I'm in a bit of a pickle with a big decision concerning my work and would really appreciate some opinions. This relates to, essentially, questionnaires in health research. As I've mentioned previously, I'm making a questionnaire and I'm integrating a patient preference section where patients can choose questions that they believe are important, which has lots of advantages but some disadvantages.
Now, I have two options with this, although I suppose I can also combine the two options...
I can:

1) Have a pre-defined list of questions and they can select a number that they believe are particularly relevant to them. The adds are: It is potentially quick, simple (relatively) and keeps the instrument and what it is assessing and evaluating in context. The problems are: a finite list, items included will have ultimately have been placed there through clinicians and is it really patient preference??? (sorry, if I'm rambling - I'm thinking aloud as I write this...).

2) Have patients generate their own items. The adds are: Truly patient preference, I can really tap into the lived experience of what I'm trying to measure, it will absolutely reflect the impact of the condition on the patient and allow more 'intimate assessment and evaluation'. The problems are: potentially time consuming, I am making the assumption that patients in the advanced stage of the disease can still write with a pen, writing items for a questionnaire is a skill so it may not be pragmatic.

3) Combine the two techniques, with the option of patients generating their own items a fail safe in case the list they are presented with is not exhaustive enough. Adds: The best of both worlds. The problems are: also the worst of both worlds.

Popular research indicates that approach 1 is generally taken - I don't think it's the best way of attempting to incorporate patient preference. It's like keeping a bird in a small, restrictive cage, then moving it to a bigger one and claiming you've set it free, if you know what I mean).

I'd be interested to see what interested members think of my quandary.

Hi Walminski,

I think there are several issues here:

1. Do patient preference questionnaires already exist? There are a lot of questionnaires available in health care and it would surprise if you would not find something which you could use, or at least which could function as an example. There is a book from Bowlen (?) which consists of health care questionnaires only.

2. Developing your own questionnaire may be a PhD in itself; I am sure you are aware of problems related to validating it (like validity, reliability etc.). Most journals accept surveys only if based on a validated questionnaire.

3. Asking patients to design their own preference questionnaire it an interesting idea, however I think it may only work with a very selected group of patients (not too unwell, with plenty of time, very well educated etc.). May be an idea for a focus group, and yes, therefore time consuming.

4.I would try and keep it simple, as such the method with the list of questions, presented by you, may be best (again assuming that something similar does not exist already). Also here there may be risk of bias, due to your selection and which you will have to be able to justify.:-)

I may have got the wrong end of the stick here but anyway...

I would say that most people just won't understand what is required when making items for a questionnaire - therefore I wouldn't do that option.

How about just using a list of phrases/words (difficult when I don't know exactly your subject area) and then have a scale of not relevant to me - relevant to me. and then have an open ended "any others - please specify"

In rust and golombok's book they suggest getting the items for the questionnaire from thematic/content analysis of interviews, focus groups etc. But then I know you have done thematic analysis so maybe you've done it already!

- I can't get to my home PC today - can you leave DNS up for a little longer for me? :-)

Hi Rick, thank you for you help and suggestions. There is nothing within my field that can be considered a patient preference instrument - and it is one of the reasons why I am developing a patient preference section to my instrument. I do think that your suggestion concerning a pre-defined list of questions being best is right. If I take this route, I have already done half the work for it and it is just a matter of making sure that I have clear instructions for patients to follow and know exactly how it is going to be scored and what the score represents.
As for patients generating their own items, I agree there too. Item writing is quite a technical skill and the measurement error that may arise from having patients trying to do this could be terrible.

Thanks Rick :-)

Of course Sneaks, it's there for as long as you need it - let me know if you have any trouble.

No, you haven't got the wrong end of the stick, Sneaks. What I'm trying to do is establish and rate the impact of the disease condition I'm interested in on a patient's particular life, so precisely what is important to them - which will hopefully have real clinical value. Like you say and Rick does, having them write items is a no no.
So my reasoning now is that I've done a big descriptive phenomenological study on the lived experience of people with my condition of interest in order to generate items. So, in theory, I should have a pretty comprehensive list of every item that may be important. These have already been subjected to expert appraisal, so when I've finished making the fixed scale, I can use the remainder to form a list for patients to choose a set number from (and rate) that they believe are particularly are important to them for the patient preference but.

That sounds better, I hope?

yes sounds a lot better that way. Having an open ended question option at the end e.g. any other things that are important? may get you off the hook if you are worried about being overly prescriptive with the options.