Collecting data from users

[Dr.Patient]

With respect to the symptoms in general, we would probably have to roll one symptom cluster at once for two reasons:

1. users need not to be overwhelmed by filling in too much info at once
2. we will need to define a clear scale for responses to each question that's numeric (a distinct bell type scale for each) - we might be able to recruit ME support groups to assist with that. Most obviously we need a clearly defined 'top' from very severe suffers of a symptom a 'bottom' that compares our minimum with the general population.

Phoenix probably has members semi-expert in most things to make this happen by divide and conquer.

@Dr.Patient do you have any ideas re existing academic formal scales for the purpose of tracking symptom severity across the range of symptoms?

Other than Bell's and Karnofsky, there are a few- the Edmonton symptom assessment scale which rates symptoms from 0 to 10, 10 the worst, for Limited activity, fatigue, physical discomfort, shortness of breath, pain, lack of well-being, anxiety, depression, nausea, appetite, sleep, weakness, dizziness, constipation, difficulty thinking- in palliative care.

Brief fatigue inventory and several other scales for fatigue in cancer patients.

ECOG performance scale.

Palliative performance scale.

All of them are kinda similar...

 

[Leopardtail]

Other than Bell's and Karnofsky, there are a few- the Edmonton symptom assessment scale which rates symptoms from 0 to 10, 10 the worst, for Limited activity, fatigue, physical discomfort, shortness of breath, pain, lack of well-being, anxiety, depression, nausea, appetite, sleep, weakness, dizziness, constipation, difficulty thinking- in palliative care.

Brief fatigue inventory and several other scales for fatigue in cancer patients.

ECOG performance scale.

Palliative performance scale.

All of them are kinda similar...

Do any of them (other than Bell's) concretely define what ten means, what 20 means etc?
Numbers not necessary, just fixed points (as per Bells) - where might we find details of them?

The issue of 1..10 scales without definition is they are incomparable, and even more reliable with ME patients. today's 10 can be next month's 3.

 

[Dr.Patient]

Do any of them (other than Bell's) concretely define what ten means, what 20 means etc?
Numbers not necessary, just fixed points (as per Bells) - where might we find details of them?

The issue of 1..10 scales without definition is they are incomparable, and even more reliable with ME patients. today's 10 can be next month's 3.

The ECOG and Palliative do.

0 to 10 scales are pretty good, in my opinion.

 

[Leopardtail]

The ECOG and Palliative do.

0 to 10 scales are pretty good, in my opinion.

Would you be able post details of ECOG and palliative?


my issue with undefined 1..10 scales remains:

1. while in hospital I made made to feel dreadful due to sleep deprivation - I rated my fatigue '10'.
2. Later I had my annual peak of fatigue and realised in hospital it was not 10 but '4'.
3. One persons improvement of 3 would be another persons improvement of 1 (differing severity or variation).
4. they are too open to persuasion or abuse by disreputable scientists
5. since they are ordinal scales any maths done with remains invalid by definition, hence the numbers deliver only limited value (contrasted for example with a scalar value such as TSH level).

It has to be clear what 2 means, what 5 means or we will have doctors/researchers assuming 1=normal life, where the ME patient may interpret as 'off my ventilator'.

In my opinion at least any numbers we use need to be comparable across patients, that in turn makes them comparable for the same patient over time.

If we had well established ordinal scales and high volumes of data, my hope is we might in retrospect be able to do provable maths and generate an 'interval scale'

For me its about the numbers having real meaning.

Does this make sense?

 

[optimist]

Would you be able post details of ECOG and palliative?


my issue with undefined 1..10 scales remains:

1. while in hospital I made made to feel dreadful due to sleep deprivation - I rated my fatigue '10'.
2. Later I had my annual peak of fatigue and realised in hospital it was not 10 but '4'.
3. One persons improvement of 3 would be another persons improvement of 1 (differing severity or variation).
4. they are too open to persuasion or abuse by disreputable scientists
5. since they are ordinal scales any maths done with remains invalid by definition, hence the numbers deliver only limited value (contrasted for example with a scalar value such as TSH level).

It has to be clear what 2 means, what 5 means or we will have doctors/researchers assuming 1=normal life, where the ME patient may interpret as 'off my ventilator'.

In my opinion at least any numbers we use need to be comparable across patients, that in turn makes them comparable for the same patient over time.

If we had well established ordinal scales and high volumes of data, my hope is we might in retrospect be able to do provable maths and generate an 'interval scale'

For me its about the numbers having real meaning.

Does this make sense?

Absolutely!

I am not sure what is the best way to measure fatigue, but something like the amount of the ability to read, write, speak, sit, stand, walk, run...

 

[Hip]

I always find the activity level scale used by these forums (found in the personal details page) is very easy to understand and apply:

Phoenix Rising heath level scale:

0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered

I am not sure who set this scale up (perhaps it was Cort), but it's quite good.

Then there is the Karnofsky Performance Scale (an index of disease severity):

100 Able to work. Normal; No complaints; No evidence of disease.
90 Able to work. Able to carry on normal activity; Minor symptoms.
80 Able to work. Normal activity with effort; Some symptoms.
70 Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 Disabled; dependent. Requires occasional assistance; cares for most needs.
50 Moderately disabled; dependent. Requires considerable assistance and frequent care.
40 Severely disabled; dependent. Requires special care and assistance.
30 Severely disabled. Hospitalized, death not imminent.
20 Very sick. Active supportive treatment needed.
10 Fatal processes are rapidly progressing

David Bell’s CFS Severity Scale:

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Energy Index Point Score (Dr Lerner's Fatigue Scale):

0. Bed-ridden, up to bathroom only.

1. Out of bed 30 - 60 minutes a day (sitting in chair is out of bed).

2. Out of bed sitting, standing, walking 1 - 2 hours per day.

3. Out of bed sitting, standing, walking 2 - 4 hours per day.

4. Out of bed sitting, standing, walking 4 - 6 hours per day.

5. Perform with difficulty sedentary job 40 hours a week, daily naps.

6. Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities.

