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EuroQoL-5 Dimension Questionnaire (EQ-5D)
Please visit this website for more information about the instrument: EuroQol-5 Dimension Questionnaire
Must register the study in which EQ-5D is to be used by completing the EQ-5D registration form (visit EuroQol-5 Dimension Questionnaire website). The EuroQol Executive Office will then contact by e-mail and inform about the terms and conditions which apply to your use of the EQ-5D, including licensing fees (if applicable). Please allow three working days to receive this reply. The EuroQol Executive Office determines licensing fees based on the user-provided information. The amount is dependent upon the type of study, size and/or number of users and requested languages. Without the prior written consent of the EuroQol Executive Office, you are not permitted to use, reproduce, alter, amend, convert, translate, publish or make available in whatever way (digital, hard-copy etc.) the EQ-5D and related proprietary materials. All copyrights in the EQ-5D, its (digital) representations, and its translations exclusively vest in the EuroQol Group. EQ-5D™ is a trademark of the EuroQol Group.
Supplemental - Highly Recommended: *Mitochondrial Disease (Mito), **Parkinson's Disease (PD), and Stroke (based on study type, disease stage and disease type)
*Recommendations for use: 5L version is indicated for interventional studies requiring a measure of quality of life. Either the EuroQoL-5D-5L or SF-36/SF-12 is recommended.
**Recommendations for use: Indicated for studies as a Generic Health-Related Quality of Life measure.
Supplemental: Amyotrophic Lateral Sclerosis (ALS), Headache, Multiple Sclerosis (MS), Neuromuscular Disease (NMD), Spinal Cord Injury (SCI), and Traumatic Brain Injury (TBI)
Exploratory: Huntington's Disease (HD), Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS), and Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage (SAH)
Short Description of Instrument
Construct measured: Quality of Life / Self-reported Patient Satisfaction
Generic vs. disease-specific: Generic
Means of administration: Self-Administered
EQ-5D is designed for self-completion by respondents and is ideally suited for use in postal surveys, in clinics, and in face-to-face interviews. It is cognitively undemanding, taking only a few minutes to complete. Instructions to respondents are included in the questionnaire. It is currently available in 102 languages.
Intended respondent: Patient
# of items: 5
# of subscales and names of sub-scales: Each question, from which the summary index is derived, can also be presented individually. There is an additional VAS of general health.
# of items per sub-scale: 1
EQ-5D, the adult version, can be used for youth over 16.
For children aged 4 -7 a proxy version can be used.
Two proxy versions:
Proxy 1: The proxy rates the health of the child.
Proxy 2: The proxy rates how they think the child would rate their own state if they were asked directly and could communicate it.
It is recommended to use Proxy 1 (if applicable) and can be applied to children from 4 -7 years and to children over 8 years who are not able to complete the EQ-5DY themselves.
EQ-5D is specific to teenagers and adults, but there is an EQ-5D-Y (EQ-5D-Youth version) which is an EQ-5D-3L self-complete version for children and adolescents aged 7 -12. The EQ-5D consists of two parts: the EQ-5D section and the EQ VAS section. These sections provide a composite picture of the respondent's health status. The EQ-5D consists of 5 questions (representing 5 dimensions of mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) each with a single digit response option. The EQ VAS generates a self-rating of health-related quality of life.
Studies have found moderate agreement between responses from patients and those from their proxies for some of the domains of the EQ-5D and the agreement between patient and proxy is the best when assessed at six months, rather than two to three weeks, after stroke. Reproducibility is better when patients completed the instrument instead of their proxies. The relationship between the EQ-5D and the Barthel Index and mapping the modified Rankin Scale to the EQ-5D have been explored. Except for the SF-36 mental health domain, EQ-5D and SF-36 measure similar domains with similar test-retest reliability.
Comments/Special Instructions
Background: EQ-5D is a standardized measure of health status developed by the EuroQol Group to provide a simple, generic measure of health for clinical and economic appraisal. Applicable to a wide range of health conditions and treatments, it provides a simple descriptive profile and a single index value for health status that can be used in the clinical and economic evaluation of health care as well as in population health surveys.
The EQ-5D self-report questionnaire essentially consists of two pages comprising the EQ-5D descriptive system (page 2) and the EQ VAS (page 3). There is also an optional page of demographic questions. There is also an extended version of EQ-5D that incorporates the valuation task but this is only used for valuation studies and is not relevant for clinical users.
