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EQ-5D-3L

General

For what period of time does EQ-5D-3L record health status?

Self-reported health status captured by EQ-5D-3L relates to the respondent’s situation at the time of completion. No attempt is made to summarise the recalled health status over the preceding days or weeks, although EQ-5D-3L has been tested in recall mode. An early decision taken by the EuroQol Group determined that health status measurement ought to apply to the respondent’s immediate situation - hence the focus on ‘your own health state today’.

Can I use only the EQ-5D-3L descriptive system or only the EQ VAS?

We cannot advise this. EQ-5D-3L is a 2-part instrument so if you only use 1 part you cannot claim to have used EQ-5D-3L in your publications.

How long should the EQ VAS be?

Officially, for paper versions, the EQ VAS scale should be 20cms. All methodological and developmental work has been carried using this length. To ensure that you print the correct length, make sure your paper size is set at A4 and the box in your printing instructions labelled ‘scale to paper size’ is set at ‘no scaling’.

Can I publish our study using EQ-5D?

Yes, you are free to publish your results. If you are reproducing the EQ-5D-3L in an appendix we request that you use the sample version of EQ-5D-3L and that the following text is included in the footer: © 1990 EuroQol Group. EQ-5D™ is a trade mark of the EuroQol Group

What is the difference between the EQ-5D-3L descriptive system and the EQ VAS?

The descriptive system can be represented as a health state, e.g. health state 11212 represents a patient who indicates some problems on the usual activities and anxiety/depression dimensions. These health states can be converted to a single index value using (one of) the available EQ-5D-3L value sets. These value sets have been derived using VAS or TTO valuation techniques, and reflect the opinion of the general population. The EQ VAS scores are patient-based and are therefore not representative of the general population. The EQ VAS self-rating records the respondent’s own assessment of their health status. The EQ VAS scores however are anchored on 100 = best imaginable health and 0 = worst imaginable health, whereas the value sets are anchored on 11111 = 1 and dead = 0 and can therefore be used in QALY calculations.

What is the difference between the VAS and TTO techniques?

The difference between the value sets based on TTO and those based on VAS is that the techniques used for the elicitation of the values on which the models are based differ. In the TTO task, respondents are asked, for example, to imagine they live in a health state (e.g. 22222) for 10 years and then asked to specify the amount of time they are willing to give up to live in full health instead (i.e. 11111). For example, someone might find 8 years in 11111 equivalent to 10 years in 22222. The VAS technique on the other hand, asks people to indicate where, on a vertical thermometer-like scale ranging from best imaginable health to worst imaginable health, they think a health state should be positioned.

General population value sets vs patient population sets

If you want to undertake a utility analysis you will need to use a value set. Generally speaking utility analysis requires a general population-based value set (as opposed to a patient-based set). The rationale behind this is that the values are supposed to reflect the preferences of local taxpayers and potential receivers of healthcare. Additionally, patients tend to rate their health states higher than the general population because of coping etc, often underestimating their need for healthcare. The EQ-5D-3L value sets are therefore based on the values of the general population.

Multinational clinical trials

Information relating to EQ-5D health states gathered in the context of multinational trials may be converted into a single summary index using one of the available EQ-5D-3L value sets. There are different options available to do this using appropriate value sets-however the choice depends on the context in which the information will be used by researchers or decision makers. In cases where data from an international trial are to be used to inform decision makers in a specific country, it seems reasonable to expect decision makers to be interested primarily in value sets that reflect the values for EQ-5D-3L health states in that specific country. So for example, if applications for reimbursement of a drug are rolled out from country to country, country-specific value sets should be applied and reported in each pharmaco-economic report. This is no different from the requirement to use country-specific costs. In the absence of a country-specific value set, the researcher should select another set of values for a population that most closely approximates that country. Sometimes however, information about utilities is required to inform researchers or decision makers in an international context. In these instances, 1 value set applied over all EQ-5D health states data is probably more appropriate. The decision about which value set to use will also depend on whether the relevant decision making body in each country specifies any requirements or preferences in regard to the methodology used in different contexts (e.g. TTO, standard gamble (SG), VAS or discrete choice modelling (DCM)). These guidelines are the topic of an international ongoing debate but the EuroQol Group website is planning to provide a summary of health care decision-making bodies internationally, and their stated requirements regarding the valuation of health states. Detailed information regarding the valuation protocols, guidelines on which value set to use and tables of all available value sets has recently been published by Springer in: EuroQol Group Monograph series: Volume 2: EQ-5D value sets: inventory, comparative review and user guide’ (see section 8 for more information). Chapter 4 by Nancy Devlin and David Parkin will be of special interest to researchers pondering the issue of which value set to use.

