Frequently Asked Questions (FAQs)

Q. What is the DLQI?
Q. Can I use the DLQI in routine clinical practice?
Q. I am a patient. Can I use the DLQI?
Q. How long does it take to complete the DLQI?
Q. Is there any need to get permission for the use of the DLQI?
Q. How is the DLQI scored?
Q. Please can you explain the wording of Question 7?
Q. How do you handle missing data from DLQI?
Q. If someone answers “No” or “Not at all” & “Not Relevant” at the same time, how do we score the answer?
Q. What is the time frame of the DLQI?
Q. Can the DLQI be used to aid in decision-making in day-to-day clinical practice?
Q. What are the different subscales/dimensions of the DLQI and how do you score these?
Q. What do the DLQI scores mean?
Q. How frequently can the DLQI be used?
Q. What age group is the DLQI valid for?
Q. How can I translate a QoL questionnaire into another language?
Q. Would it be possible to change the format or design of the DLQI to adapt it to individual research studies/objectives?
Q. What languages has the DLQI been translated into?
Q. Can I adjust the language of the original English DLQI to adapt to international variability?
Q. What are the terms and conditions for the use of the DLQI?
Q. What is the procedure if someone wants to use the DLQI?
Q. Why are there sometimes charges for using the DLQI?
Q. What are the charges for the use of the DLQI?
Q. How to make payment for using the DLQI?
Q. Why is the DLQI copyrighted?
Q. Is the DLQI Trademarked?
Q. What are the guidelines for acknowledging copyright of the DLQI?
Q. Who should be contacted to get permission for using the DLQI?
Q. Who is the person to contact for payment related queries?
Q. What resources are available to find validation data of the DLQI?
Q. Where can I find the relevant publications?
Q. Could the DLQI be administered over the telephone?
Q. Is there any computerised version of the DLQI?
Q. How does the DLQI differ from the CDLQI?
Q. What is the difference between the text and cartoon version of the CDLQI?
Q. With regard to how we layout the questionnaire, without altering the questionnaire itself, would it be possible to add the numbers for scoring beside the answer choices for ease of scoring?
Q. In the DLQI questionnaire “Not relevant” option is available except for questions 1& 2. If this option is ticked, how do we calculate the total score? Will that interfere in the statistical analysis of a clinical study?
Q. Do you recommend patients be encouraged not to tick the option “Not relevant” but choose a specific response closest to their experience?
Q. What is the minimum time interval between two administrations of the DLQI?
Q. Can I add some questions in the DLQI?
Q. Is it possible to produce a “literal translation” of the measure, with no deviation from the English version?
Q. Do I need formal permission to use the DLQI for my undergraduate or postgraduate research project?
Q. Can I analyse DLQI data combined with CDLQI data?
Q. Do you also provide permission for using the PASI?
Q. Why is 16 the minimum suggested age for using the DLQI?
Q. The severity bandings for the DLQI and CDLQI state ’0-1= no effect on patient’s life…’ and ‘…child’s life’, respectively. Why is the phrase ‘Quality of Life’ not used instead?
Q. Is there an age cut-off up to which the parent or guardian can assist in completing the CDLQI?
Q. Is it possible to administer the DLQI via an electronic format?
Q. When developing electronic formats of the DLQI or CDLQI, can patients be allowed to skip questions entirely without answering them or must the software be set up to require that patients respond to every single question?
Q. Who may complete the FDLQI questionnaire?
Q. Does the same relative have to complete the FDLQI at each follow up?
Q. Do I need the permission of the translators of the DLQI to use it?
Q. Can the CDLQI or DLQI be used outside the validated age ranges?
Q. Is it a requirement for users of the DLQI (or any other of our quality of life measures) to share results with Cardiff University or the copyright holders?


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Q. What is the DLQI?

The DLQI is a simple self-administered, easy and user-friendly validated questionnaire used to measure the health-related quality of life of adult patients suffering from a skin disease. Developed in 1994, the DLQI was the first dermatology-specific Quality of Life instrument. The DLQI may be used for routine clinical use by clinicians in order to assist the clinical consultation, evaluation and clinical decision making process.