The EQ-5DY is the child-friendly version of the EQ-5D, with language modifications, such as changing the word "depression" to "sad". (Burstrom et al., 2011) The main differences between the EQ-5D and the EQ-5D-Y are revisions to domain definitions, introduction of age-appropriate wording and adaptations to layout. The purpose of the adaptation was to clarify the meaning of dimensions for younger respondents and to establish that items referred exclusively to health-related impairment and not to age-related difficulties. For example, "self-care" was modified to "looking after myself" and the usual activities domain listed going to school, hobbies, sports, playing, and doing things with family or friends as the examples of activities. (Burstrom et al., 2014; Wille et al., 2010)
Scoring and Psychometric Properties
Scoring: Each of the 5 EQ-5D descriptive dimensions has 3 levels: no problems, some problems, severe problems. A 5-level version has also been developed (EQ-5D-5L) and validated. The respondent indicates their health state by ticking in the box against the most appropriate statement in each of the 5 dimensions. This decision results in a 1-digit number expressing the level selected for that dimension. The digits for 5 dimensions can be combined in a 5-digit number describing the respondent's health state. It should be noted that the numerals 1-3 have no arithmetic properties and should not be used as a cardinal score. Missing values should be coded as '999'. Ambiguous values (e.g., the line crosses the VAS twice) should be treated as missing values.
Psychometric Properties: Test-retest reliability: ICC =.81 (Canadian study population); Construct validity: Spearman correlation with other utility measures: SF-6D, r=.70; HUI- III, r=0.80; Correlates with EDSS: Spearman r= -.66 in a Canadian study population, Pearson r= -.54 in a German study population; 9HPT: r= - 0.56; timed 25-foot walk: r= -.63; ambulation index: r= -.68; Ceiling effects may be evident in patients with less marked disability. The scale is widely used in European countries for the assessment of health-related quality of life but also as a health-economic measures that allows calculation of Quality-Adjusted Life Years (QALYs). In PD, it has been used in numerous studies and acceptable sensitivity to change, but it has been criticized for missing disease-specific domains.
Feasibility/validity: Feasibility and discriminative validity of the EQ-5D-Y was supported in a Swedish patient sample with children and adolescents with functional disability, but additional studies with more participants are necessary (Burstrom et al., 2014).
Mitochondrial Disease-Specific:
Strengths: This is a simple and well validated scale with no recall bias as it asks for status "right now". It also has visual analog scale which can be used for longitudinal assessments of mitochondrial patients. It is a good "quick" questionnaire, translated in many languages and although non-specific to mitochondrial disease, it is deemed helpful in capturing data in the pediatric group as a supplement to a more elaborate questionnaire. This scale can be used to estimate the cost of illness at introduction and in post-market studies.
Weaknesses: Generic, non-disease specific. Might not capture all the nuances of the intricate mitochondrial patients' limitations. No instrument for children under the age of 7.
Strengths: This scale has the advantage of prior use in ME/CFS and importantly, comparison data with general population and specific illness population. It is not at all burdensome to complete. There is a great deal of comparison data, as shown in Hvidberg et al., 2015.
Weaknesses: The scale is very brief and focuses only on the current day. It is a helpful snapshot of exacerbations on a particular day, but does not capture disability, QoL impact and changes over time or multiple dimensions of QoL. It asks about ADLs on the one hand, and asks about work/school on the other, which is a wide spread for ME/CFS patients.
Key References:
EuroQol Group. EuroQol--a new facility for the measurement of health-related quality of life. Health Policy. 1990 Dec;16(3):199-208.
Dolan P. Modeling valuations for EuroQol health states. Med Care. 1997 Nov;35(11):1095-108.
Burstrom K, Bartonek A, Brostrom EW, Sun S, Egmar AC. EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: testing feasibility and validity. Acta Paediatr. 2014 Apr;103(4):426-35.
Burstrom K, Egmar AC, Lugner A, Eriksson M, Svartengren M. A Swedish child-friendly pilot version of the EQ-5D instrument--the development process. Eur J Public Health. 2011 Apr;21(2):171-7.
Noyes J, Edwards RT. EQ-5D for the assessment of health-related quality of life and resource allocation in children: a systematic methodological review. Value Health. 2011 Dec;14(8):1117-29.
Wille N, Badia X, Bonsel G, Burstrom K, Cavrini G, Devlin N, Egmar AC, Greiner W, Gusi N, Herdman M, Jelsma J, Kind P, Scalone L, Ravens-Sieberer U. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res. 2010 Aug;19(6):875-86.
ALS-Specific Reference:
EuroQol Group. EuroQol--a new facility for the measurement of health-related quality of life. Health Policy. 1990 Dec;16(3):199-208.
