Frequently Asked Questions (FAQs)

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

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

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Using the DLQI
Q. What is the DLQI?
Q. How long does it take to complete the DLQI?
Q. Please can you explain the wording of Question 7?
Q. What is the time frame of the DLQI?
Q. How frequently can the DLQI be used?
Q. What is the minimum time interval between two administrations of the DLQI?
Q. What age group is the DLQI valid for?
Q. Why is 16 the minimum suggested age for using the DLQI?
Q. Can the CDLQI or DLQI be used outside the validated age ranges?
Q. Could the DLQI be administered over the telephone?
Q. Do you recommend patients be encouraged not to tick the option “Not relevant” but choose a specific response closest to their experience?

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Scoring the DLQI
Q. How is the DLQI scored?
Q. What do the DLQI scores mean?
Q. What are the different subscales/dimensions of the DLQI and how do you score these?
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. 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. 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. 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?

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Translations
Q. What languages has the DLQI been translated into?
Q. Do I need the permission of the translators of the DLQI to use it?
Q. How can I translate a QoL questionnaire into another language?
Q. Can I adjust the language of the original English DLQI to adapt to international variability?
Q. Is it possible to produce a “literal translation” of the measure, with no deviation from the English version?

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Changes to the DLQI
Q. Would it be possible to change the format or design of the DLQI to adapt it to individual research studies/objectives?
Q. Can I add some questions in the DLQI?
Q: Can we integrate Cardiff questionnaires or questions from them in the development of a new questionnaire?

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Copyright
Q. Why is the DLQI copyrighted?
Q. Is the DLQI Trademarked?
Q. What are the guidelines for acknowledging copyright of the DLQI?

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Permission to use DLQI
Q. What are the terms and conditions for the use of the DLQI?
Q. Is there any need to get permission for the use of the DLQI?
Q. What is the procedure if someone wants to use the DLQI?
Q. Who should be contacted to get permission for using the DLQI?
Q. Do I need formal permission to use the DLQI for my undergraduate or postgraduate research project?
Q: Does analysis or publication of retrospective QoL data require formal permission from Cardiff University?

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

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Licensing
Q: When applying for a license for any quality of life measure, what defines ‘Commercial Use’?
Q: Will the information regarding clinical trials or studies for which licensing is sought be protected by confidentiality?
Q: May the DLQI be used immediately after the licensing application has been submitted?
Q: Once the licensing application is completed, can we change the number of subjects at a later stage?
Q: How will I know that my licence application has been received and that the licence has been granted?

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Electronic format, apps
Q. Is an electronic format of the DLQI available and may researchers create their own version?
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?

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

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Utility values, EQ-5D
Q. Can the DLQI be used to derive utility values?
Q. When mapping the DLQI to EQ-5D utility values, what cut-off point was used for the probabilities to assign predicted utilities in a given group?
Q. How well did the algorithm mapping DLQI scores on to the EQ-5D perform in a UK subset population?
Q. Which time-trade-off (TTO) dataset was used for mapping the DLQI on to EQ-5D values?

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Publications
Q. Where can I find the relevant publications?

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Data usage
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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CDLQI
Q. How does the DLQI differ from the CDLQI?
Q. What is the difference between the text and cartoon version of the CDLQI?
Q. Is there an age cut-off up to which the parent or guardian can assist in completing the CDLQI?
Q. Can I analyse DLQI data combined with CDLQI data?

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FDLQI
Q. Who may complete the FDLQI questionnaire?
Q. Does the same relative have to complete the FDLQI at each follow up?

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

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Patients

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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Routine clinical practice

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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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 a skin disease has 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 to a specialist dermatologist. If a DLQI score is greater than 10, this indicates 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.
• Atwan A, Piguet V, Finlay AY, Francis NA, Ingram JR. Dermatology Life Quality Index (DLQI) as a psoriasis referral triage tool. Br J Dermatol. 2017 Oct;177(4):e136-e137.

For further information 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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Using the DLQI

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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 110 language versions. Its use has been described in over 2000 publications including very many multinational studies. The DLQI is the most frequently used quality of life instrument in randomised controlled trials in dermatology.


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

The absolute minimum time is one week, because the questions refer to the impact over the last week. However, if the DLQI is to be used repeatedly, we suggest that it is better not to use it more frequently than once per month. This is because of the risk of patient recall and hence bisas and because of the risk of inducing carelessness or lack of interest in the patient.


