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Multiple sclerosis (MS) is an autoimmune disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. Being a demyelinating disease, MS disrupts the ability of parts of the nervous system to transmit signals, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. Symptoms include double vision, vision loss, eye pain, muscle weakness, and loss of sensation or coordination. MS takes several forms, with new symptoms either occurring in isolated attacks or building up over time. In relapsing forms of MS, between attacks, symptoms may disappear completely, although some permanent neurological problems often remain, especially as the disease advances. In progressive forms of MS, bodily function slowly deteriorates once symptoms manifest and will steadily worsen if left untreated.
Fatigue describes a state of tiredness, exhaustion or loss of energy.
Sulbutiamine (brand names Arcalion, Enerion) is a synthetic derivative of thiamine (vitamin B1). In France, it is used to treat symptoms of weakness or fatigue. It is also sold as a dietary supplement. Sulbutiamine was discovered in Japan as part of an effort to develop useful thiamine derivatives.
A patient-reported outcome (PRO) is a health outcome directly reported by the patient who experienced it. It stands in contrast to an outcome reported by someone else, such as a physician-reported outcome, a nurse-reported outcome, and so on. PRO methods, such as questionnaires, are used in clinical trials or other clinical settings, to help better understand a treatment's efficacy or effectiveness. The use of digitized PROs, or electronic patient-reported outcomes (ePROs), is on the rise in today's health research setting.
Multiple sclerosis (MS) is a chronic inflammatory demyelinating disease that affects the central nervous system (CNS). Several therapies for it exist, although there is no known cure.
The signs and symptoms of multiple sclerosis (MS) encompass a wide range of neurological and physical manifestations, including vision problems, muscle weakness, coordination difficulties, and cognitive impairment, varying significantly in severity and progression among individuals.
In general, quality of life is the perceived quality of an individual's daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual's life. In health care, health-related quality of life (HRQoL) is an assessment of how the individual's well-being may be affected over time by a disease, disability or disorder.
The Migraine Specific Quality of Life (MSQoL) is a patient-reported outcome measure which assesses the quality of life of migraineurs. It is a 25-item questionnaire which is filled out by the patient and is used to determine how the patient's life has been affected by their migraines.
The Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire is a patient-reported outcome (PRO) measure which assesses the quality of life of patients with ankylosing spondylitis. The ASQoL is based on the needs-based quality of life model. It is a self-administered questionnaire which contains 18 items and takes up to four minutes to complete.
The Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) is a disease specific patient-reported outcome measure which measures the effect growth hormone deficiency has on adult patients. The score of the QoL-AGHDA is used to determine the extent to which growth hormone deficiency has affected the patient’s quality of life, and what treatment can then be administered. A high score on the QoL-AGHDA indicates that the patient suffers from many symptoms and therefore has a lower quality of life.
The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) is a disease specific patient-reported outcome measure which assesses quality of life of patients with pulmonary hypertension (PH). It was the first pulmonary hypertension specific questionnaire for assessing patient reported symptoms, quality of life and functioning.
The Patient Reported Outcome Indices for Multiple Sclerosis (PRIMUS) is a disease specific patient-reported outcome questionnaire which measures the quality of life (QoL) of patients with multiple sclerosis.
The Asthma Life Impact Scale (ALIS) measure is a disease-specific patient reported outcome questionnaire which assesses the impact that asthma has on a patient’s quality of life.
The Nottingham Health Profile (NHP) is a general patient reported outcome measure which seeks to measure subjective health status.
The Quality of Life In Depression Scale (QLDS), originally proposed by Sonja Hunt and Stephen McKenna, is a disease specific patient-reported outcome which assesses the impact that depression has on a patient's quality of life. It is the most commonly used measure of quality of life in clinical trials and studies of depression. The QLDS was developed as a measure to be used in future clinical trials of anti-depressant therapy.
The Quality of Life Index for Atopic Dermatitis (QoLIAD) is a disease specific patient reported outcome which measures the impact that atopic dermatitis (AD) has on a given patient's quality of life.
The Psoriasis Index of Quality of Life (PSORIQoL) is a patient-reported outcome measure which determines the quality of life of patients with psoriasis. It is based on a needs-based approach to quality of life.
The Recurrent Genital Herpes Quality of Life (RGHQoL) measure is a patient-reported outcome measure which determines the impact that recurrent genital herpes has on a patient’s quality of life. It is a 20 item questionnaire with items such as “Herpes makes it difficult for me to plan ahead” and “I worry that sex will trigger an outbreak.”. Lower scores on the RGHQoL indicate a higher negative impact on quality of life.
George Jelinek is an Australian doctor who is professor and founder, Neuroepidemiology Unit, Melbourne School of Population and Global Health. This unit expressly evaluates modifiable risk factors that predict the progression of Multiple sclerosis. He has served since 2017 as the Chief Editor for Neuroepidemiology in the journal Frontiers in Neurology, and he was Founding Editor – and is currently the Editor Emeritus – for Emergency Medicine Australasia. Jelinek also has the distinction of being the first Professor of Emergency Medicine in Australasia. Between 1987 and 2018, he published more than 150 peer-reviewed papers, seven book forewords and eight books, and received more than 20 research grants. He is a frequent invited speaker.
References
- 1 2 3 4 Meads, DM; Doward, LC; McKenna, SP; Fisk, J; Twiss, J; Eckert, B (October 2009). "The development and validation of the Unidimensional Fatigue Impact Scale (U-FIS)". Multiple Sclerosis. 15 (10): 1228–38. doi:10.1177/1352458509106714. PMID 19556314. S2CID 23273125.
- ↑ Mathiowetz, V (Jul–Aug 2003). "Test-retest reliability and convergent validity of the Fatigue Impact Scale for persons with multiple sclerosis". The American Journal of Occupational Therapy. 57 (4): 389–95. doi: 10.5014/ajot.57.4.389 . PMID 12911080.
- ↑ Doward LC, Meads DM, Fisk J, Twiss J, Hagell P, Oprandi NC, Grand'Maison F, Bhan V, Arbizu T, Kohlmann T, Brassat D, Eckert BJ, McKenna SP (2010). "International Development of the Unidimensional Fatigue Impact Scale (U-FIS)". Value in Health. 13 (4): 463–8. doi: 10.1111/j.1524-4733.2010.00706.x . PMID 20230543.
- ↑ Elbers RG, Rietberg MB, van Wegen EE, Verhoef J, Kramer SF, Terwee CB, Kwakkel G (August 2012). "Self-report fatigue questionnaires in multiple sclerosis, Parkinson's disease and stroke: a systematic review of measurement properties". Quality of Life Research. 21 (6): 925–44. doi:10.1007/s11136-011-0009-2. PMC 3389599 . PMID 22012025.
- ↑ Valero, S; Sáez-Francàs, N; Calvo, N; Alegre, J; Casas, M (October 2013). "The role of neuroticism, perfectionism and depression in chronic fatigue syndrome. A structural equation modeling approach". Comprehensive Psychiatry. 54 (7): 1061–7. doi:10.1016/j.comppsych.2013.04.015. PMID 23759150.
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