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Psoriasis is a long-lasting, noncontagious autoimmune disease characterized by patches of abnormal skin. These areas are red, pink, or purple, dry, itchy, and scaly. Psoriasis varies in severity from small localized patches to complete body coverage. Injury to the skin can trigger psoriatic skin changes at that spot, which is known as the Koebner phenomenon.
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.
A depression rating scale is a psychometric instrument (tool), usually a questionnaire whose wording has been validated with experimental evidence, having descriptive words and phrases that indicate the severity of depression for a time period. When used, an observer may make judgements and rate a person at a specified scale level with respect to identified characteristics. Rather than being used to diagnose depression, a depression rating scale may be used to assign a score to a person's behaviour where that score may be used to determine whether that person should be evaluated more thoroughly for a depressive disorder diagnosis. Several rating scales are used for this purpose.
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.
Linguistic validation is the process of investigating the reliability, conceptual equivalence, and content validity of translations of patient-reported outcome (PRO) measures.
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 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 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 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.
The Pittsburgh Sleep Quality Index (PSQI) is a self-report questionnaire that assesses sleep quality over a 1-month time interval. The measure consists of 19 individual items, creating 7 components that produce one global score, and takes 5–10 minutes to complete. Developed by researchers at the University of Pittsburgh, the PSQI is intended to be a standardized sleep questionnaire for clinicians and researchers to use with ease and is used for multiple populations. The questionnaire has been used in many settings, including research and clinical activities, and has been used in the diagnosis of sleep disorders. Clinical studies have found the PSQI to be reliable and valid in the assessment of sleep problems to some degree, but more so with self-reported sleep problems and depression-related symptoms than actigraphic measures.
Calcipotriol/betamethasone dipropionate, sold under the brand name Taclonex among others, is a fixed-dose combination medication of the synthetic vitamin D3 analog calcipotriol (also known as calcipotriene) and the synthetic corticosteroid betamethasone dipropionate for the treatment of plaque psoriasis. It is used in the form of ointment, topical suspension, gel, aerosol, and foam.
The Dermatology life Quality Index (DLQI) is a ten-question questionnaire used to measure the impact of skin disease on the quality of life of an affected person. It is designed for people aged 16 years and above.
Functional Assessment of Cancer Therapy - General (FACT-G) is a patient-reported outcome measure used to assess health-related quality of life in patients undergoing cancer therapy. The FACT-G is the original questionnaire that led to the development of the larger Functional Assessment of Chronic Illness Therapy (FACIT) collection of quality of life instruments. The survey assesses the impacts of cancer therapy in four domains: physical, social/family, emotional, and functional. The FACT-G is also offered with additional questions measuring cancer-specific factors that may affect quality of life, leading to the creation of the Functional Assessment of Cancer Therapy - Head and Neck (FACT-H&N), the Functional Assessment of Cancer Therapy - Lung (FACT-L), and 18 others.
Donald L. Patrick is a social scientist, academic, and an author. He is a Professor Emeritus of Health Systems and Population Health at the University of Washington, Director of Seattle Quality of Life Group, and Creator of the Biobehavioral Cancer Prevention and Control Training Program jointly with the Fred Hutchinson Cancer Center. He has served as the co-chair of the Cochrane Collaboration's Patient Reported Outcomes Methods Group. His research interests revolve around various aspects of public health which integrate the themes from fields such as psychological intervention, social stratification, public health, and quality of life. Much of his research works have focused on outcomes research on vulnerable populations, health disparities, and end-of-life-care.
References
- ↑ Bronsard V, Paul C, Prey S, Puzenat E, Gourraud PA, Aractingi S, Aubin F, Bagot M, Cribier B, Joly P, Jullien D, Le Maitre M, Richard-Lallemand MA, Ortonne JP (Apr 2010). "What are the best outcome measures for assessing quality of life in plaque type psoriasis? A systematic review of the literature". Journal of the European Academy of Dermatology and Venereology. 24 (Suppl 2): 17–22. doi:10.1111/j.1468-3083.2009.03563.x. PMID 20443996.
- ↑ Bhosle, Monali J.; Kulkarni, Amit; Feldman, Steven R.; Balkrishnan, Rajesh (2006). "Quality of life in patients with psoriasis". Health and Quality of Life Outcomes. 4 (35): 35. doi: 10.1186/1477-7525-4-35 . PMC 1501000 . PMID 16756666.
- 1 2 McKenna, SP; Cook, SA; Whalley, D; Doward, LC; Richards, HL; Griffiths, CE; Van Assche, D (Aug 2003). "Development of the PSORIQoL, a psoriasis-specific measure of quality of life designed for use in clinical practice and trials". The British Journal of Dermatology. 149 (2): 323–31. doi:10.1046/j.1365-2133.2003.05492.x. PMID 12932239.
- ↑ "Psoriasis: management of psoriasis" (PDF). Nice.org.uk. National Institute for Health and Clinical Excellence. Archived from the original (PDF) on 13 November 2013. Retrieved 2 December 2013.
- ↑ "A double blind, randomized, placebo controlled, multicenter, dose finding study of oral AEB071 assessing Psoriasis Area and Severity Index (PASI) response as a function of dose and treatment duration (primary outcome) in patients with plaque psoriasis". EU Clinical Trials Register. European Medicines Agency. Retrieved 2 December 2013.
- ↑ Cozzani, E.; Borrini, V; Pennella, A; Burlando, M; Cardo, P; Rebora, A; Parodi, A. (Dec 2010). "The quality of life in Italian psoriatic patients treated with biological drugs". Giornale Italiano di Dermatologia e Venereologia. 145 (6): 709–712. PMID 21139547.