Frequently Asked Questions

When should I register use of ICECAP?

If you have questions about the use of ICECAP at the time of preparing a funding application then please feel free to contact us informally by email (for example, in cases where the instrument will be translated or administered in a new or novel way). 

You do not need to register use of ICECAP at the time of applying for funding and indeed we would prefer it if we received user agreements for studies which are confirmed as going ahead.  This means that we have a database only of studies which are using, or have actually used, ICECAP.  If your study has started and you have not yet registered your use of ICECAP then please complete a user agreement form and return it to us as soon as possible, entering the actual start date of the research. 

Use of the ICECAP instruments is free for non-commercial usage, but we do request that all use of these copyright protected instruments is registered and approved.

 

How should I acknowledge my use of the ICECAP measure when publishing?

If you have used the ICECAP-A, please ensure that you cite the following paper:

Al-Janabi H, Flynn T, Coast J. (2012) Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Quality of Life Research 21: 167-176 (DOI: 10.1007/s11136-011-9927-2).

If you have used ICECAP-O, please cite:

Coast J,Flynn TN, Natarajan L, Sproston K, Lewis J, Louviere JJ, Peters TJ.  Valuing the ICECAP capability index for older people.  Social Science & Medicine.  2008; 67:874-882 doi:10.1016/j.socscimed.2008.05.015

If you have used ICECAP-SCM, please cite:

Sutton E & Coast J (2013) Development of a supportive care measure for economic evaluation of end of life care using qualitative methods. Palliative Medicine. 28(2):151-157

If you have used tariff values, please also ensure that you reference the appropriate paper detailing the elicitation of those values.

In addition, you may choose to add the following text to your acknowledgements:

“Use of the ICECAP measure(s) was registered with the ICECAP developers.”

 

How should I acknowledge my use of translated ICECAP measures when publishing?

Please acknowledge both the original instrument with the relevant reference (as above) and the publication introducing the translated version of the instrument.

 

Can I add a box onto the questionnaire for patient identity and site number?

Yes, as long as this has minimal effect on the formatting of the questionnaire.

 

Can I increase the text font size on the questionnaire for use with specific population groups?

Again, this is fine, but we would recommend that the formatting is maintained as much as possible.  Please do not reduce the font size below that used in the current version.

 

Can I use the questionnaire with proxy respondents?

Further evidence is needed as to how accurately proxy respondents complete the ICECAP instruments on behalf of the patient, but there will inevitably be times when proxy completion is the only feasible option.

Please make us aware via the User Agreement Form or by email if you plan to use the questionnaire with proxy respondents and specify how you propose to alter the wording.  How the wording is altered will depend upon the identity of the proxy respondent. 

We have provided two examples of how the ICECAP questionnaires have been adapted for use with proxy respondents below.  The first example is from a study by Peter Makai and colleagues (published in Quality of Life Research) in which the ICECAP-O was used with paid care providers.  The second example is from an ERC funded project on the Evaluation of End of Life Care and involves the use of ICECAP-A with family and friends (referred to as ‘close persons’).

 

Adaptation of ICECAP-O for use with paid care providers

 faq1

Adaptation of ICECAP-A for use with close persons (family and friends)

faq2

You may also wish to provide some additional instruction to the proxy respondents, such as the text used by Makai et al (2012):

“We would like to ask you to fill out the questions below for the client/family member.  Please try to answer the questions in a manner as the client/family member would if he/she would be able to answer the questions.”

 

Can I translate the questionnaires into a different language?

We have included some translations of the ICECAP questionnaires on this website.  If there is not an existing translation for the language you require on the website, then please check with us as we may be aware of an ongoing translation.  If this is not the case, and you think that you may want to translate the questionnaire, then please consult the guidance on adapting the questionnaire as a first step.

You must register your use of the ICECAP in this way before commencing any translation of the questionnaire.  We will only agree to translations if the resulting translation is made available via this website.

 

Can I administer ICECAP via telephone?

There is currently no approved telephone script and so researchers will need to develop a script which fits the needs of their study.  Please make it clear that ICECAP will be administered via telephone when completing the User Agreement Form.  We are happy to discuss this with you and provide advice. 

 

How should I calculate scores for the measure?

Responses to the measure should be coded such that the 'top' level (full capability) takes the value '4', and the bottom level (no capability) takes the value '1'. NB this coding is the opposite of that used in instruments such as the EQ-5D (where 1 is the top level).

A tariff value for an overall state can be calculated simply by summing the values across the individual attributes. 

Below is an illustration for the ICECAP-A.

Consider, for example, the state 43211.  The tariff value would be calculated as follows:

0.222 + 0.189 + 0.084 + 0.021 – 0.003 = 0.513

1. Feeling settled and secure

Level 4

0.222

Level 3

0.191

Level 2

0.101

Level 1

-0.001

2. Love, friendship and support

Level 4

0.228

Level 3

0.189

Level 2

0.096

Level 1

-0.024

3. Being independent

Level 4

0.188

Level 3

0.156

Level 2

0.084

Level 1

0.006

4. Achievement and progress

Level 4

0.181

Level 3

0.159

Level 2

0.091

Level 1

0.021

5. Enjoyment and pleasure

Level 4

0.181

Level 3

0.154

Level 2

0.069

Level 1

-0.003

Values can be found in the files providing STATA code in both the ICECAP-A and ICECAP-O sections of the website.  References outlining the development of the values can be found in the respective ‘references’ sections.

Please note that whilst work has been undertaken to elicit values for the ICECAP-SCM (Supportive Care Measure), using best worst scaling, these values are not yet publicly available.