Many have proposed that Acceptance and Commitment Therapy (ACT) may be particularly effective for improving outcomes in chronic disease/long-term conditions, and ACT techniques are now being used clinically. However, reviews of ACT in this context are lacking, and the state of evidence is unclear. This systematic review aimed to: collate all ACT interventions with chronic disease/long-term conditions, evaluate their quality, and comment on efficacy. Ovid MEDLINE, EMBASE and Psych Info were searched. Studies with solely mental health or chronic pain populations were excluded. Study quality was then rated, with a proportion re-rated by a second researcher. Eighteen studies were included: eight were randomised controlled trials (RCTs), four used pre-post designs, and six were case studies. A broad range of applications were observed (e.g. improving quality of life and symptom control, reducing distress) across many diseases/conditions (e.g. HIV, cancer, epilepsy).However, study quality was generally low, and many interventions were of low intensity. The small number of RCTs per application and lower study quality emphasise that ACT is not yet a well-established intervention for chronic disease/long-term conditions. However, there was some promising data supporting certain applications: parenting of children with long-term conditions, seizure-control in epilepsy, psychological flexibility, and possibly disease selfmanagement.
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.
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.
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