It consists of 10 questions concerning patients’ perception of the impact of skin diseases on different aspects of their health related quality of life over the last week. It has been validated for adult dermatology patients aged 16 years and older. The items of the DLQI encompass aspects such as symptoms and feelings, daily activities, leisure, work or school, personal relationships and the side effects of treatment.
Each question is scored on a 4-point Likert scale: Not at all/Not relevant=0, A little=1, A lot=2 and Very much=3. Scores of individual items (0-3) are added to yield a total score (0-30); higher scores mean greater impairment of patient’s QoL.
The average completion time of the questionnaire is 2 minutes.
The DLQI has been used in at least 33 different skin conditions in over 32 countries and is available in over 85 language versions. Its use has been described in over 800 publications including 30 multinational studies. The DLQI is the most frequently used quality of life instrument in randomised controlled trials in dermatology.

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Q. Can I use the DLQI in routine clinical practice?

Yes, the DLQI may be used for routine clinical use by clinicians in order to assist the clinical consultation, patient evaluation and monitoring and to help with clinical decision making process.

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Q. I am a patient. Can I use the DLQI?

Yes, the DLQI may be used by individual patients in order to help their communication with their physicians. There is no need to ask for permission and there is no charge.

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Q. How long does it take to complete the DLQI?

The DLQI is a simple, self-administered, easy and user-friendly questionnaire with an average completion time of 2 minutes.

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Q. Is there any need to get permission for the use of the DLQI?

There is no need to seek specific permission for using the DLQI in routine clinical practice and there is no charge for the use of the DLQI in this context. However it is a requirement that every copy of the DLQI, in whatever language, should always reprint at the end of the DLQI, the following copyright statement:

© A Y Finlay, G K Khan April 1992 www.dermatology.org.uk

For the use of the instrument in research studies and for other purposes, formal permission must be sought from the original copyright holders of the DLQI before the start of the study.

There is a simple method for getting formal permission for use of the DLQI. Formal permission is usually given immediately. Please e-mail to one of the following contacts:

For general queries, technical aspects and permission to use:
E-mail: dermqol@cf.ac.uk

Other contacts:

Mrs Joy Hayes (contractual financial aspects): HayesJ@cf.ac.uk

Professor Andrew Y Finlay: FinlayAY@cf.ac.uk

Address:

Department of Dermatology
Cardiff University School of Medicine
Heath Park, Cardiff
CF14 4XN
United Kingdom
Te: +44 (0)29 2074 2884
Fax: +44 (0) 29 2074 4321

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Q. How is the DLQI scored?

The scoring of each answer is as follows:

Very much scored 3
A lot scored 2
A little scored 1
Not at all scored 0
Not relevant scored 0
Question unanswered scored 0
Question 7: “prevented work or studying” scored 3

The DLQI is calculated by adding the score of each question. The maximum score is 30 and the minimum is 0. The higher the score, the more quality of life is impaired. The DLQI can be expressed as a percentage of the maximum possible score of 30 but we do not recommend this because the “original” score is much easier to understand.
Please Note: The scores associated with the different answers should not be printed on the DLQI itself, as this might cause bias.

Meaning of DLQI Scores

0-1 = no effect at all on patient’s life
2-5 = small effect on patient’s life
6-10 = moderate effect on patient’s life
11-20 = very large effect on patient’s life
21-30 = extremely large effect on patient’s life

 

Detailed analysis of the DLQI

Symptoms and feelings Questions 1 and 2 Score maximum 6
Daily activities Questions 3 and 4 Score maximum 6
Leisure Questions 5 and 6 Score maximum 6
Work and School Question 7 Score maximum 3
Personal relationships Questions 8 and 9 Score maximum 6
Treatment Question 10 Score maximum 3

 

The scores for each of these sections can also be expressed as a percentage of either 6 or 3.


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Q. Please can you explain the wording of Question 7?

The first part of Question 7 asks: “Over the last week, has your skin prevented you from working or studying?”

If the skin disease has prevented the subject from working or studying, the answer is “yes”. As “prevention” is the biggest possible impact it is scored the maximum, i.e. 3. If working or studying are not relevant to the subject, they are able to respond “Not relevant” (scored 0). If the skin disease has not prevented the subject from working or studying, the answer is “no”.

In that case it is assumed that as the skin disease has not prevented the subject from working or studying, the subject is able to continue to work or study but that the skin disease may be a problem while doing so. The subject is therefore asked the following question about the magnitude of the impact: “If “No” (in other words “If the skin disease has not prevented you from working or studying”), over the last week how much has your skin been a problem at work or studying?”

There are three possible responses to the question “How much has your skin been a problem at work or studying”: “A lot” (scored 2), “A little” (scored 1) or “Not at all” (scored 0).


