List of patient-reported quality of life surveys

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This page lists patient-reported quality of life surveys used in the field of medicine, pharmaceuticals, and other scientific trials. These surveys are patient-reported outcome measures, may be questionnaires or surveys, and may be used to evaluate patient satisfaction, symptoms, disease state, or psychological well-being.

List

  1. The Adult Asthma Quality of Life Questionnaire (AQLQ) was developed at McMaster University in Ontario, Canada and was published in 1992. [15] It has since been used as a comparison tool [16] as well as a tool in clinical trials. [17] [18]
  2. The Asthma Life Impact Scale (ALIS) measure was developed in 2010 by Galen Research. [19] It has been translated into 16 languages. [20]
  1. The Parents' Index of Quality of Life in Atopic Dermatitis (PiQOL-AD) measures the impact that atopic dermatitis has on quality of life, from the parents' perspective. [21] It has 28 items and was developed simultaneously in the United Kingdom, The Netherlands, Germany, Italy, Spain, France and the United States. [22] It has been utilised in several research studies investigating the treatment of paediatric atopic dermatitis with pimecrolimus. [23] [24] [25] and also in a research study regarding health-related quality of life measurement in children in Ibero-American countries. [26]
  2. The Quality of Life Index for Atopic Dermatitis (QoLIAD) measures the impact that atopic dermatitis has on a given patient's quality of life. [27] It is a 25 item questionnaire for patients over the age of 16. [28] The QoLIAD has also been utilized in studies looking into educational intervention, [29] [30] topical corticosteroids [31] and pimecrolimus. [32]
  1. The Assessment of Quality of Life scales (AQoL) were psychometrically developed and refined over the past 30 years and are reliable and well-validated. [63] There are 4 instruments available; the AQoL-8D is the most comprehensive as it assesses HR-QoL across 8 domains - independent living, happiness, mental health, coping, relationships, self worth, pain, senses [64] (https://www.aqol.com.au).
  2. The Quality of Well-Being Scale (QWB) was developed in the 1970s, and a self-administered version called the QWB-SA was published in 1996. [65] The QWB has been used in studies investigating HIV patients [66] [67] and musculoskeletal disease, [68] amongst others.
  3. The EQ-5D is a generalised health-related quality of life measure which was developed in 1991 by the EuroQol Group. [69] It has five standard dimensions and has been translated into over 60 languages. [70] The EuroQoL has been extensively used in clinical trials, investigating a range of topics including overactive bladder, [71] attention deficit hyperactivity disorder [72] and denosumab for osteoporosis. [73]
  4. The Nottingham Health Profile (NHP) is a general patient-reported outcome designed to measure a patient's view of their own health status, in a number of areas. [74] It can be completed in 5 minutes. [75] It was developed in 1975 and current copyright belongs to Galen Research. [76] Clinical research studies where the NHP has been utilized include investigations into erythropoiesis-stimulating agents, [77] glucocorticoid replacement therapy [78] and transcutaneous electrical nerve stimulation for tinnitus. [79]
  5. The Short Form 36 (SF-36) Health Survey is a survey of general health developed by the RAND corporation. [80] It was designed for use in clinical practice, research, health policy evaluations and population surveys. [81] It has been used in numerous studies including ones investigating giardia intestinalis, [82] breast cancer survivors [83] and Parkinson's disease. [84]
  6. The Sickness Impact Profile (SIP) was developed in 1997 by the Johns Hopkins University. [85] It consists of 136 items and has been adapted for strokes, [86] and ex-ICU patients. [87]
  7. The Health Utilities Index measures health status, health-related quality of life and produces utility scores. [88] It was developed by Health Utilities Inc. in Canada. [89] It has been used in clinical studies investigating knee osteoarthritis, [90] urinary incontinence [91] and children who have been admitted to intensive care. [92]
  1. The Herpes Outbreak Impact Questionnaire (HOIQ) is designed to determine the impact of recurrent genital herpes outbreaks on a patient's life. [93] Its efficacy has been tested in an Australian clinical trial. [94]
  2. The Herpes Symptom Checklist (HSC) was developed alongside the HOIQ in order to assess daily symptoms of genital herpes outbreaks. [95] It was also used in an Australian clinical trial which tested the effectiveness of famciclovir. [96]
  3. The Recurrent genital herpes quality of life measure (RGHQoL) was developed in 1998 by Galen Research in order to assess the impact recurrent genital herpes has on quality of life. [97] It has been used in clinical trials investigating famciclovir, [98] suppressive antiviral therapy [99] and patient perspectives and quality of life. [100] [101]

Related Research Articles

A pain scale measures a patient's pain intensity or other features. Pain scales are a common communication tool in medical contexts, and are used in a variety of medical settings. Pain scales are a necessity to assist with better assessment of pain and patient screening. Pain measurements help determine the severity, type, and duration of the pain, and are used to make an accurate diagnosis, determine a treatment plan, and evaluate the effectiveness of treatment. Accurately measuring pain is a necessity in medical settings, especially if the pain measurement is going to be used as a screening tool, either for potential diseases or medical problems, or as a type of triage to determine urgency of one patient over another. Pain scales are based on trust, cartoons (behavioral), or imaginary data, and are available for neonates, infants, children, adolescents, adults, seniors, and persons whose communication is impaired. Pain assessments are often regarded as "the 5th vital sign".

