Functional Assessments for Pre-Clinic Review - Advice please

[elliepeabody]

As some of you may recall our Patient / Carer Group is working with Commissioning and the Provider to improve our local service. One of the areas we are looking at is the Pre-Clinic Questionnaire and the Pre-Clinic Functional Assessments.

I am waiting on the Service for their review of the PCQ but in the meantime I'd be interested in your thoughts on how the functional assessments could be improved. Currently used is:
1. Demographics and effect of ill health on education, employment, hobbies, benefits received
2. Chalder Fatigue Questionnaire
3. Visual Analogue Pain Rating Scale (version on page 4 of the pdf)
4. HADS
5. Self Efficacy Scale
6. SF-36 (Q 3-12 with the distances on Q10 and 11 changed to 1/2 a mile and 100 yards)
7. EQ-5D Quality of Life. Questions on page two but only 3 ratings - no problems performing. some problems, unable to / extreme pain / anxiety / depression
8. Epworth Sleepiness Scale

The PCQ is 10 pages long so asking patients to complete both this and the functional forms is quite a task cognitively, visually and from an energy point of view. There is also some duplication of questions.

I'd like to see more on pain, possibly something on OI. Less on mood. I'm wondering if the Symptom Severity and Hierarchy Profile from the ICC (page 15) might be worth including as there is nothing on PEM other than the PCQ that asks 'what happens if you do too much?'.

Note: The PCQ asks for:
1) Name and Address, demographics
2) Brief history of illness
3) Diagnostics - CDC - Memory & Concentration, Sore Throats, Muscle & Joint Pain, Sleep patterns, Headaches
4) Other symptoms
5) What happens if you do too much
6) Activity levels + description of 'average day', 'good day'
Activity levels before illness, distance able to walk on a 'bad' day, plan and cook a meal?
7) Medication
8) Mood - any treatment for depression?
9) Past medical history
10) Your view of illness
11) What would you like us to do most?

So, I'd be very grateful for your thoughts on how the PCQ and the Functional Questionnaires could be better structured. Are there any questionnaires that you think would be more appropriate to ME & CFS and which do you think should be ditched?

Thanks

 

[hellytheelephant]

@elliepeabody It is an excellent idea to streamline your forms. Having been asked to fill in huge forms at my local pain clinic, ( only to have to repeat it all again verbally) it is a subject I feel passionate about!

3) and 4) could you have one column for physical symptoms, and one for mental symptoms with boxes to tick? (Including a space for miscellaneous.)
5) I think the wording 'do too much' is inappropriate- the problem is not that patients 'do too much' it is that they have ME!
Could be changed to:'What symptoms tell you that you have exceeded your capacity ( see scale) for
a) physical activity,
b) mental exersion and stress:

6)I would suggest using the Bruce Campbell rating scale for ME and Fibro it is easy for patients and clinicians to clearly understand what they are able/not able to do, . http://www.cfidsselfhelp.org/cfs-fibromyalgia-rating-scale.'Good day' and 'average day' is very difficult to explain and would vary according to how the patient feels when filling out the form!- The scale provides a snapshot of what the patient is able to do and how much rest they need..
'Activity level before illness'- again use the rating scale.

7)I don't see the benefit in singling out depression to have its own question- surely that will be included in medical history(?)

10) Views of illness - what does this question achieve?
11) Question could be changed to use tick boxes: 'What would be the most helpful for you ?( tick two boxes only): help with sleep, better control of pain,help with digestive problems, help with recurrent infections,managing stress better, etc'


I hope some of this is of use to you!

 

[elliepeabody]

Thanks for your thoughts @hellytheelephant. Like you I found filling in the forms a real pain, in fact the HADs one I refused to fill in - Just said 'I'm not anxious or depressed' on the bottom. It didn't help that the form was badly photo copied and the boxes kept jumping around on the page as I looked at them.

Yes I agree that the questions about symptoms could be better laid out and the wording of 'doing too much' could be improved. Thanks for the suggestion of the rating scale, that is just the sort of thing I wanted to consider.

I do think the forms are unbalanced, there is much more emphasis on mood than on say pain. The view of the illness is asking what patients think their diagnosis is - not sure why it is being asked, as it seems to be looking at beliefs. I need to cross reference with the triage criteria so that the questions asked are much more focused.

Question 11 is very important but currently unstructured and needs to reflect what can currently be offered.

The other thing to take into account is that they ask all these questions, but don't then review after the intervention by the service to see if there is an improvement on the specific functional measures. The question needs to be asked what they actually do with the information they gather. Although, the Patient / Carer group has managed to get some more detailed functional outcome measures in the latest patient survey which is progress in the right direction. I'll post up the results if I get permission.

Thanks again, these forms need some significant improvement.

 

[Valentijn]

2. Chalder Fatigue Questionnaire

This one isn't particularly useful. The comparison of present fatigue to past fatigue (when healthy) can be quite difficult to recall. And it's very repetitive in focusing on physical and cognitive fatigue, which I also find too vague in the context of ME symptoms.

4. HADS

Completely inappropriate for use in non-hospitalized patients with an untreated chronic multi-system disease. It assumes that reduced or discontinued activities are due to depression, which does not take into account physical and cognitive disability causing those reductions. The anxiety section isn't quite as bad, but still likely inappropriate.