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Q. How do you handle missing data from DLQI?

There is a very high success rate of accurate completion of the DLQI. However, sometimes subjects do make mistakes.

  • If one question is left unanswered this is scored 0 and the scores are summed and expressed as usual out of a maximum of 30.
  • If two or more questions are left unanswered the questionnaire is not scored.
  • If question 7 is answered ‘yes’ this is scored 3 even if in the same question one of the other boxes is ticked.
  • If question 7 is answered ‘no’ or ‘not relevant’ but then either ‘a lot’ or ‘a little’ is ticked this is then scored 2 or 1.
  • If two or more response options are ticked for one question, the response option with the highest score should be recorded.
  • If there is a response between two tick boxes, the lower of the two score options should be recorded.
  • The DLQI can be analysed by calculating the score for each of its six sub-scales (see above). When using sub-scales, if the answer to one question in a sub-scale is missing, that sub-scale should not be scored.


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Q. If someone answers “No” or “Not at all” & “Not Relevant” at the same time, how do we score the answer?

  • “Not relevant” is always scored 0.
  • “Not at all” is always scored 0.
  • The only place in the questionnaire that has “No” as an option is in the first part of question 7. There is no score associated with “No”. This is because it is expected that if a patient answers “No” in the first part of question 7, they would then go on and answer the second part of question 7, for which there are three options, scored 2, 1, or 0. (If they answer “Yes” to the first part of question 7, this is scored 3.)
  • In question 7 if a participant has marked both “No” and “Not relevant”, this scores 0.
  • If in the other questions they mark both “Not at all” and “Not relevant”, this scores 0.


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Q. What is the time frame of the DLQI?

The questions of the DLQI have been phrased to ask patients about the QoL impact over the last one week, a duration considered to be easily and accurately recallable.

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Q. Can the DLQI be used to aid in decision-making in day-to-day clinical practice?

The DLQI can help inform decision making. Often the doctor does not have a good insight into the impact that psoriasis and other skin diseases have on an individual patient. If the doctor knew that a patient was experiencing a large impact, shown by having a high score on the DLQI, then the doctor may alter their management, perhaps being more “aggressive” with therapy, and in the primary care setting, considering referral. If a DLQI score is greater than 10, this indicated that the patient’s life is being severely affected by their skin disease.

We have published in this area:

  • Salek S, Roberts A, Finlay A Y. The practical reality of using a patient reported outcome measure in a routine dermatology clinic. Dermatology 2007; 215: 315-319.
  • Katugampola R P, Hongbo Y, Finlay A Y. Clinical management decisions are related to the impact of psoriasis on patient-rated quality of life. Br J Dermatol 2005; 152: 1256-1262.

For further elaboration on score bandings and their interpretation, please see the following publication:

  • Hongbo Y, Thomas C L, Harrison M A, Salek M S, Finlay A Y. Translating the Science of Quality of Life into Practice: What Do Dermatology Life Quality Index Scores Mean? J Invest Dermatol, 2005, 125:659-664.


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Q. What are the different subscales/dimensions of the DLQI and how do you score these?

The DLQI has been created as a single index. However, arbitrarily the 10 questions can be categorised (and analysed) under six subscales or dimensions as follows:

  • Symptoms and feelings
  • Daily activities
  • Leisure
  • Work and School
  • Personal relationships
  • Treatment

The DLQI can be analysed under the six subscales or dimensions as follows:

Symptoms and feelings Questions 1 and 2 Score maximum 6
Daily activities Questions 3 and 4 Score maximum 6
Leisure Questions 5 and 6 Score maximum 6
Work and School Question 7 Score maximum 3
Personal relationships Questions 8 and 9 Score maximum 6
Treatment Question 10 Score maximum 3

 

The scores for each of these sections can also be expressed as a percentage of either 6 or 3.

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Q. What do the DLQI scores mean?

The DLQI scores range from 0 to 30; lower scores indicate lower impairment of patient’s quality of life and higher scores indicate greater impairment of patient’s quality of life. A simple guide to show the meaning of different DLQI scores is as follows:

0-1 = no effect at all on patient’s life
2-5 = small effect on patient’s life
6-10 = moderate effect on patient’s life
11-20 = very large effect on patient’s life
21-30 = extremely large effect on patient’s life

 

Furthermore, a change in scores is considered clinically meaningful, when a patient’s DLQI scores have changed by at least 4 points from the previous reading (this figure is based on our published data).

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Q. How frequently can the DLQI be used?

