D. [2 ]
Rose, Michael R. [3 ]
Simmons, Zachary [4 ]
机构：
[1] Univ Virginia, Dept Neurol, Charlottesville, VA 22908 USA
[2] Kings Coll London, Guys Hosp, Inst Psychiat, Dept Psychol, London WC2R 2LS, England
[3] Kings Coll Hosp London, Dept Neurol, London, England
[4] Penn State Coll Med, Dept Neurol, Hershey, PA USA
来源：
MUSCLE & NERVE | 2012年 / 46卷 / 01期
关键词：
health-related QOL; neuromuscular disorders; HRQOL; QOL; quality of life; response shift; AMYOTROPHIC-LATERAL-SCLEROSIS; MYOTONIC-DYSTROPHY TYPE-1; SICKNESS IMPACT PROFILE; ASSESSMENT QUESTIONNAIRE; MUSCULAR-DYSTROPHY; MYASTHENIA-GRAVIS; PHYSICAL FUNCTION; ITALIAN VALIDATION; OUTCOME MEASURES; CONTROLLED TRIAL;
D O I：
10.1002/mus.23245
中图分类号：
R74 [神经病学与精神病学];
学科分类号：
摘要：
In this review we present an overview of quality of life (QOL) and QOL measures in neuromuscular disorders. We discuss the characteristics of QOL measures used in neuromuscular research, highlighting differences between generic versus disease-specific and global versus health-related QOL instruments. The phenomenon of response shift is reviewed. Commonly used QOL instruments are reviewed for amyotrophic lateral sclerosis, muscle diseases, myasthenia gravis, and polyneuropathy. We also review some of what is known about QOL for patients with these neuromuscular disorders. Muscle Nerve 46: 925, 2012
引用
收藏
页码：9 / 25
页数：17
相关论文
共 161 条
  • [1] Quality of life: Who can make the judgment?
    Abramson, N
    [J]. AMERICAN JOURNAL OF MEDICINE, 1996, 100 (03) : 365 - 366
  • [2] Abresch R T, 1998, Phys Med Rehabil Clin N Am, V9, P233
  • [3] Abresch Richard T, 2002, Am J Hosp Palliat Care, V19, P39, DOI 10.1177/104990910201900109
  • [4] Ahlstrom G, 1996, SCAND J REHABIL MED, V28, P147
  • [5] [Anonymous], AMYOTROPH LATERAL SC
  • [6] [Anonymous], INDIVIDUAL QUALITY L
  • [7] [Anonymous], 1995, WHO TECHN REP SER
  • [8] Health-related quality of life in myotonic dystrophy type 1 and its relationship with cognitive and emotional functioning
    Antonini, G
    Soscia, F
    Giubilei, F
    De Carolis, A
    Gragnani, F
    Morino, S
    Ruberto, A
    Tatarelli, R
    [J]. JOURNAL OF REHABILITATION MEDICINE, 2006, 38 (03) : 181 - 185
  • [9] Arnold Angela, 2005, J Genet Couns, V14, P307, DOI 10.1007/s10508-005-0006-z
  • [10] ETHICAL CONSIDERATIONS IN THE MANAGEMENT OF INDIVIDUALS WITH SEVERE NEUROMUSCULAR DISORDERS
    BACH, JR
    BARNETT, V
    [J]. AMERICAN JOURNAL OF PHYSICAL MEDICINE & REHABILITATION, 1994, 73 (02) : 134 - 140
12345678910