Registration

How can I obtain the EQ-5D-3L instrument?

If you have already seen the EQ-5D-3L and/or decided to go ahead and use it, please register your study/project/trial first, by completing the EQ-5D registration form. The EuroQol Executive Office will then contact you by e-mail and inform you about the terms and conditions which apply to your use of the EQ-5D-3L, including licensing fees (if applicable). Please allow 3 working days to receive this reply.

I am not conducting a study but would like to use the EQ-5D to measure clinical outomes. Do I still need to register?

Yes. You can only obtain EQ-5D versions by completing the EQ-5D Registration Form.

Licensing

Do I have to pay for using the EQ-5D-3L questionnaire?

Licensing fees are determined by the EuroQol Executive Office on the basis of the user information provided on the registration form. The amount is dependent upon the type of study, funding source, sample size and number of requested languages. You are not obligated to purchase by registering.

Copyright

Is the EQ-5D-3L a copyrighted instrument?

Yes. Please note that without the prior written consent of the EuroQol Executive Office, you are not permitted to i.e. use, reproduce, alter, amend, convert, translate, publish or make available in whatever way (digital, hard-copy etc.) the EQ-5D-3L and related proprietary materials.

The EuroQol Group stresses that any and all copyrights in the EQ-5D, its (digital) representations, and its translations exclusively vest in the EuroQol Group. EQ-5D™ is a trade mark of the EuroQol Group.

EQ-5D-5L

General

For what period of time does EQ-5D-5L record health status?

Self-reported health status captured by EQ-5D-5L relates to the respondent’s situation at the time of completion. No attempt is made to summarise recalled health status over the preceding days or weeks, although EQ-5D-3L has been tested in recall mode. An early decision taken by the EuroQol Group determined that health status measurement ought to apply to the respondent’s immediate situation - hence the focus on ‘your health today’.

Can I use only the EQ-5D-5L descriptive system or only the EQ VAS?

We cannot advise this. EQ-5D-5L is a 2-part instrument so if you only use one part you cannot claim to have used EQ-5D-5L in your publications.

How long should the EQ VAS be?

Officially, for paper versions, the EQ VAS scale should be 20cms. All methodological and developmental work has been carried using this length. To ensure that you print the correct length, make sure your paper size is set at A4 and the box in your printing instructions labelled ‘scale to paper size’ is set at ‘no scaling’.

Can I publish our study using EQ-5D?

Yes, you are free to publish your results. If you are reproducing the EQ-5D-5L in an appendix we request that you use the sample version of EQ-5D-5L and that the following text is included in the footer: © 1990 EuroQol Group. EQ-5D™ is a trade mark of the EuroQol Group

What is the difference between the EQ-5D-5L descriptive system and the EQ VAS?

The descriptive system can be represented as a health state, e.g. health state 21143 represents a patient who indicates slight problems on the mobility dimension, no problems on the self-care and usual activities dimensions, severe pain or discomfort, and moderate problems on the anxiety/depression dimension. These health states can be converted to a single index value using the crosswalk link function based on the existing value sets for the EQ-5D-3L described in Section 4 above. These EQ-5D-3L value sets are based on VAS or TTO valuation techniques, and reflect the opinion of the general population. The EQ VAS scores are patient-based and are therefore not representative of the general population. The EQ VAS self-rating records the respondent’s own assessment of their health status. The EQ VAS scores however are anchored on 100 = the best health you can imagine and 0 = the worst health you can imagine, whereas the value sets are anchored on 11111 = 1 and dead = 0 and can therefore be used in QALY calculations.