The time frame of the DLQI questions is based on quality of life estimation over the last one week. This means that the DLQI can be used as frequently as required but there should be at least 7 days between each use. However, very frequent use is not recommended because of the possibility that the patient will remember and be influenced by previous answers or become less careful with answering.

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Q. What age group is the DLQI valid for?

The DLQI has been designed and validated for individuals 16 years of age and older.

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Q. How can I translate a QoL questionnaire into another language?

First check on this website that the language translation is not already available. It is necessary to seek permission from Professor Finlay or colleagues before starting to undertake a translation of a QoL questionnaire authored by them. This is to ensure that a translation into that language is not already underway and that appropriate steps are followed to ensure a validated translation process.

At the very minimum, two independent translators need to translate the measure (e.g. DLQI) from English into the alternative language. These two translators then discuss their translations and agree on a single translation in the alternate language. A third and fourth translator are then asked to independently back-translate the agreed alternate language version into English.

At this stage the back-translations need to be reviewed by the copyright holders (Prof Andrew Y Finlay and colleagues). Nearly always small problems become apparent and it is usually necessary for further changes to be made in the alternative language translation. This then needs to be validated by a further process of back-translation. Advice on this process can be gained either from Professor Finlay or colleagues. Finally the agreed translation has to be pretested in a group of potential subjects in a process called cognitive debriefing.

Cognitive debriefing:
In brief, you enrol a small number of patients (e.g. 5 to 8) representing the population that would be completing the questionnaire in future. Ask them to complete the questionnaire, note the time needed to complete, ask them about the clarity, understandability, wording of the questions, is there any question that might need changing the wording and whether the questions are easily comprehensible, or not clear enough. Ask the same about the response categories. In case the respondents raise any issues about the wording or the format of the questions, ask them their opinion on how to improve this. You have to do this for every single question, one by one.

There is no need for a control population in this process; however the target population has to be representative of the population in whom the questionnaire will be used.

Copyright statement
The original English copyright statement or a validated translation of that copyright statement must always be reproduced at the end of every translation. The copyright for any translation is retained by the original copyright holders and is not transferred or shared with any additional person or institution even though they may have been involved in the translation.
We usually require a final report describing the process before approving the final version of the translation to be used. The final agreed translation is then placed on our website for others to also use.

Summary
Steps involved in the whole process of translation and linguist validation include:

  • Preparation
  • Forward Translation
  • Reconciliation
  • Back Translation
  • Back Translation Review
  • Harmonisation
  • Pilot Testing/Cognitive Debriefing
  • Review of Cognitive Debriefing Results and Finalisation
  • Final Report


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Q. Would it be possible to change the format or design of the DLQI to adapt it to individual research studies/objectives?

It is not possible to change the current content, wording, or question sequence of the DLQI. Please remember that any change carried out to the DLQI would be considered a violation of international copyright laws.

If you would like to reformat the DLQI design to adapt it to your study needs, we would be happy to discuss this with you (please contact us). However, please note that the copyright for this will remain entirely as for the original version of the DLQI and that the copyright statement must be reproduced on the new format.
Please note also that it will be necessary for the original copyright holder to approve of the final format and it would therefore be necessary for you to let us have copies of the draft version before approval.
Please note that there should not be any pharmaceutical company identifier printed in relationship to any new formatting of the DLQI. In other words there should not be any text or symbols which might give the incorrect impression that the DLQI is in some way owned or associated with a particular pharmaceutical company.

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Q. What languages has the DLQI been translated into?

Click here to view all.

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Q. Can I adjust the language of the original English DLQI to adapt to international variability?

The original DLQI is written in British English (UK). This can be understood across the world in its current form, including the USA and other major English speaking countries. As a matter of policy, to protect the integrity of the measure, we do not want to encourage the development of multiple different English language versions of the DLQI for use in specific countries. Therefore even if a minor adjustment might be considered marginally better for local use, we would not approve such changes unless it was clear that there was a major meaning issue. There is however one word difference in the DLQI for use in the USA: the word “yard’ is substituted for “garden” in Question 3.

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Q. What are the terms and conditions for the use of the DLQI?

The DLQI may be used for routine clinical use by clinicians in order to assist the clinical consultation, evaluation and clinical decision making process. There is no need to seek specific permission for this and there is no charge for the use of the DLQI in this context. However it is a requirement that every copy of the DLQI, in whatever language, should always reprint at the end of the DLQI, the following copyright statement

© A Y Finlay, G K Khan April 1992 www.dermatology.org.uk

The above permission does not affect the requirement for seeking of permission and of possible payment when the DLQI is used for research or other purposes.

