A systematic review of quality of life in adults with muscle disease

Abstract

We reviewed the literature on how muscle disease affects quality of life compared to healthy controls, and the factors that influence the effects of muscle disease on quality of life. We also wanted to know whether quality of life differed between muscle diseases. We searched online databases and identified 26 relevant studies. The quality of each study was assessed, results sections analysed and a database of factors associated with quality of life developed. We graded the level of evidence supporting the association between each factor and quality of life as inconclusive, moderate or high. Compared to controls, muscle disease compromised quality of life in all areas of functioning. There was little evidence to suggest that quality of life differed significantly between muscle diseases. There was a high level of evidence suggesting that disease severity, pain, fatigue, and mood significantly affect quality of life. There was a moderate level of evidence suggesting that illness perceptions, coping strategies, age and gender affect quality of life. Several factors had an inconsistent level of evidence.

Clinical, Psychosocial, and Central Correlates of Quality of Life in Myotonic Dystrophy Type 1 Patients

“…However, DM1 patients did not differ from the reference population with regard to the MCS, in accordance with previous findings [31]. In their systematic review of QoL in muscle diseases, Graham et al [32] emphasized that the mental domains of QoL measures are not as consistently affected by having muscle diseases than physical domains. The counterintuitive preservation of high scores on mental or psychosocial indices in chronic illness has been explained by the fact that patients' limitations in activities of daily living develop over a long period of time.…”

“…The factors with the greatest empirical support to date that may affect QoL in populations affected by muscle diseases include disease severity, mood, pain, and fatigue [32]. In the present study, these factors were identified as significant correlates of reduced QoL except for pain.…”

“…In this regard, Koch [35] advanced that QoL measurements are much too simplistic and fail to consider such attributes as interpersonal, marital, occupational, and social attributes in an ecologically valid way. The more ephemeral nature of psychological/emotional functioning has also been mentioned to explain the poor relationship between disease severity and psychosocial status [32]. In addition, the time frame (reference period) of 4 weeks used to assess change in perceived health with regard to SF-36 mental subscales is generally shorter than the one used for SF-36 physical subscales.…”

Prevalence of Muscular Dystrophies: A Systematic Literature Review

“…The impact for the affected person and their families can be devastating, particularly because muscular dystrophy can be of early onset [5,6]. Consequently, it remains important to have accurate prevalence rates to ensure that people affected by muscular dystrophies receive the support they need.…”

“…In myotonic dystrophy not only are muscle weakness and myotonia clinical features, but nearly every system including the endocrine system is affected [4]. Across the muscular dystrophies, symptoms commonly lead to difficulties with physical activity including walking and functioning in every-day life, reducing quality of life and placing a high strain on both the individuals and their families [5,6]. …”