Correlates of health related quality of life in adult patients with spinal muscular atrophy

被引:42
作者
Kruitwagen-Van Reenen, Esther Th [1 ,2 ,3 ]
Wadman, Renske I. [4 ]
Visser-Meily, Johanna Ma [1 ,2 ,3 ]
van den Berg, Leonard H. [4 ]
Schroder, Carin [1 ,2 ,3 ]
van der Pol, W. Ludo [1 ,2 ,3 ]
机构
[1] Univ Med Ctr Utrecht, Dept Rehabil, Brain Ctr Rudolf Magnus, Postbus 85500, NL-3508 GA Utrecht, Netherlands
[2] Univ Med Ctr Utrecht, Dept Nursing Sci, Brain Ctr Rudolf Magnus, Postbus 85500, NL-3508 GA Utrecht, Netherlands
[3] Univ Med Ctr Utrecht, Dept Sports, Brain Ctr Rudolf Magnus, Postbus 85500, NL-3508 GA Utrecht, Netherlands
[4] Univ Med Ctr Utrecht, Brain Ctr Rudolf Magnus, Dept Neurol & Neurosurg, Utrecht, Netherlands
关键词
adults; neuromuscular diseases; perceived health; quality of life; SMA; SF-36; NATURAL-HISTORY; MUSCLE DISEASE; ILLNESS PERCEPTIONS; DEPRESSION SCALE; HOSPITAL ANXIETY; RESPONSE SHIFT; DISABILITY; DYSTROPHY; MOOD; VALIDATION;
D O I
10.1002/mus.25148
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Introduction: To improve care for patients with spinal muscular atrophy (SMA), we assessed the physical and mental quality of life (QoL) in 62 adult patients with SMA. Methods: Physical component scores (PCS) and mental component scores (MCS) of the Short Form-36 Health Survey (SF-36) were obtained. Correlations with demographics, disease severity, and emotional distress were assessed. We used hierarchical multiple regression analysis to identify determinants of QoL. Results: PCS scores were lower, and MCS scores higher than in the healthy reference population. Patients with milder SMA types reported lower scores on several MCS domains. Motor skills scores and emotional distress explained 16% of the variance in PCS. SMA type and emotional distress explained 10% and 45% of the variance of MCS, respectively. Conclusions: Patients with milder forms of SMA tend to have a reduced mental QoL. Psychological interventions to reduce emotional distress may improve both mental and physical QoL. Muscle Nerve54: 850-855, 2016
引用
收藏
页码:850 / 855
页数:6
相关论文
共 38 条
[1]   Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations [J].
Aaronson, NK ;
Muller, M ;
Cohen, PDA ;
Essink-Bot, ML ;
Fekkes, M ;
Sanderman, R ;
Sprangers, MAG ;
Velde, AT ;
Verrips, E .
JOURNAL OF CLINICAL EPIDEMIOLOGY, 1998, 51 (11) :1055-1068
[2]   The disability paradox: high quality of life against all odds [J].
Albrecht, GL ;
Devlieger, PJ .
SOCIAL SCIENCE & MEDICINE, 1999, 48 (08) :977-988
[3]   Health-related quality of life outcomes measures [J].
Andresen, EM ;
Meyers, AR .
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION, 2000, 81 (12) :S30-S45
[4]   Vocational perspectives and neuromuscular disorders [J].
Andries, F ;
Wevers, CWJ ;
Wintzen, AR ;
Busch, HFM ;
Howeler, CJ ;
deJager, AEJ ;
Padberg, GW ;
deVisser, M ;
Wokke, JHJ .
INTERNATIONAL JOURNAL OF REHABILITATION RESEARCH, 1997, 20 (03) :255-273
[5]   Spinal muscular atrophy type 1 quality of life [J].
Bach, JR ;
Vega, J ;
Majors, J ;
Friedman, A .
AMERICAN JOURNAL OF PHYSICAL MEDICINE & REHABILITATION, 2003, 82 (02) :137-142
[6]   Normative data for the HADS from a large non-clinical sample [J].
Crawford, JR ;
Henry, JD ;
Crombie, C ;
Taylor, EP .
BRITISH JOURNAL OF CLINICAL PSYCHOLOGY, 2001, 40 :429-434
[7]  
desOliveira CM, 2011, EUR J PAEDIATR NEURO, V15, P36
[8]   Natural history of SMA IIIb - Muscle strength decreases in a predictable sequence and magnitude [J].
Deymeer, Feza ;
Serdaroglu, Piraye ;
Parman, Yesim ;
Poda, Mehves .
NEUROLOGY, 2008, 71 (09) :644-649
[9]  
Field A., 2013, Discovering Statistics Using IBM SPSS Statistics, V4th, P591
[10]   THE POTENTIAL OF PSYCHOLOGICAL INTERVENTIONS TO IMPROVE QUALITY OF LIFE AND MOOD IN MUSCLE DISORDERS [J].
Graham, Christopher D. ;
Simmons, Zachary ;
Stuart, Simon R. ;
Rose, Michael R. .
MUSCLE & NERVE, 2015, 52 (01) :131-136