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

被引:45
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
[21]   INTERNATIONAL SMA CONSORTIUM MEETING (26-28 JUNE 1992, BONN, GERMANY) [J].
MUNSAT, TL ;
DAVIES, KE .
NEUROMUSCULAR DISORDERS, 1992, 2 (5-6) :423-428
[22]   An expanded version of the Hammersmith Functional Motor Scale for SMA II and III patients [J].
O'Hagen, Jessica M. ;
Glanzman, Allan M. ;
McDermott, Michael P. ;
Ryan, Patricia A. ;
Flickinger, Jean ;
Quigley, Janet ;
Riley, Susan ;
Sanborn, Erica ;
Irvine, Carrie ;
Martens, William B. ;
Annis, Christine ;
Tawil, Rabi ;
Oskoui, Maryam ;
Darras, Basil T. ;
Finkel, Richard S. ;
De Vivo, Darryl C. .
NEUROMUSCULAR DISORDERS, 2007, 17 (9-10) :693-697
[23]   QUALITY OF LIFE AND PAIN IN PATIENTS WITH FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY [J].
Padua, Luca ;
Aprile, Irene ;
Frusciante, Roberto ;
Iannaccone, Elisabetta ;
Rossi, Monica ;
Renna, Rosaria ;
Messina, Sonia ;
Frasca, Giuseppina ;
Ricci, Enzo .
MUSCLE & NERVE, 2009, 40 (02) :200-205
[24]   Quality of life and well-being of patients with myasthenia gravis [J].
Paul, RH ;
Nash, JM ;
Cohen, RA ;
Gilchrist, JM ;
Goldstein, JM .
MUSCLE & NERVE, 2001, 24 (04) :512-516
[25]   A natural history study of late onset spinal muscular atrophy types 3b and 4 [J].
Piepers, S. ;
van den Berg, L. H. ;
Brugman, F. ;
Scheffer, H. ;
Ruiterkamp-Versteeg, M. ;
van Engelen, B. G. ;
Faber, C. G. ;
de Visser, M. ;
van der Pol, W. -L. ;
Wokke, J. H. J. .
JOURNAL OF NEUROLOGY, 2008, 255 (09) :1400-1404
[26]   Role of disease severity, illness perceptions, and mood on quality of life in muscle disease [J].
Rose, Michael R. ;
Sadjadi, Reza ;
Weinman, John ;
Akhtar, Tayyaba ;
Pandya, Shree ;
Kissel, John T. ;
Jackson, Carlayne E. .
MUSCLE & NERVE, 2012, 46 (03) :351-359
[27]   What determines quality of life in inclusion body myositis? [J].
Sadjadi, R. ;
Rose, M. R. .
JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 2010, 81 (10) :1164-1166
[28]   Response shift theory: Important implications for measuring quality of life in people with disability [J].
Schwartz, Carolyn E. ;
Andresen, Elena M. ;
Nosek, Margaret A. ;
Krahn, Gloria L. ;
Andresen, Elena ;
Campbell, Vincent ;
Cardinal, Brad ;
Drum, Charles ;
Fujiura, Glenn ;
Hall, Trevor ;
Hammond, Laura ;
Horner-Johnson, Willi ;
Krahn, Gloria ;
Nosek, Margaret .
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION, 2007, 88 (04) :529-536
[29]   A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects [J].
Spinhoven, P ;
Ormel, J ;
Sloekers, PPA ;
Kempen, GIJM ;
Speckens, AEM ;
VanHemert, AM .
PSYCHOLOGICAL MEDICINE, 1997, 27 (02) :363-370
[30]   Which chronic conditions are associated with better or poorer quality of life? [J].
Sprangers, MAG ;
de Regt, EB ;
Andries, F ;
van Agt, HME ;
Bijl, RV ;
de Boer, JB ;
Foets, M ;
Hoeymans, N ;
Jacobs, AE ;
Kempen, GIJM ;
Miedema, HS ;
Tijhuis, MAR ;
de Haes, HJM .
JOURNAL OF CLINICAL EPIDEMIOLOGY, 2000, 53 (09) :895-907