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

Sixteen is an arbitrary age which in the United Kingdom is often taken as reaching adulthood. All of the validation of the DLQI was carried out on subjects aged 16 years and over. Some of the DLQI questions may not be appropriate for use in younger subjects. The CDLQI is appropriate to use in subjects younger than 16 years.


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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 studies 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 switch from the CDLQI to using the DLQI as soon as patients are 17 years old. 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 (Teenagers’ Quality of Life Questionnaire) 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 2018; 178: 161-175.


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Q. Could the DLQI be administered over the telephone?

The DLQI has been administered over the telephone. However at present there is no validation of this approach.


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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 find it easy to complete the questionnaire unaided.



Scoring the DLQI

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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. We do not recommend expressing the score as a percentage of the maximum total of 30, because the interpretation of score bands and minimum important clinical difference is based on actual scores, not percentages.

Please Note: The scores associated with the different answers should not be printed on the DLQI itself, as this might cause responder 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. 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.

Relevant publications:

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.

Basra MK, Salek MS, Camilleri L, Sturkey R, Finlay AY. Determining the Minimal Clinically Important Difference and Responsiveness of the Dermatology Life Quality Index (DLQI): Further Data. Dermatology. 2015;230(1):27-33.


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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. 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. How do you handle missing data from DLQI?

There is a very high success rate of accurate completion of the DLQI. However, sometimes responders 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 responder 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 responder has marked both “No” and “Not relevant”, this scores 0.
  • • If in all other questions the responder marks both “Not at all” and “Not relevant”, this scores 0.


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In the DLQI questionnaire “Not relevant” option is available for all questions 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 (the same 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. 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 strictly be 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.



Translations

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Q. What languages has the DLQI been translated into?

Click here to view all.


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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 copyright holders. For all requests to use the DLQI, please email us at dermqol@cardiff.ac.uk


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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 (Professor 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.

Final report and approval
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 and Approval


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

The original DLQI is written in British English (UK). This can be understood across the world in its current form, including in 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. 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).



Changes to the DLQI

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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 content, wording, or question sequence of the DLQI. Please remember that any change carried out to the DLQI without permission 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 standard copyright statement must be reproduced on the new format.
Please note also that it will be necessary for the original copyright holder (from the Cardiff team) 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 or other body 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 or other body.


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Q. Can I add some questions in the DLQI?

It is not permitted to add questions to the DLQI (the DLQI is copyright worldwide). 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, for example in a study, that is up to them, but additional questions must not be included as part of the DLQI.


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Q: Can we integrate Cardiff questionnaires or questions from them in the development of a new questionnaire?

We do not allow any modifications to our questionnaires, including the addition or integration of new questions. Furthermore, as all of our questionnaires are copyright, questions may not be copied or used in the creation of an entirely new questionnaire. We only under very exceptional circumstances agree to any change in the wording of our questionnaires. One major reason why several QoL measures from Cardiff University are increasingly used worldwide is that they are always the same. All of their validity and score interpretations are invalidated if any changes are made.

Of course, our measures are not perfect and may not be exactly suitable for every circumstance. In this situation, researchers may wish to consider:

(1) using an unaltered Cardiff measure but also asking additional separate questions, or

(2) using another measure, or

(3) consider developing a new measure to meet their needs.



Copyright

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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. However the copyright statement must always be reproduced at the end of every copy of the DLQI, including when used 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 of the DLQI
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.cardiff.ac.uk/dermatology. 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.

By agreement, Cardiff University now owns and administers all copyright matters relating to the DLQI.



Permission to use DLQI

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The DLQI may be used for routine clinical use by patients and 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.cardiff.ac.uk/dermatology

The above permission does not affect the requirement for seeking of permission and of possible charges 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 for use 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 usually waived by the copyright holders for non-funded ‘academic’ studies. The charges are most frequently applied to with-profit companies, including pharmaceutical companies, using these Indexes in Phase II and Phase III studies and for other purposes. Please contact the authors concerning this. The charge per patient is as follows:

UK: £14
USA and rest of world: $23


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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.cardiff.ac.uk/dermatology

There is a simple method for getting formal permission for use of the DLQI. Formal permission is usually given immediately. Go to Online license form. Completion of the on-line form provides an instantaneous licence.

