1 This document is a description of the procedures and policies concerning the use and supply of the LYMPHOQOL tool. It does not answer the questions:

• What is LYMPHOQOL?
• What is the purpose of LYMPHOQOL?
• How do you use LYMPHOQOL?

There are six sections to the document:

• Background
• Links
• Review
• Paper copies
• Translation
• Kidscreen

There are two versions of the questionnaire.

One is designed for the younger age group, the other for the older. Many of the questions are identical, but not all. The pairs of questions, whilst age sensitive, are designed to capture the same information.

If you wish to use a version in a different language, then arrangements must be made for the preparation of an authorised translation into that language.

Translation must be made directly from the British English language version, though reference may be made to related language versions where they are helpful to clarify any points of difficulty in the translation.

ILF is not able to prepare the translation, but must approve the method used and oversee the process.

The survey is primarily conducted through the online tool hosted at SurveyMonkey. Whilst there is a master document, the online tool is the authorised source for the valid LYMPHOQOL questions in the survey.

The purpose of the survey is to validate the LYMPHOQOL questionnaire. Any use of LYMPHOQOL outside this survey is not presently permitted.

We encourage the child/young person to complete the questionnaire through the link to SurveyMonkey. If the questionnaire is completed in a clinical setting a separate link allows multiple entries to take place.

Paper copies may be used but:-

• further work will be required to enter the same information into SurveyMonkey; and
• there is significant possibility of error being introduced during transcription.

No professional should complete the survey without the child present. We suggest that parents may help younger children. It should go without saying, but for the sake of completeness, when a patient completes the survey personally, the answers are his own; he can see what answer he is giving, but when a professional completes the online survey later without the patient present, the patient cannot validate the entries as they are transcribed into the survey.

The questionnaires in the several languages available contain the valid forms of each instruction and of each question of the survey in each language. The questions in their several forms cannot and should not be changed.

For use in real life the survey questionnaire is available in several languages via weblinks which the administrator can provide.

The weblinks we provide are:

• a link customised to default to a language other than English, eg Danish
• a single use link
• multi-use links

The single use link is the default link. It is intended for patients completing the form on their own equipment, and only allows the patient to complete the form once on any device. This type of link may be made available on social media or by email and freely distributed.

The multi-use links may be used by or in a clinic or other service provider, and have no limit on the number of times they may be used. This sort of link must not be given to patients for their own use or distributed in any other way.

A clinic may need both a single use link to make available to patients and a multi-use link for their own use. If they do they must be careful not to complete a survey for a patient if the patient will also do so, and put controls in place to prevent this possibility from happening.

All language versions are available from any weblink.

These weblinks should not be used to review the survey, as they always save data back to the server. Such invalid data has then to be identified and be removed from any analysis of the results.

The importance of care in the checks and review of translated versions cannot be over emphasised. Reviewers must adhere carefully to the instructions on the review website to prevent any intrusion of poor translation, incorrect translation and inadvertent error when the translation is uploaded.

For review, the survey is provided in a way in which it may be completed but without submitting any data to the survey.

There are review documents available which show the contents of the survey in English and a second language side by side. The review documents have been produced from the tool which uploads the scripts to the survey and is therefore identical, in that respect, to the survey.

The review website is

• the only place where we can see the English text and the translated text side by side in exactly the same way that SurveyMonkey sees it.
• where to find the link to a review copy of the survey which allows a reviewer to enter data which will not be fed back to the database.

This is the link to the reviewers' page. The page itself contains instructions as to its use. It is primarily for the translators of the documents, so that they were able to verify the content of the survey, and contains instructions on its use in English, but it may be useful for anyone else who may want to see the original English questions alongside their own language version.

The content of this page may change from time to time, for example should the interface with SurveyMonkey change or the means by which text is inserted into or extracted from it change, or it becomes possible to produce side by side versions which may be easier to read.

There is a link to the review form of the questionnaire towards the top of that page.

These links should not be distributed.

Concerning paper copies of the survey, we discourage the use of these. There are no authorised copies as Microsoft Word documents. We do not produce them. The text may be held in Word documents in various places, but none of them are approved for use, and there is no guarantee that these documents are either complete or correct. Some language versions of the survey are available in pdf. If data is collected using these, then it must be entered into the survey tool. There is no opportunity to review the entries made in the tool, so two people should work together to ensure the correct transcription of data from the paper copies.

Please note that the pdf versions do not contain a transcription of the KIDSCREEN questions which we are using alongside LYMPHOQOL. We are not authorised to use the KIDSCREEN questionnaires other than in the online tool and in their original KIDSCREEN format.

Whilst the pdf versions of LYMPHOQOL may be completed and signed electronically in Adobe Acrobat Reader DC, and KIDSCREEEN can be, there may be a copyright issue if any other version of KIDSCREEN is used even though an electronic pdf can be used as an 'online' tool.

If you intend to collect data using paper copies of the survey then you should use two forms: one for LYMPHOQOL, in its authorised form, and a different one for the KIDSCREEN questions in the LYMPHOQOL survey.

Translation to another language is encouraged. Whilst ILF is not able to prepare a translation, it will support the translation. You must agree that the copyright of any translation will belong to the ILF. ILF must approve the method used and will oversee the process.

Translations are to be made directly from the British English language version.

The copyright of the LYMPHOQOL tool and all of its authorised translations belongs to ILF.

KIDSCREEN is a validated QoL tool which has been translated into many langauages. We are using KIDSCREEN alongside LYMPHOQOL to validate the results of our survey.

Whilst we have permission to include KIDSCREEN in our online tool, we must not use paper versions other than those which have been published by KIDSCREEN.

More information about KIDSCREEN may be found here.