Headache-Specific References:
Stafford MR, Hareendran A, Ng-Mak DS, Insinga RP, Xu R, Stull DE. EQ-5D™-derived utility values for different levels of migraine severity from a UK sample of migraineurs. Health Qual Life Outcomes. 2012 Jun 12;10:65.
Xu R, Insinga RP, Golden W, Hu XH. EuroQol (EQ-5D) health utility scores for patients with migraine. Qual Life Res. 2011 May;20(4):601-8.
ME/CFS-Specific References:
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421.
Myers C, Wilks D. Comparison of Euroqol EQ-5D and SF-36 in patients with chronic fatigue syndrome. Qual Life Res. 1999;8(1-2):9-16.
Mitochondrial Disease-Specific References: None published.
MS-Specific References:
Fisk JD, Brown MG, Sketris IS, Metz LM, Murray TJ, Stadnyk KJ. A comparison of health utility measures for the evaluation of multiple sclerosis treatments. J Neurol Neurosurg Psychiatry. 2005 Jan;76(1):58-63.
Putzki N, Fischer J, Gottwald K, Reifschneider G, Ries S, Siever A, Hoffmann F, Kafferlein W, Kausch U, Liedtke M, Kirchmeier J, Gmund S, Richter A, Schicklmaier P, Niemczyk G, Wernsdorfer C, Hartung HP; "Mensch im Mittelpunkt" Study Group. Quality of life in 1000 patients with early relapsing-remitting multiple sclerosis. Eur J Neurol. 2009 Jun;16(6):713-20.
Parkinson's Disease-Specific References:
Alvarado-Bolanos A, Cervantes-Arriaga A, Rodriguez-Violante M, Llorens-Arenas R, Calderon-Fajardo H, Millan-Cepeda R, Leal-Ortega R, Estrada-Bellmann I, Zuniga-Ramirez C. Convergent validation of EQ-5D-5L in patients with Parkinson's disease. J Neurol Sci. 2015 Nov 15;358(1-2):53-7.
Garcia-Gordillo M, del Pozo-Cruz B, Adsuar JC, Sanchez-Martinez FI, Abellan-Perpinan JM. Validation and comparison of 15-D and EQ-5D-5L instruments in a Spanish Parkinson's disease population sample. Qual Life Res. 2014 May;23(4):1315-26.
Noyes K, Dick AW, Holloway RG; Parkinson Study Group. Pramipexole versus levodopa in patients with early Parkinson's disease: effect on generic and disease-specific quality of life. Value Health. 2006 Jan-Feb;9(1):28-38.
Schrag A, Selai C, Jahanshahi M, Quinn NP. The EQ-5D--a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry. 2000 Jul;69(1):67-73.
Stroke-Specific References:
Dorman PJ, Dennis M, Sandercock P. How do scores on the EuroQol relate to scores on the SF-36 after stroke? Stroke. 1999 Oct;30(10):2146-51.
Dorman P, Slattery J, Farrell B, Dennis M, Sandercock P. Qualitative comparison of the reliability of health status assessments with the EuroQol and SF-36 questionnaires after stroke. United Kingdom Collaborators in the International Stroke Trial. Stroke. 1998 Jan;29(1):63-8.
Dorman PJ, Waddell F, Slattery J, Dennis M, Sandercock P. Are proxy assessments of health status after stroke with the EuroQol questionnaire feasible, accurate, and unbiased? Stroke. 1997b Oct;28(10):1883-7.
Dorman PJ, Waddell F, Slattery J, Dennis M, Sandercock P. Is the EuroQol a valid measure of health-related quality of life after stroke? Stroke. 1997a Oct;28(10):1876-82.
Pickard AS, Johnson JA, Feeny DH, Shuaib A, Carriere KC, Nasser AM. Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and Health Utilities Index. Stroke. 2004 Feb;35(2):607-12.
Rivero-Arias O, Ouellet M, Gray A, Wolstenholme J, Rothwell PM, Luengo-Fernandez R. Mapping the modified Rankin scale (mRS) measurement into the generic EuroQol (EQ-5D) health outcome. Med Decis Making. 2010 May-Jun;30(3):341-54.
van Exel NJ, Scholte op Reimer WJ, Koopmanschap MA. Assessment of post-stroke quality of life in cost-effectiveness studies: the usefulness of the Barthel Index and the EuroQoL-5D. Qual Life Res. 2004 Mar;13(2):427-33.
Document last updated March 2024