What is the difference between the VAS and TTO techniques?

The difference between the TTO- and VAS-based value sets is that the techniques used to elicit the values on which the models are based differ. In the TTO task, respondents are asked to imagine that they will live in a certain health state (e.g. 33333) for 10 years and have to specify the amount of time they would be willing to give up to live in full health instead (i.e. 11111). For example, someone might find 8 years in 11111 equivalent to 10 years in 33333. The VAS technique on the other hand, asks people to indicate where, on a vertical thermometer-like scale ranging from best imaginable health to worst imaginable health, they think a health state should be positioned.

General population value sets vs. patient population value sets

If you want to undertake a utility analysis you will need to use a value set. Generally speaking, utility analysis requires a general population-based value set (as opposed to a patient-based set). The rationale behind this is that the values should reflect the preferences of local taxpayers and potential receivers of healthcare. Additionally, patients tend to rate their health states higher than the general population because of coping or other factors, and may therefore underestimate their need for healthcare. EQ-5D-5L value sets are therefore based on general population values.

Multinational clinical trials

Information relating to EQ-5D-5L health states gathered in the context of multinational trials may be converted into a single index value using the crosswalk link function based on the available EQ-5D-3L value sets as described in Section 4 above. There are different options available to do this using appropriate value sets-however the choice depends on the context in which the information will be used by researchers or decision makers. In cases where data from an international trial are to be used to inform decision makers in a specific country, it seems reasonable to expect decision makers to be interested primarily in value sets that reflect the values for health states in that country. So for example, if applications for reimbursement of a drug are rolled out from country to country, country-specific value sets should be applied and reported in each pharmaco-economic report. This is no different from the requirement to use country specific costs. In the absence of a country-specific value set, the researcher should select another set of values for a population that most closely approximates that country. Sometimes however, information about index values ('utilities') is required to inform researchers or decision makers in an international context. In these instances, one value set applied over all health states data is probably more appropriate. The decision about which value set to use will also depend on whether the relevant decision making body in each country specifies any requirements or preferences in regard to the methodology used in different contexts (e.g. TTO, standard gamble (SG), VAS or discrete choice modelling (DCM)). These guidelines are the topic of an on-going, international debate but the EuroQol Group website is planning to provide a summary of health care decision-making bodies internationally together with their stated requirements regarding the valuation of health states. Detailed information on valuation protocols together with guidelines on which value set to use and tables of all available value sets has recently been published by Springer in: EuroQol Group Monograph series: Volume 2: EQ-5D value sets: inventory, comparative review and user guide’ (see section 8 for more information). Chapter 4 by Nancy Devlin and David Parkin will be of special interest to researchers pondering the issue of which value set to use.

Registration

How can I obtain the EQ-5D-5L instrument?

If you have already seen the EQ-5D-5L and/or decided to go ahead and use it, please register your study/project/trial first, by completing the EQ-5D registration form. The EuroQol Executive Office will then contact you by e-mail and inform you about the terms and conditions which apply to your use of the EQ-5D-5L, including licensing fees (if applicable). Please allow 3 working days to receive this reply.

I am not conducting a study but would like to use the EQ-5D to measure clinical outomes. Do I still need to register?

Yes. You can only obtain EQ-5D versions by completing the EQ-5D Registration Form.

Licensing

Do I have to pay for using the EQ-5D-5L questionnaire?

Licensing fees are determined by the EuroQol Executive Office on the basis of the user information provided on the registration form. The amount is dependent upon the type of study, funding source, sample size and number of requested languages. You are not obligated to purchase by registering.

Copyright

Is the EQ-5D-5L a copyrighted instrument?