There is a small charge for the use of the DLQI (Except where the DLQI is used for routine clinical purposes). This charge in clinical research studies is based upon the total number of patients to whom the Index is administered. It is not based upon the frequency with which the questionnaires are administered to each individual patient.

These charges are always waived by the copyright holders for non-funded ‘academic’ studies and they are mainly applied to pharmaceutical companies using these Indexes in Phase II and Phase III studies. Please contact the authors concerning this. The charge per patient is as follows:

UK: £7.00
USA and rest of world: $11.50

Payment should be made upon receipt of an invoice from Cardiff University.

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Q. What is the procedure if someone wants to use the DLQI?

If you are considering using the DLQI in your routine clinical practice, you can straightaway download the instrument in any language from our website (www.dermatology.org.uk). There is no need to obtain formal permission and there is no charge.

If you are considering using the DLQI for an academic research study not funded by a commercial pharmaceutical company or an external funding source, you should write to us for formal permission for its use at: dermqol@cf.ac.uk. Once you have got the formal permission from us, then you would be allowed to download the instrument directly from our website (www.dermatology.org.uk).

If you are considering using the DLQI for a clinical study funded by an external source such as a commercial pharmaceutical company, you would need to write to us to seek formal permission. You should let us know the exact number of patients you are planning to administer the DLQI to. We will then send you a contract and an invoice for payment, and we will give you the formal permission to use the DLQI. Following this you would be allowed to download the instrument directly from our website for use in the study (www.dermatology.org.uk).

If you are an undergraduate student (for example a medical student) or a postgraduate student undertaking a higher degree, you can use the DLQI in your research project without seeking permission, provided that the project is not externally funded, for example by a pharmaceutical company. However it is a requirement that all copies of the DLQI, in any language, must reproduce the copyright statement (se above) at the end of every copy of the DLQI.

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Q. Why are there sometimes charges for using the DLQI?

For clinical use and for academic research studies, there are no charges. However, for externally funded clinical studies, a small charge is applicable. The money generated is used to support quality of life research and other related activities within the Department of Dermatology, Cardiff University.

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Q. What are the charges for the use of the DLQI?

There is no charge for the use of the DLQI for use in clinics or for academic studies. However, for studies which are funded by pharmaceutical companies the charge is currently £7.00 GB pounds sterling or US $ 11.50 per patient. Please note that for companies based within the European Union, VAT may be payable.

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Q. How to make payment for using the DLQI?

If you have decided to use the DLQI, you will need to write to Mrs. Joy Hayes (see above for contact details). Payment is upon receipt of an invoice from Cardiff University. For this purpose we will need to know the number of patients to be recruited and also the mailing address as to where our invoice should be sent.

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Q. Why is the DLQI copyrighted?

The DLQI is copyrighted:

  • To protect the integrity of the measure. Because it is copyright we have been able to refuse permission to many requests for alterations to the questionnaire. This has been essential to ensure that the DLQI score integrity has been established and is maintained worldwide.
  • To protect the integrity of the DLQI in the many language translations. By maintaining control over the DLQI we have been able to ensure that only fully validated translations are used and that they are freely available on our website.
  • To allow some income generation to support quality of life research in dermatology. In particular to support research work enhancing the usefulness and validation of the DLQI and the development of other measures.


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Q. Is the DLQI Trademarked?

The DLQI questionnaire itself is copyrighted but the term is not trademarked. When writing ‘DLQI’ (full or short version), you do not need to use the trademark or copyright symbols after it. However, the copyright statement itself, which includes the copyright symbol, should always be reproduced at the end of every DLQI questionnaire.

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Q. What are the guidelines for acknowledging copyright of the DLQI?

The DLQI is copyright world-wide and can only be reprinted with permission from the authors. The need for seeking permission is waived by the copyright holders for use of the DLQI for routine clinical purposes.

Copyright details
The DLQI is copyright under the law of England and Wales. The DLQI is also copyright in the USA:
The USA Library of Congress Registration Number: TXU 608406
Registration Date: 6 December 1993
The USA has reciprocal copyright agreements with most countries in the world thereby establishing worldwide copyright of the DLQI.

Authors
Professor A Y Finlay and Dr G K Khan
The copyright statement
© Dermatology Life Quality Index. A Y Finlay, G K Khan, April 1992 www.dermatology.org.uk. This must not be copied without the permission of the authors.

