Lung Information Needs Questionnaire (LINQ)

What is it?

LINQ is a self-complete questionnaire that has measures the information needs of patients with chronic obstructive pulmonary disease (COPD). LINQ can also be used for patients with some other chronic lung diseases. It is not suitable for patients with asthma.

What is it used for?

LINQ is designed to help clinicians identify which patients would be helped by information and the type of information an individual patient needs. This questionnaire can also be used to evaluate the impact of intervention, including pulmonary rehabilitation, for research and audit purpose.

Who can use it?

The LINQ is freely available for clinical use and not-for-profit research. It can be downloaded from this site. Because it is still a ‘young’ scale, it would be helpful if researchers email us to let us know if they intend to use it, so we can update them if needed. This is, however, entirely voluntary. We welcome comments about the experience of using the scale, and any data you care to share with us.

Pulmonary Rehabilitation Programmes

We have a version of LINQ which is better for rehabilitation programmes, as the LINQ question stems are slightly altered. In the above version it asks if 'a doctor or nurse has told you...', but in the rehabilitation version it asks 'has a health professional told you....' as in rehabilitation often physios/OTs are the source of infomation.

Download the Pulmonary Rehabilitation LINQ Questionnaire here

Translations and Modifications

Modifications

The questions in the LINQ sometimes refer to information given by health professionals. The word health professional is not a common word to patients (it is to health professionals!). Therefore, we have used the words doctor or nurse as the descriptor of health professional, as this is the description we obtained from patients. We understand that some users of the scale would like to use health professional specific labels (e.g., physiotherapist). We allow common sense modifications of this nature if it is necessary for your purpose, but please be aware that patients are often very ignorant about health professionals affiliations. One cannot rely on patients to accurately know the affiliation of a health professional.

The management of COPD varies slightly between different countries. The questionnaire can be modified, following discussion with Michael Hyland (see contacts) to incorporate local self-management practice.

Translations

We allow and encourage translations, and some have already been done and will be made available on this site.

Please follow the following procedures for translations as this will help capture the original spirit of the scale, which is that it should be easy to understand by patients not health professionals!

1. You will need two bilingual people. One translates the questionnaire into the target language and the other translates it back into English (the second should not have seen the original English). Then the two translators meet and discuss discrepancies with the original English and how this can be improved.

2. The translated questionnaire is shown to a focus group of 4-8 patients. Each person completes the questionnaire. Then the moderator asks the patients to discuss each item in turn, to explore whether it is clear, and if not how it can be improved. This procedure may lead to a modification of the questionnaire. A second focus group should then be held to evaluate this modified questionnaire, and so on, until patients are satisfied with the questionnaire.