Yes. Please note that without the prior written consent of the EuroQol Executive Office, you are not permitted to i.e. use, reproduce, alter, amend, convert, translate, publish or make available in whatever way (digital, hard-copy etc.) the EQ-5D-5L and related proprietary materials.

The EuroQol Group stresses that any and all copyrights in the EQ-5D, its (digital) representations, and its translations exclusively vest in the EuroQol Group. EQ-5D™ is a trade mark of the EuroQol Group.

EQ-5D Web version

General

What is the EQ-5D online system?

The EQ-5D online system is a centrally managed, web-based, safe and yet open system that allows respondents from all over the world to use the EQ-5D.

Why did the EuroQol Group decide to use a centrally managed web-based EQ-5D version?

The Group considered it to be very important to safeguard the visual implementation of the suite of EQ-5D questionnaires. Over the past years we have seen a wide array of different web-based EQ-5D implementations that have not always been up to the quality and scientific rigor that we would hope for. Therefore, we have come up with a centrally managed solution that is designed and approved by the EuroQol Group while ensuring uniformity across studies.

Licensing

We would like to make use of the official web version of the EQ-5D. What do we need to do to?

You will need a “web licence” for the EQ-5D. This allows you to connect to the EQ-5D system. This licence can only be issued by the EuroQol Group’s Executive office in Rotterdam, the Netherlands.

How do we obtain a licence?

Please contact the EuroQol Executive office at userinformationservice(at)euroqol.org

Are there any costs associated with using the EQ-5D online system?

In instances of ‘commercial’ use (e.g. pharmaceutical companies or medical device manufacturers), a licence fee must be negotiated with the EuroQol Executive office. For non commercial use (e.g. academic or clinical studies), 500 Euros is requested for start up costs.

The EQ-5D system requests an activation code. What is it and do I need it?

Each digital licence is associated with an activation code. Whenever the EQ-5D is rendered, you will (implicitly or explicitly) need to supply this code. The code can be tied to an EQ-5D language-licence, a project-licence, a periodical licence, per quota or a companywide licence.

Can we do multiple projects with one licence?

Yes you can. This depends on the arrangement you agree with the EuroQol Group Executive office. You can obtain a company-wide licence which means that you can use the EQ-5D online system for all of your projects.

How many participants can use the EQ-5D?

This number is in theory unlimited but can be limited by the constraints set out in the licence agreement.

I am fielding a study or project in multiple languages. Does the EQ-5D online system offer multi-languages?

1. Yes. Over time all languages available in paper format will be adapted for web use and introduced into the EQ-5D online system.  
2. You can select any number of language combinations in your licence arrangement. The activation code will only permit the languages specified in the licence arrangement.

Can we obtain a web licence and then create our own web version of the EQ-5D?

Unfortunately no. The EuroQol Group made a strategic decision that it wants to centrally manage the appearance and the usage of EQ-5D. We are aware that certain companies are able and willing to re-create the EQ-5D visually but this is not permitted. Unauthorized usage of the EQ-5D outside of the EQ-5D online system will be challenged and if necessary, referred to the Group’s legal advisors.

Technical

We have our own in-house survey platform, how can I connect to the EQ-5D online server?

The EuroQol Group has documentation and guidance on how to connect your in-house survey platform to the EQ-5D on-line system. The linking of the two requires a few very common and cross-browser compatible techniques. Please ask the EuroQol Group Executive office for a copy of the “Licensed Partner Connect Manual” for the exact technical requirements for linking your system.

We would like to store the EQ-5D answers in our own survey system. Is this possible?

Yes. The EuroQol Group makes available a number of methods for receiving back the data:

1. Direct data handoff: for each individual EQ-5D respondent that completes the EQ-5D, the data are directly (real-time) posted back to the calling system (e.g. the in-house survey platform).  You will have to make a small customization to your in-house survey system. These changes are described in the “Licensed Partner Connect Manual”. This manual can be requested. Please contact the EuroQol Group.
2. Data transfer by e-mail (“MailMeBack”-option): for each completed EQ-5D, an e-mail containing the data in tabular format and XML format is sent to a specified  e-mail address that has been defined as part of the licence agreement. This mechanism allows companies unable or unwilling to use the “direct data handoff method” to receive data back real-time. 
3. Bulk data downloads: on request, the EuroQol Group can download all EQ-5D administrations (for a specific licence) and distribute to the client.