The copyright statement must always be reprinted at the end of every copy of the questionnaire in whatever language.

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Q. Who should be contacted to get permission for using the DLQI?

For general queries:

dermqol@cf.ac.uk

Other contacts:

Mrs Joy Hayes (contractual and financial aspects): HayesJ@cf.ac.uk

Professor Andrew Y Finlay: FinlayAY@cf.ac.uk

Address:

Department of Dermatology
Cardiff University School of Medicine
Heath Park, Cardiff
CF14 4XN
United Kingdom
Te: +44 (0)29 2074 2884
Fax: +44 (0) 29 2074 4321

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Q. Who is the person to contact for payment related queries?

The person responsible for looking after the payments and contractual issues is Mrs Joy Hayes. Her contact details are as follows:
e-mail: HayesJ@cf.ac.uk

Tel: +44 (0)29 2074 2884
Fax: +44 (0) 292074 4312

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Q. What resources are available to find validation data of the DLQI?

The DLQI and the translations are extensively validated. Details may be found in the publications listed below.

The original publication covers the initial validation process:

  • Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI): A simple practical measure for routine clinical use. Clinical and Experimental Dermatology 1994; 19: 210-216.

The following review article covers multiple aspects of validation data up to 2008:

  • Basra MKA, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life Quality Index 1994-2007: a comprehensive review of validation data and clinical results. Br J Dermatol. 2008; 159:997-1035.

Since 2008, there have been many further publications which address various aspects of validation of the DLQI.

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Q. Where can I find the relevant publications?

The Department of Dermatology’s website (www.dermatology.org.uk) has a list of all the publications to date related to the DLQI. Please go to the Quality of Life page of the website to access the list of these publications.

Key references:

  • Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI): a simple practical measure for routine clinical use. Clin Exp Dermatol, 1994; 19: 210-216.
  • Lewis V L, Finlay A Y. Ten years experience of the Dermatology Life Quality Index (DLQI) J Investig Dermatol Symp Proc, 2004; 9(2):169-180.
  • Hongbo Y, Thomas C L, Harrison M A, Salek M S, Finlay A Y. Translating the Science of Quality of Life into Practice: What Do Dermatology Life Quality Index Scores Mean? J Invest Dermatol, 2005; 125: 659-664.
  • Basra MKA, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life Quality Index 1994-2007: a comprehensive review of validation data and clinical results. Br J Dermatol 2008; 159: 997-1035.
  • AY Finlay. Current severe psoriasis and the Rule of Tens. Br J Dermatol 2005; 152: 861-867.

For a detailed list of references please click on the link below:

Full Reference List

Dermatology Life Quality Index, “DLQI” as the search term is the quickest way to identify very recent publications.

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Q. Could the DLQI be administered over the telephone?

In theory yes, but at present there is no validation of this approach.

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Q. Is there any computerised version of the DLQI?

Not currently available from this Department.

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Q. How does the DLQI differ from the CDLQI?

The Dermatology Life Quality Index questionnaire has been designed and validated for use in adults, i.e. patients aged 16 years and over. On the other hand, the Children’s Dermatology Life Quality Index questionnaire has been designed for use in children, i.e. patients from age 5 to age 16. Like the DLQI, it is self explanatory and can be simply handed to the patient who is asked to fill it in with the help of the child’s parent or guardian.

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Q. What is the difference between the text and cartoon version of the CDLQI?

There is no difference between the questions of either questionnaire. The cartoon CDLQI was developed to be more user friendly for younger children, though both versions are fully validated and the scores may be compared in any analysis. Which questionnaire is implemented is dependent on the researcher’s preference.

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Q. With regard to how we layout the questionnaire, without altering the questionnaire itself, would it be possible to add the numbers for scoring beside the answer choices for ease of scoring?

It is not appropriate to place the score numbers next to the answer choices. This is because all of the validation of the questionnaire has taken place without this and it could be that having the numbers present would alter the way in which the respondents answer. We do not have any validation information concerning the questionnaire with the layout including the score numbers.

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Q. In the DLQI questionnaire “Not relevant” option is available except for questions 1& 2. If this option is ticked, how do we calculate the total score? Will that interfere in the statistical analysis of a clinical study?

