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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. [1] The ASQoL is based on the needs-based quality of life model. [2] It is a self-administered questionnaire which contains 18 items [3] and takes up to four minutes to complete. [1]
Developed by Galen Research and published in 2003, [1] the ASQoL has been used in clinical studies worldwide. The content for the measure was drawn from qualitative interviews that were conducted with ankylosing spondylitis (AS) patients. The draft version of the ASQoL was created and then went through several stages of testing to ensure it had good face validity, content validity, reproducibility and construct validity. [1]
| | This section needs expansion. You can help by adding to it. (November 2013) |
The ASQoL was initially developed in UK English and Dutch, but to date a total of 37 language versions have been adapted. The language adaptations can be broken down into waves:
| Wave | Language Adaptation |
|---|---|
| First Wave | US English, Canadian French, Canadian English, French, German, Italian, Spanish and Swedish [4] |
| Second Wave | Argentinian Spanish, Belgian Flemish, Belgian French, US Spanish, Czech, Hungarian, Mexican Spanish, Turkish, Polish, New Zealand English and Brazilian Portuguese. [2] |
| Third Wave | Bulgarian, Chilean Spanish, Greek, Croatian, Danish, Finnish, Swedish for Finland, Hebrew, Korean, Norwegian, Peruvian Spanish, Philippine Tagalog, Russian, Slovakian, UAE Arabic, Traditional Chinese-Taiwan, Simplified Chinese-China. [2] |
Pharmaceutical companies began utilizing the ASQoL to test the effectiveness of newly developed TNF inhibitors, which aid in the treatment of ankylosing spondylitis. [5] [6] Abbott has utilized the ASQoL to evaluate the impact of adalimumab [7] [8] and other organizations like Wyeth and the Medical Research Council have used it to evaluate the effect of etanercept. [9] [10]
Since the development of the ASQoL, several studies have been performed in order to evaluate and validate the measure. These studies include:
Infliximab, a chimeric monoclonal antibody, sold under the brand name Remicade among others, is a medication used to treat a number of autoimmune diseases. This includes Crohn's disease, ulcerative colitis, rheumatoid arthritis, ankylosing spondylitis, psoriasis, psoriatic arthritis, and Behçet's disease. It is given by slow injection into a vein, typically at six- to eight-week intervals.
Ankylosing spondylitis (AS) is a type of arthritis characterized by long-term inflammation of the joints of the spine, typically where the spine joins the pelvis. Occasionally, areas affected may include other joints such as the shoulders or hips. Eye and bowel problems may occur as well as back pain. Joint mobility in the affected areas generally worsens over time.
Spondyloarthropathy or spondyloarthrosis refers to any joint disease of the vertebral column. As such, it is a class or category of diseases rather than a single, specific entity. It differs from spondylopathy, which is a disease of the vertebra itself, but many conditions involve both spondylopathy and spondyloarthropathy.
Etanercept, sold under the brand name Enbrel among others, is a biologic medical product that is used to treat autoimmune diseases by interfering with tumor necrosis factor (TNF), a soluble inflammatory cytokine, by acting as a TNF inhibitor. It has US Food and Drug Administration (FDA) approval to treat rheumatoid arthritis, juvenile idiopathic arthritis and psoriatic arthritis, plaque psoriasis and ankylosing spondylitis. Tumor necrosis factor alpha (TNFα) is the "master regulator" of the inflammatory (immune) response in many organ systems. Autoimmune diseases are caused by an overactive immune response. Etanercept has the potential to treat these diseases by inhibiting TNF-alpha.
Adalimumab, sold under the brand name Humira, among others, is a monoclonal antibody used to treat rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn's disease, ulcerative colitis, plaque psoriasis, hidradenitis suppurativa, uveitis, and juvenile idiopathic arthritis. It is administered by subcutaneous injection.
The BASDAI or Bath Ankylosing Spondylitis Disease Activity Index is a validated diagnostic test which allows a physician, usually a rheumatologist, to determine the effectiveness of a current drug therapy, or the need to institute a new drug therapy for the treatment of Ankylosing spondylitis (AS). The BASDAI is one of a group of classification criteria for spondyloarthropathies.
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.
Golimumab is a human monoclonal antibody which is used as an immunosuppressive medication and sold under the brand name Simponi. Golimumab targets tumor necrosis factor alpha (TNF-alpha), a pro-inflammatory molecule and hence is a TNF inhibitor. Profound reduction in C-reactive protein (CRP) levels, interleukin (IL)-6, intercellaular adhesion molecules (ICAM)-1, matrix metalloproteinase (MMP)-3, and vascular endothelial growth factor (VEGF) demonstrates golimumab as an effective modulator of inflammatory markers and bone metabolism.
Arthritis mutilans is a rare medical condition involving severe inflammation damaging the joints of the hands and feet, and resulting in deformation and problems with moving the affected areas; it can also affect the spine. As an uncommon arthropathy, arthritis mutilans was originally described as affecting the hands, feet, fingers, and/or toes, but can refer in general to severe derangement of any joint damaged by arthropathy. First described in modern medical literature by Marie and Leri in 1913, in the hands, arthritis mutilans is also known as opera glass hand, or chronic absorptive arthritis. Sometimes there is foot involvement in which toes shorten and on which painful calluses develop in a condition known as opera glass foot, or pied en lorgnette.
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.
Tofacitinib, sold under the brand Xeljanz among others, is a medication used to treat rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, polyarticular course juvenile idiopathic arthritis, and ulcerative colitis. It is a janus kinase (JAK) inhibitor, discovered and developed by the National Institutes of Health and Pfizer.
Sarilumab, sold under the brand name Kevzara, is a human monoclonal antibody medication against the interleukin-6 receptor. Regeneron Pharmaceuticals and Sanofi developed the drug for the treatment of rheumatoid arthritis (RA), for which it received US FDA approval on 22 May 2017 and European Medicines Agency approval on 23 June 2017.
The Rheumatoid Arthritis Quality of Life Questionnaire (RAQoL) is a disease-specific patient-reported outcome measure which determines the effect rheumatoid arthritis has on a patient’s quality of life. The RAQoL has 30 items with a yes and no response format and takes about six minutes to complete.
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 Psoriatic Arthritis Quality of Life (PsAQoL) measure is a disease specific patient-reported outcome measure which measures the effect that psoriatic arthritis has on a patient’s quality of life.
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 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.
The Quality of Well-Being Scale (QWB) is a general health quality of life questionnaire which measures overall status and well-being over the previous three days in four areas: physical activities, social activities, mobility, and symptom/problem complexes.
Axial spondyloarthritis is a chronic, autoinflammatory disease predominantly affecting the axial skeleton. The phrase itself is an umbrella term characterizing a diverse disease family united by shared clinical and genetic features, such as the involvement of the axial skeleton. The best-known member of the axial spondyloarthritis disease family is ankylosing spondylitis. The 2009 introduction of the expression axial spondyloarthritis made it possible to refer to (1) less severe forms of spondylitis, (2) the early phase of ankylosing spondylitis and (3) ankylosing spondylitis itself collectively.
