About this Research Topic
Clinical disorders have an effect on a patient’s physical and, in many cases, mental health. Although these measures are very important to gauge the therapeutic effects of different treatments, many do not consider the overall impact on patient quality of life (QOL) and outcome. Evaluation of QOL measures has become an integral part of many disorders. Chronic disorders, or acute disorders with long lasting deficits, affect the QOL to the point that complete benefits of medical/surgical therapies cannot be actualized. A wide range of neuromuscular disorders especially influence QOL, and some of these have standardized QOL measures. The further development of effective QOL measures for different neuromuscular disorders would enhance care for patients. Furthermore, standardized, validated, disease specific QOL measures would also help clinicians to fully understand the effects of these disorders.
The aim of this Research Topic is the evaluation and recommendation of guidelines for QOL measures which are cross-cultural, and validated for specific neuromuscular disorders. We would also like to include measures which accurately indicate the impact on quality of life, as these are paramount in a patient’s care. These measures are very helpful in gauging the progression of the disorders and the efficacy of therapies. Incidence and prevalence of some neuromuscular disorders is low, but due to the chronic nature of the disorders they have high burden of disease on patients, families, and healthcare systems, and QOL measures can help better predict morbidity and mortality combined with other clinical data. Some of the QOL measures like Short-Form Health Survey SF-36 or the World Health Organization QOL short version (WHO-QOL BREF) can be useful but are not specific for neuromuscular disorders, and cannot give us results with a high level of certainty of effect on patients’ lives. Some QOL measures are already in use, such as MG QOL and QOL-gNMD, and are very helpful in assessing the effect on patients’ lives and health care system. We would therefore like to discuss recommendations on which measures should be used in clinical settings.
In this Research Topic we aim to document the validity of health-related quality of life questionnaires on the neuromuscular disorders listed below. Submitted manuscripts should include the sensitivity and specificity of the questionnaires for different neuromuscular disorders. If specific questionnaires are not available, recommendations of generic QOL measures and predictability of effect on patients’ overall health will also be considered. Manuscripts should briefly address the disorder, data on mortality and morbidity, and any QOL measures specifically being used. The ease of administration for clinicians and researchers should also be discussed. We welcome manuscripts relating to the following disorders:
• Amyotrophic Lateral Sclerosis
• Myasthenia Gravis
• Limb Girdle Muscular Dystrophies
• Diabetic Peripheral Neuropathies
• Lower Back Pain
• Spinal Muscular Atrophy
• Duchenne Muscular Dystrophy
Keywords: quality of life, neuropathic pain, ALS, myasthenia gravis, limb-girdle, SMA, health-related quality of life
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