If patients answer “Not relevant” this question should be given a score of 0 (as for “Not at all”). It does not matter whether “Not relevant” or “Not at all” is ticked; in either case the score would be zero. The total score should still be out of 30. If “Not relevant” is ticked, this therefore does not affect the final statistical analysis.

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Q. Do you recommend patients be encouraged not to tick the option “Not relevant” but choose a specific response closest to their experience?

Under no circumstances, should respondents be guided to tick one or other option as this could lead to bias. Ideally respondents should complete the questionnaire unaided unless there is some specific confusion and they ask for help in understanding a particular question. In most research studies that have been conducted using the DLQI, most respondents did not find it difficult to complete the questionnaire unaided.

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Q. What is the minimum time interval between two administrations of the DLQI?

The absolute minimum time is of course one week, because of the questions referring to the last week. However, if the DLQI is to be used repeatedly, it is better not to use it more frequently than once monthly because of patient recall and because of the risk of inducing carelessness or lack of interest in the patient.

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Q. Can I add some questions in the DLQI?

It is completely unacceptable to add questions to the DLQI. The DLQI can only be used if the users agree to use the exact wording of the DLQI. If users wish to administer some additional questions in their study, that is up to them, but they must not include additional questions as part of the DLQI.

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Q. Is it possible to produce a “literal translation” of the measure, with no deviation from the English version?

“Literal translation” means that a translator makes a one way translation from English into the language of that version. This is not acceptable and permission will not be given for such unvalidated and non-approved translations of the DLQI to be used or published. “Literal” one-way translations nearly always contain errors and we will not allow any inaccurate translations to be published.

All translations of the DLQI must be validated through an extensive process of independent forward and backward translations, reconciliation, cognitive debriefing and final approval by the Cardiff team. This is why only the validated translations as given on our website are allowed to be reproduced (with permission).

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Q. Do I need formal permission to use the DLQI for my undergraduate or postgraduate research project?

For undergraduate (e.g. medical student) or postgraduate research projects involving the use of the DLQI, in any language version, you do not need to ask for formal permission and there will not be any charge for its use irrespective of the number of subjects. However, it is a requirement that the copyright statement (© A Y Finlay, G K Khan April 1992 www.dermatology.org.uk) must always be reproduced at the end of every copy of the DLQI questionnaire used. Please also note that for commercially funded research studies, there is a small charge as mentioned on our website (see FAQs).

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Q. Can I analyse DLQI data combined with CDLQI data?

No, it is not correct to combine DLQI and CDLQI score data. The questions in the two measures are different and the score banding meaning descriptors for the CDLQI and for the DLQI are different. DLQI and CDLQI data should be analysed and presented separately. For more information on this topic, please refer to the following letter: Finlay AY, Basra MKA, DLQI and CDLQI scores should not be combined. BJD 2012; 167: 453-4.

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Q. Do you also provide permission for using the PASI?

We did not create the PASI and therefore do not provide permission for this. However, our understanding is that the PASI is in the public domain as the original authors did not establish copyright. Therefore, there is no need or process to seek permission for its use – it is simply used.

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Q. Why is 16 the minimum suggested age for using the DLQI?

16 was an arbitrary age which in the UK is often taken as reaching adulthood. All of the validation was carried out on subjects of 16 years and over.

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Q. The severity bandings for the DLQI and CDLQI state ‘0-1= no effect on patient’s life…’ and ‘…child’s life’, respectively. Why is the phrase ‘Quality of Life’ not used instead?

The descriptor we use for describing the score bands “…on patient’s life” and “…on child’s life” is really short for “….quality of life” rather than “…life”. It would be strictly more accurate to use the longer descriptor ‘Quality of Life’. However in the context in which they are used, this meaning is usually obvious. ~ It is important to note that these descriptors are not part of the instrument itself, but are supporting information.

Our general attitude when creating these tools and their supporting documentation has been to try to be as simple and as short as possible, in order to facilitate understanding and communication.

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Q: Is there an age cut-off up to which the parent or guardian can assist in completing the CDLQI?

There is no formal cut-off age concerning assistance from the parent /guardian in completing the CDLQI. It is assumed that any child completing this form would be assisted by their parent or guardian unless the child is happy to complete it unaided. However, the age for this may vary from child to child. We ask that the form is primarily completed by the child with the assistance of the parent/guardian, in other words we expect direct involvement of the child in the form completion.