For any queries, technical aspects or difficulties, please e-mail E-mail : dermqol@cf.ac.uk
Address:
Dermatology Section
Institute of Infection and Immunity
Cardiff University School of Medicine
Heath Park, Cardiff
CF14 4XN
United Kingdom
Tel: +44 (0)29 2074 2884
Fax: +44 (0) 29 2074 4321


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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.cardiff.ac.uk/dermatology). 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 can apply online for a licence: go to Online license form.

Alternatively you can email us for formal permission for its use at: dermqol@cf.ac.uk. Once you have received the formal permission from us, then you can download the instrument directly from our website (www.cardiff.ac.uk/dermatology).

If you are considering using the DLQI for a clinical study organised by or funded by a with-profit company such as a pharmaceutical company, you can apply online for a licence: go to Online license form. Alternatively you can email us for formal permission for its use at: dermqol@cf.ac.uk

You should let us know the exact number of patients you are planning to administer the DLQI to. We will then send you a licence and an invoice for payment, and we will give you the formal permission to use the DLQI. Once you have received the formal permission from us, then you can download the instrument directly from our website (www.cardiff.ac.uk/dermatology).

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, provided that the project is not externally funded, for example by a pharmaceutical company. Although there is no charge for this use, it is still necessary for you to apply for a licence: go to Online license form. It is a requirement that all copies of the DLQI, in any language, must reproduce the copyright statement (see above) at the end of every copy of the DLQI.


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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

Cardiff University legal team: technologytransfer@cardiff.ac.uk

Address:

Dermatology Section
Institute of Infection and Immunity
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. Do I need formal permission to use the DLQI for my undergraduate or postgraduate research project?

We usually give permission for undergraduate (e.g. medical student) or postgraduate (e.g. MD or PhD) research projects involving the use of the DLQI. Although there is no charge it is necessary to apply for a licence online: go to Online license form.

It is a requirement that the copyright statement (© A Y Finlay, G K Khan April 1992 www.cardiff.ac.uk/dermatology¬) must always be reproduced at the end of every copy of the DLQI questionnaire used. Please note that for research studies funded by with-profit organisations, such as pharmaceutical companies, there is a charge for use (see FAQs).


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Q: Does analysis or publication of retrospective QoL data require formal permission from Cardiff University?

For all prospective studies (for example a study with a protocol that requires prior ethical permission) it is a requirement that users apply for a licence, most simply online, via our DLQI website.

If you are retrospectively analysing or publishing DLQI data that was collected as part of routine clinical care of patients, then there is no need for formal permission or licence, as we allow use of the DLQI for routine clinical purposes without a licence and without charge.

The exception to this is if the retrospective study is carried out by a commercial organisation. All commercial users require a license whereby a charge is applicable, whether the study is prospective or retrospective.

If further clarification is required, contact dermqol@cf.ac.uk.



Charges to use the DLQI

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

For routine clinical use by patients and physicians and for academic research studies, there are usually no charges. However, when used by with-profit companies, a small charge is applied. Quality of life research, administration of the quality of life measures and other related activities within Cardiff University are supported by this income.


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

For routine clinical use by patients and physicians and for academic research studies, there are usually no charges. However, when used by with-profit companies, a charge is applied. The charge is currently £14 (GB pounds sterling) or US $23 per patient/subject. This charge for use 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. Therefore during your application for a licence for use of the DLQI in a clinical study, we will need to know the number of patients to be recruited. Please note that for companies based within the UK and European Union, Value Added Tax may be payable.

The DLQI is often used for other purposes, including printed copies for distribution and being made available on websites. Please contact us directly with as much detail as possible in order for us to advise you of licensing charges, if any.


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Q. How to make payment for using the DLQI?

When you apply for a charged licence to use the DLQI, either online or by emailing us, you will need to give the contact details for the invoice to be sent to you. Payment is upon receipt of an invoice from Cardiff University.


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

Initial advice concerning payments and contractual issues is given by Mrs Joy Hayes. Her contact details are:
e-mail: HayesJ@cf.ac.uk

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

Other advice is given at: dermqol@cf.ac.uk

Licences are issued by Cardiff University: technologytransfer@cardiff.ac.uk



Licensing

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Q: When applying for a license for any quality of life measure, what defines ‘Commercial Use’?

‘Commercial Use’ is defined as any use that is conducted by a for-profit organisation. This may be for any purpose including, but not exclusive to: research, marketing or promotional work. If you require any clarification please email us directly at dermqol@cf.ac.uk


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Q: Will the information regarding clinical trials or studies for which licensing is sought be protected by confidentiality?