We would like to receive all the data from EQ-5D at once. Is this possible?

Yes. On request we can send you an interim or final EQ-5D dataset for all the data that you collected according to your EQ-5D licence.

What are the technical requirements for respondents answering EQ-5D?

JavaScript has to be enabled on the respondent’s machine. If not enabled, the respondent will be notified of that fact and also he/she will not be able to answer the EQ-5D questions.  This JavaScript requirement is in-line with today’s de facto industry standards.

We do not have our own survey platform, but still want to receive EQ-5D data back on an individual level. Is this possible?

Yes. One of the features for receiving data is the “MailMeBack” option. This feature creates an e-mail, containing the data for an individual EQ-5D administration, that is sent immediately after a respondent completes the EQ-5D. E-mails are sent to an e-mail address specified by the client (licence-holder) as part of the licence.

We do not have our own survey platform but want to bundle the EQ-5D online system with other questionnaires. Do you have options for this?

Yes. We have a number of options:

1. We offer a stand-alone HTML page that you can link to. With this HTML page your respondents can manually trigger the start of an EQ-5D administration. You will have to instruct your respondents to enter their study ID (which should be an ID meaningful to you). We will then store the EQ-5D data together with this ID. When receiving back this data, you will also see the ID so you can match up the EQ-5D data with the other data you intend to collect from respondents.
2. We can introduce you to companies that can field any other questionnaire alongside the EQ-5D.

Privacy

Is the EQ-5D online system safe?

Yes, we have taken a number of precautions:

a. We use a secure web-server. This prevents eavesdropping on communication with parameters/
b. All communication is done through HTTP Post methods (instead of GET methods which allow the snatching of data though browser history).
c. We do not collect any user identifiable information. For storage of EQ-5D records, we use an internal ID numbering scheme. Although we allow you to provide us with a custom respondent ID (meaningful only to you) when one of your respondent’s answers the EQ-5D, this ID does not show up as a visible field to any of our administrators.
d. The EuroQol Group’s EQ-5D system is compliant with the EU Directive on Data Privacy, HIPAA, EMEA Annex 11, CFR 21 Part 11. We store a full audit trail of all data collected. This is done on an anonymous basis based on our internal ID numbering scheme.  In other words, we don’t know who the data is for. However, if you approach us and request documented proof that authentic data was collected for the respondent IDs you supplied us with, we could provide this information.
e. Once an EQ-5D is completed, the record is locked and cannot be re-displayed again. 

Is your system EMEA annex 11 compliant?

Yes, including, but not limited to, the following features are present:
a. Access to the system requires a username and a password. All passwords are required to have specific characteristics (include both letters and numbers and longer than 7 characters) to ensure they are not easy to guess. They are required to be changed on a regular basis. Furthermore, the software ensures that passwords cannot be repeated.
b. All actions taken in the database are recorded in a secure audit trail so it is possible to review what was done by which username and when it was done.
c. All data is stored on a central server backed up daily in a certified hosting facility so the data is secure. Furthermore, data is not stored locally on the user’s system. Once the submit button is pushed on a page the data is committed to the database.
d. The system is fully documented and tested so that it meets the requirements in the documentation. This documentation is available for review upon reasonable notice by relevant parties.
e. The EuroQol Group does not routinely claim copyright of any data collected using the online system.

Do you keep a copy of the data?

Yes, we keep a copy of the data to ensure that we are able to generate a full audit trail of all data in the system and to prove the authenticity of that data collection; However, this is done in an anonymous way (i.e. we don’t know (and don’t want to know) the identity of the EQ-5D respondents).