We are not aware of any specific publication addressing this topic. A major review of the total usage of the CDLQI was published in the BJD in 2013:

Salek MS, Jung S, Brincat-Ruffini LA, Macfarlane L, Lewis-Jones MS, Basra MK, Finlay AY. Clinical experience and psychometric properties of the Children’s Dermatology Life Quality Index (CDLQI), 1995-2012. Br J Dermatol


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Q: Is it possible to administer the DLQI via an electronic format?

The DLQI has been used many times in an electronic format without any problems being published or brought to our attention. However, we think it would be advantageous if there was formal evidence of identical answering in paper or e-format and so we are currently undertaking a prospective research study to demonstrate this.
In the meantime, we continue to assume that it is appropriate to deliver the DLQI in an e-format. We have recently published a review article concerning this issue and we have not found any publications that suggest that delivering quality of life measures in an e-format is not valid. The reference for this review may be found below:

Campbell N, Ali F, Finlay AY, Salek SS, Equivalence of electronic and paper-based patient-reported outcome measures, Qual Life Res, 2015 Feb 22. [Epub ahead of print]


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Q: When developing electronic formats of the DLQI or CDLQI, can patients be allowed to skip questions entirely without answering them or must the software be set up to require that patients respond to every single question?

Our current guide for use of the DLQI and CDLQI is that if patients miss out the answer to one question, the questionnaire is still valid to be scored. However if they miss two or more questions then the score is invalid. So we advise that the same guidance applies to planning any software, i.e. patients should be allowed to skip any one question, but not more than one.


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Q: Who may complete the FDLQI questionnaire?

Any family member or partner above the age of 16 of a patient suffering with any skin condition may complete the FDLQI. Persons completing the FDLQI need not be direct carers or necessarily living with the patient.


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Q: Does the same relative have to complete the FDLQI at each follow up?

Though numerous relatives may complete the questionnaire at any one point, for consistency and to avoid skewing the results, only scores from the same relative may be compared over subsequent follow ups.


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Q: Do I need the permission of the translators of the DLQI to use it?

You do not need the permission of the translators of the DLQI, as all copyright remains with the original holders. For all requests to use the DLQI, please email us at dermqol@cardiff.ac.uk


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Q: Can the CDLQI or DLQI be used outside the validated age ranges?

Though the CDLQI is validated for use in ages 4-16, and the DLQI for use in ages 16 and over, they have both previously been used in ages outside this range for ‘continuity’ purposes. Sometimes paediatric studies follow-up patients past the age of 16 and this may present a dilemma in terms of whether to continue using the CDLQI, switching to the DLQI, or using the DLQI from the start. We advise that this decision is left at the discretion of the researchers. However, should these measures be used outside the validated age ranges, data should subsequently be analysed and interpreted with the caveat that the data is not formally validated. The alternative would be to use the DLQI as soon as patients turn 17. However, this presents separate challenges as you cannot combine and analyse DLQI/CDLQI data. Therefore it is difficult to maintain the longitudinal aspect of QoL monitoring in the same way as using the same measure throughout the study.

In some circumstances it may be preferable to use a teenager-specific measure. This has the advantages of directly relevant questions for an adolescent and may allow the use of the same questionnaire over the required age range. The T-QoL (Teenage Quality of Life) questionnaire has been validated to measure the impact of skin disease on quality of life on subjects aged 12-19 years. T-QoL has 18 questions divided into three domains. Please contact the authors if you wish to use T-QoL. Details are given in:

Basra MKA, Salek MS, Fenech D, Finlay AY. Conceptualisation, development and validation of T-QoL©(Teenagers’ Quality of Life): a patient-focused measure to assess quality of life of adolescents with skin diseases. Br J Dermatol 2017 ( in press)


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Q: Is it a requirement for users of the DLQI (or any other of our quality of life measures) to share results with Cardiff University or the copyright holders?

Though formal permission is required prior to using our quality of life measures for research purposes, we do not require that results are shared with Cardiff University or the copyright holders. The quality of life data itself remains the sole property of the user.

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QOL

Further Information

For general queries, technical aspects and permission to use:

E-mail: dermqol@cf.ac.uk

Other contacts:

Mrs Joy Hayes (financial aspects):
HayesJ@cf.ac.uk

Professor Andrew Y Finlay:
FinlayAY@cf.ac.uk

Address:
Department of Dermatology
Cardiff University School of Medicine
Heath Park, Cardiff
CF14 4XN
United Kingdom
Tel: +44 (0)29 2074 2884
Fax: +44 (0)29 2074 4321

FAQs

Quality of Life FAQs

Publications

Key References
Full Reference List