All data is handled confidentially by Cardiff University and is not distributed to any third party.


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Q: May the DLQI be used immediately after the licensing application has been submitted?

After the licensing application has been submitted, you will receive an automatic email confirmation and you may then start using the DLQI immediately. If payment is required, we will send an invoice to you later.


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Q: Once the licensing application is completed, can we change the number of subjects at a later stage?

You may change the number of subjects at a later date, but please note we do not offer refunds. If you need to add more subjects, a further charge may be applicable. If you do need to change the number of subjects, please email us directly.


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Q: How will I know that my licence application has been received and that the licence has been granted?

After the licensing application has been submitted, you will receive an automatic email confirmation. If you do not appear to have received it, please check your Junk email to ensure that it has not been inadvertently intercepted. If in doubt, please email us: dermqol@cf.ac.uk
.



Electronic format, apps

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Q: Is an electronic format of the DLQI available and may researchers create their own version?

We have validated an electronic DLQI App which may be of interest to patients, clinicians and researchers. The App is called ‘Psoriasis 360’ and is available free on smartphones and tablets across both iOS and Android App stores. The full reference for this paper is:

Ali, F.M., Johns, N., Finlay, A.Y., Salek, M.S. and Piguet, V. Comparison of the paper-based and electronic versions of the Dermatology Life Quality Index: evidence of equivalence. Br J Dermatol 2017, 177: 1306–1315

As far as we are aware, this App can only be used on the above-mentioned formats and is not available as a web-site and cannot be integrated with other electronic systems. Therefore if your study includes smartphones or tablets running either iOS or Android, you should be able to administer the DLQI using the ‘Psoriasis 360’ App. However, the App itself is not editable and we are unable to provide access to the backend data; patient scores would have to be recorded and analysed on an external database.

Many studies have often created their own electronic versions of the DLQI (and all of our other measures) over the years, and our study along with other major studies have shown that if only minimal modifications have been made to the format of the questionnaire, it does not need repeated formal validation. Should you be keen on developing your own electronic versions of our measures, we would be happy for you to do so, though you would need formal permission and we would have to review screenshots prior to use. Furthermore our agreement and charges would vary depending on whether your electronic version was for public use or for a specific study. Please note that the copyright statement must be reproduced either at the start or end of the electronic format. For more information please email us at: dermqol@cardiff.ac.uk.

Another relevant publication:

Campbell N, Ali F, Finlay AY, Salek SS. Equivalence of electronic and paper-based patient-reported outcome measures. Qual Life Res. 2015 Aug;24(8):1949-61


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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.



Validation of the DLQI

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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.



Utility values, EQ-5D

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Q: Can the DLQI be used to derive EQ5D and utility values?

Although the DLQI is a dermatology-specific measure, it is now possible using a mapping technique and ordinal logistic regression to generate quality adjusted life years (QALYs) from DLQI data. An extensive study was conducted at Cardiff University whereby the DLQI was shown to be reliably mapped on to EQ-5D utility values for a cohort of patients where this may be required.

For more information please refer to the following publication:
Ali FM, Kay R, Finlay AY, Piguet V, Kupfer J, Dalgard F, Salek MS. Mapping of the DLQI scores to EQ-5D utility values using ordinal logistic regression. Qual Life Res 2017; 26(11): 3025-3034.

An Excel spreadsheet is also freely available for researchers or academics who may be interested in generating utility values from DLQI data. Please email Dr Faraz Ali for a copy of this spreadsheet at: AliFM@cardiff.ac.uk


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Q: When mapping the DLQI to EQ-5D utility values, what cut-off point was used for the probabilities to assign predicted utilities in a given group?

The predicted utilities were not assigned by using cut-offs. We calculated probabilities based on the fitted ordinal logistic models for each EQ-5D domain and each outcome within that domain. Using Monte-Carlo simulation we then obtained outcomes for each subject on each domain and predicted utilities for each subject based on these outcomes.

For more information please refer to the following publication:
Ali FM, Kay R, Finlay AY, Piguet V, Kupfer J, Dalgard F, Salek MS. Mapping of the DLQI scores to EQ-5D utility values using ordinal logistic regression. Qual Life Res 2017; 26(11): 3025-3034.

An Excel spreadsheet is also freely available for researchers or academics who may be interested in generating utility values from DLQI data. Please email Dr Faraz Ali for a copy of this spreadsheet at: AliFM@cardiff.ac.uk


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Q: How well did the algorithm mapping DLQI scores on to the EQ-5D perform in a UK subset population?