The Crohn's Disease Activity Index or CDAI is a research tool used to quantify the symptoms of patients with Crohn's disease. This is of useful importance in research studies done on medications used to treat Crohn's disease; most major studies on newer medications use the CDAI in order to define response or remission of disease. As Crohn's disease is a disease with a variety of symptoms that affect quality of life, the quantification of symptoms may be of secondary importance to a quantitative assessment of the effect on quality of life. This has been addressed by the Inflammatory Bowel Disease Questionnaire (IBDQ) and other indices of quality of life for patients with Crohn's disease.

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.

<span class="mw-page-title-main">Quality of life (healthcare)</span> Notion in healthcare

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 minimal important difference (MID) or minimal clinically important difference (MCID) is the smallest change in a treatment outcome that an individual patient would identify as important and which would indicate a change in the patient's management.

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 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 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 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 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.

The Unidimensional Fatigue Impact Scale (U-FIS) is a disease-specific patient-reported outcome measure which measures the impact of multiple sclerosis related fatigue. It is a 22-item unidimensional scale which is based on needs-based quality of life theory.

Patient satisfaction is a measure of the extent to which a patient is content with the health care which they received from their health care provider.

References

  1. ↑ "ACQLI" (PDF). Galen-Research.com. Galen Research. Retrieved 11 November 2013.
  2. ↑ Clinical trial number NCT00428090 for "Rosiglitazone (Extended Release Tablets) As Monotherapy In Subjects With Mild To Moderate Alzheimer's Disease" at ClinicalTrials.gov
  3. ↑ Clinical trial number NCT00348309 for "Rosiglitazone (Extended Release Tablets) As Adjunctive Therapy For Subjects With Mild To Moderate Alzheimer's Disease (REFLECT-2)" at ClinicalTrials.gov
  4. ↑ Clinical trial number NCT00348140 for "Rosiglitazone (Extended Release Tablets) As Adjunctive Therapy In Subjects With Mild To Moderate Alzheimer's Disease (REFLECT-3)" at ClinicalTrials.gov
  5. ↑ Levy K, Lanctôt KL, Farber SB, Li A, Herrmann N (March 2012). "Does pharmacological treatment of neuropsychiatric symptoms in Alzheimer's disease relieve caregiver burden?". Drugs & Aging. 29 (3): 167–179. doi:10.2165/11599140-000000000-00000. PMID   22350526. S2CID   207301505.
  6. ↑ Spertus JA, Winder JA, Dewhurst TA, Deyo RA, Prodzinski J, McDonell M, Fihn SD (February 1995). "Development and evaluation of the Seattle Angina Questionnaire: a new functional status measure for coronary artery disease". Journal of the American College of Cardiology. 25 (2): 333–41. doi: 10.1016/0735-1097(94)00397-9 . PMID   7829785.
  7. ↑ Jitta DJ, DeJongste MJ, Kliphuis CM, Staal MJ (January 2011). "Multimorbidity, the predominant predictor of quality-of-life, following successful spinal cord stimulation for angina pectoris". Neuromodulation. 14 (1): 13–8, discussion 18–9. doi:10.1111/j.1525-1403.2010.00321.x. PMID   21992156. S2CID   35519046.
  8. ↑ Villano A, Di Franco A, Nerla R, Sestito A, Tarzia P, Lamendola P, et al. (July 2013). "Effects of ivabradine and ranolazine in patients with microvascular angina pectoris". The American Journal of Cardiology. 112 (1): 8–13. doi:10.1016/j.amjcard.2013.02.045. PMID   23558043.
  9. ↑ Andréll P, Ekre O, Grip L, Währborg P, Albertsson P, Eliasson T, et al. (March 2011). "Fatality, morbidity and quality of life in patients with refractory angina pectoris". International Journal of Cardiology. 147 (3): 377–82. doi:10.1016/j.ijcard.2009.09.538. PMID   19880202.
  10. ↑ Doward LC, Spoorenberg A, Cook SA, Whalley D, Helliwell PS, Kay LJ, et al. (January 2003). "Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis". Annals of the Rheumatic Diseases. 62 (1): 20–6. doi:10.1136/ard.62.1.20. PMC   1754293 . PMID   12480664.
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  13. ↑ Marzo-Ortega H, McGonagle D, O'Connor P, Emery P (September 2001). "Efficacy of etanercept in the treatment of the entheseal pathology in resistant spondylarthropathy: a clinical and magnetic resonance imaging study". Arthritis and Rheumatism. 44 (9): 2112–7. doi: 10.1002/1529-0131(200109)44:9<2112::AID-ART363>3.0.CO;2-H . PMID   11592375.
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  21. ↑ Arnold RJ, Zhou Y, Wong KS, Sung J (2005). "Psk8 Impact of Atopic Dermatitis on the Quality-Of-Life of Parents of Children with Atopic Dermatitis". Value in Health. 8 (3): 332. doi: 10.1016/S1098-3015(10)62872-0 .
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