6. SF-36 (Q 3-12 with the distances on Q10 and 11 changed to 1/2 a mile and 100 yards)

I don't think there's really anything I dislike about the SF-36. The one minor problem comes when using the "physical" and "mental health" grouping of the sub-scales. From what I recall, "mental health" includes vitality, and drags down the mental health scores. But it's rarely used like that, and the sub-scale questions themselves seem quite reasonable.

 

[elliepeabody]

@Valentijn thank you for your thoughts. Part of the problem is that it is not really clear how useful the clinical staff find the information that is gathered. My initial reaction on being presented with the forms is that the Chalder Fatigue Scale and the HADs aren't really useful. Not sure about the Epworth Sleep Scale either, although it does have the advantage of being short.

 

[taniaaust1]

I personally think all of the assessment forms which arent suitable for ME/CFS patients should be discluded eg the HADS for example as the questions are to assess mood etc but due to our ME/CFS we will be answering them in regards to that and not necessarily our moods so they just give off false results in regards to what is really going on mood wise. eg mood questions such as "I feel like as if I are slowed down" are completely unsuitable for us.

I personally think what should be done is to write a whole new functional assessment just for those who have ME/CFS rather then be using all these different unsuitable for us assessment forms which also have much cross over between them. Any mood test done should only contain questions suitable for us for this.

I believe the assessment form should consist of a very good list of ME/CFS symptoms eg such as Katrina Bernes list of based on ME/CFS studies http://wwcoco.com/cfids/bernesx.html . I think it is wrong to ask a ME/CFS person to list their symptoms esp when we have so many, me myself have around 90 and due to our memory issues even we often miss listing down some of our major ones. I end up completely overwhelmed if asked to list my symptoms so need a tick box.

I also think with this list, just simple tick boxes in front of each symptom would be good. For more info you could have a second box next to the tick box where if ticked, the person then rates the degree of problems the symptom causes on a bad day out of 10 to give an idea of the how bad the symptom can get in the individual. (those out of 10 unwellness symptom rating scores could be then all added up in the end to give a total amount to compare to in future for the individual if retested).

There could be a line left under each symptom for "give one example of how this symptom affects you" IF the patient wants to write how that symptom affects them. It would be good if functional assessments actually help the assessor understand what the patient is going through!! They too often completely miss the boat with assessments of us, Ive seen that so many times.

I think this is clinically important to know the severity of all the symptoms as instead of the assessor ending up with their own warped views on what needs symptom treating the most based on their personal views on ME, the scores will help clearly show what areas need most attention.

I personally think the Chalder Fatigue scale is quite stupid to use in assessing me (it has been used in assessing me in the past and I have trouble doing it as I struggle to remember what I was like one month ago, so I got quite annoyed with it last time I got asked to fill it out). I vary all over the place week by week all according to just how much Ive been forced to have to do that week.

How do I compare myself to last month when each week last month may of been different too and I dont remember how each week of that month was.

All i can truely say is how i feel right now, at this very moment. If asked to compare right now to last year, that is a bit easier for me to do as its easier for me to compare far longer time period rather then short rapidly changing all the time time periods.

Fatigue is only a wee part of my whole ME/CFS symptoms so it seems ridiculous to me just to do a questionaire based on it when I also have so many others hence I think we do need to get away of just focusing on a few different symptoms of this illness, its the wrong thing to do.

My worst 3 troubling ME/CFS symptoms currently is my chemical sensitivity, memory issues and POTS bad enough to keep putting me into hospital for a drip after collapses I cant get up from, so ask yourself would the assessment you are using suit someone like me.

 

[taniaaust1]

I want to give an example of how stupid some parts of the SP-36 test is for me

"
32. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?

(Circle One Number)

All of the time 1

Most of the time 2

Some of the time 3

A little of the time 4

None of the time 5 "

My answer to that would be usually "none of the time" which then just makes it sound like I dont have issues. The reason why none is I never any more even plan to go visiting friends and relatives cause im basically housebound (the only time I usually plan is xmas day). So I cant even say it usually interferes with my social activities as I rarely now have a social life to be interfered with as Ive been sick that long.

and "36. My health is excellent " asking a ME/CFS person if that question is true or false is completely ridiculous. So back to what I was saying, I deem these questionaires completely unsuitable to be being used in ME/CFS functional assessments.

surely it wouldnt be hard to formulate a new functional assessment for us..

 

[elliepeabody]

Thanks for your detailed thoughts @taniaaust1 (sorry for the delay in response, yesterday I was working on the paperwork for meeting tomorrow). I agree that tick boxes for symptoms, including severity is a good idea, which is where something like Bernes or the ICC symptom list could come in. We have to balance being comprehensive without confusing or putting off respondents.

There are I think two issues - seeing what can be done to manage symptoms, and how those symptoms affect function (with recognition of what the ICC calls 'total illness burden')

I take your points about the SF-36 although currently the service only uses Q 3-12 and not the ones about current or previous states of health.

There does need to be a functional assessment for ME - surely there must be one somewhere. Its the sort of thing that can take so long to put together. I've found a list of functional assessments that could be used - a cornucopia of assessments! http://www.nap.edu/read/19012/chapter/14