The mapping algorithm was tested on a European dataset and not specifically on a UK population. Though there may be cultural variation influencing HRQoL and utility responses, we have not been able to test this specific question in detail. However, when our model was created using only Italian patients and tested on a Norway population, it performed almost as well as the model derived from the complete dataset. Our experience suggests that within the European context there is some uniformity of attitudes, cultural norms and responses, as the DLQI has undergone over one hundred validated translations, with many in continental European countries.

For more information please refer to the following publication:
Ali FM, Kay R, Finlay AY, Piguet V, Kupfer J, Dalgard F, Salek MS. Mapping of the DLQI scores to EQ-5D utility values using ordinal logistic regression. Qual Life Res 2017; 26(11): 3025-3034.

An Excel spreadsheet is also freely available for researchers or academics who may be interested in generating utility values from DLQI data. Please email Dr Faraz Ali for a copy of this spreadsheet at: AliFM@cardiff.ac.uk


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Q: Which time-trade-off (TTO) dataset was used for mapping the DLQI on to EQ-5D values?

As no official European TTO values exist for EQ-5D health states, we applied the UK TTO values throughout the validation process.



Publications

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Q. Where can I find the relevant publications?

The Department of Dermatology’s website (www.cardiff.ac.uk/dermatology) has a list of publications 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.
  • Basra MK, Salek MS, Camilleri L, Sturkey R, Finlay AY. Determining the Minimal Clinically Important Difference and Responsiveness of the Dermatology Life Quality Index (DLQI): Further Data. Dermatology. 2015;230(1):27-33.
  • Finlay AY. Quimp: a word meaning “quality of life impairment”. Acta Derm Venereol 2017; 97: 546-547.
  • Finlay AY. Broader concepts of quality of life measurement, encompassing validation. J Eur Acad Dermatol Venereol. 2017 Aug;31(8):1254-1259.
  • Ali FM, Kay R, Finlay AY, Piguet V, Kupfer J, Dalgard F, Salek MS. Mapping of the DLQI scores to EQ-5D utility values using ordinal logistic regression. Qual Life Res 2017; 26(11): 3025-3034.

For a detailed list of references from the Cardiff Dermatology Quality of Life Team please click on the link below:

Full Reference List

The quickest way to identify recent publications is to use “Dermatology Life Quality Index” or “DLQI” as the search terms on PubMed.



Data usage

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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.



CDLQI

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Q. How does the DLQI differ from the CDLQI?

The Dermatology Life Quality Index (DLQI) questionnaire has been designed and validated for use in adults, i.e. patients aged 16 years and over. In contrast, the Children’s Dermatology Life Quality Index (CDLQI) questionnaire has been designed for use in children, i.e. patients from age 4 to age 16. Like the DLQI, the CDLQI 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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The cartoon version of the CDLQI has almost the same text as the text only version. The only difference between the two formats of the questionnaires is that the cartoon version does not have ‘prevented school’ as a response item in Q7. This was removed for design reasons as the cartoon CDLQI was developed to be more user friendly for younger children. However, both versions are fully validated and the original study shows that there is no difference in how respondents answer each format, and scores may be compared in any analysis. The reference for this is:

Holme SA, Man I, Sharpe JL, Dykes PJ, Lewis‐Jones MS, Finlay AY. The Children’s Dermatology Life Quality Index: validation of the cartoon version. British Journal of Dermatology. 2003 Feb 1;148(2):285-90.

Which questionnaire (text only or text and cartoon) is implemented is dependent on the researcher’s preference.


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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 a parent or 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 is as follows:

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. 2013 Oct;169(4):734-59.


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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.



FDLQI

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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.
The person in the family who has skin disease may be of any age, i.e. not necessarily aged 16 or over.


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

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



Other measures, PASI

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

We did not create the Psoriasis Area and Severity Index (PASI) and therefore cannot provide permission for the use of PASI.

For information only, our understanding, which may or may not be correct, is that the PASI concept is in the public domain and the original authors did not establish copyright. The PASI is therefore normally used without seeking permission for its use. There is no process that we are aware of to seek permission for its use. PASI was originally described in the following article:

Fredriksson T, Pettersson U. Severe psoriasis–oral therapy with a new retinoid. Dermatologica. 1978;157(4):238-44.

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