7. No naps in bed. Up 7:00 a.m. to 9:00p.m. Able to work a sedentary job plus light housekeeping.

8. Full sedentary workweek, no naps, some social activities plus light exercise.

9. Same as 8 above plus exercise approximately 1/2 to 2/3 normal without excessive fatigue, awakens next morning refreshed.

10. Normal

The Eastern Cooperative Oncology Group (ECOG) scale:

0 – Asymptomatic (Fully active, able to carry on all predisease activities without restriction).

1 – Symptomatic but completely ambulatory (Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature. For example, light housework, office work).

2 – Symptomatic, <50% in bed during the day (Ambulatory and capable of all self care but unable to carry out any work activities. Up and about more than 50% of waking hours).

3 – Symptomatic, >50% in bed, but not bedbound (Capable of only limited self-care, confined to bed or chair 50% or more of waking hours).

4 – Bedbound (Completely disabled. Cannot carry on any self-care. Totally confined to bed or chair).

5 – Death

The Palliative Performance Scale (PPS) is found here.

 

[MeSci]

I always find the activity level scale used by these forums (found in the personal details page) is very easy to understand and apply:

I like the Bell Scale best out of those, especially if one can choose odd numbers between the tens. I have difficulty with the PR and some other scales, as I don't really fit in any of the categories (story of my life )

 

[Dr.Patient]

I like the Bell's scale. The best we have so far. Level 40 was "not confined to house", but now I see above that is "able to go out once or twice a week"-this is a better description.

To this, I would add 100- able to drive long distances normally. 90- able to drive about 4 or 5 hours with breaks. 80- able to drive about an hour 70- only local 5-10 miles driving 60- unable to drive, but able to ride in car for 1-2 hours, 50- unable to drive, able to ride in car only locally, about 3 or 4 times a week 40- Able to go out ( ride in car) once or twice a week 30- able to ride in car about every 2 weeks, 20-cannot ride in car, may be once a couple of months to short distances. 10-0- cannot ride at all.

Three things are major- Symptoms, Ability to leave the house, and Ability to work (which describes the cognitive levels as well). Bells covers Symptoms and Ability to work well, but doesn't cover the Ability to leave house that well. So, I made the above modifications. @Leopardtail

 

[MeSci]

I like the Bell's scale. The best we have so far. Level 40 was "not confined to house", but now I see above that is "able to go out once or twice a week"-this is a better description.

To this, I would add 100- able to drive long distances normally. 90- able to drive about 4 or 5 hours with breaks. 80- able to drive about an hour 70- only local 5-10 miles driving 60- unable to drive, but able to ride in car for 1-2 hours, 50- unable to drive, able to ride in car only locally, about 3 or 4 times a week 40- Able to go out ( ride in car) once or twice a week 30- able to ride in car about every 2 weeks, 20-cannot ride in car, may be once a couple of months to short distances. 10-0- cannot ride at all.

Three things are major- Symptoms, Ability to leave the house, and Ability to work (which describes the cognitive levels as well). Bells covers Symptoms and Ability to work well, but doesn't cover the Ability to leave house that well. So, I made the above modifications. @Leopardtail

That means I have NEVER been a 100, as I have never been able to drive long distances. My concentration has never been up to it. I always found driving mentally and physically exhausting. Yet I was very active otherwise.

Re being a passenger, I can only cope for about 10 miles before feeling sick, but am generally OK on buses unless they take corners too fast!

 

[optimist]

That means I have NEVER been a 100, as I have never been able to drive long distances. My concentration has never been up to it. I always found driving mentally and physically exhausting. Yet I was very active otherwise.

Re being a passenger, I can only cope for about 10 miles before feeling sick, but am generally OK on buses unless they take corners too fast!

If you could be very active, but not drive too much, perhaps it has something to do with your eyesight?

Before this spins off due to my last comment, I'll spin right back on again:
Another "problem" that arises is that even though the scales are very well defined, one has to make an assumption to what ones average level is. With me I can be a 3 for some days, and then a 6, and everything in between. I'm very much like a YoYo, and a very unpredictable one too

 

[Leopardtail]

I like the Bell's scale. The best we have so far. Level 40 was "not confined to house", but now I see above that is "able to go out once or twice a week"-this is a better description.

To this, I would add 100- able to drive long distances normally. 90- able to drive about 4 or 5 hours with breaks. 80- able to drive about an hour 70- only local 5-10 miles driving 60- unable to drive, but able to ride in car for 1-2 hours, 50- unable to drive, able to ride in car only locally, about 3 or 4 times a week 40- Able to go out ( ride in car) once or twice a week 30- able to ride in car about every 2 weeks, 20-cannot ride in car, may be once a couple of months to short distances. 10-0- cannot ride at all.

Three things are major- Symptoms, Ability to leave the house, and Ability to work (which describes the cognitive levels as well). Bells covers Symptoms and Ability to work well, but doesn't cover the Ability to leave house that well. So, I made the above modifications. @Leopardtail

never been able to drive due to ME but can see the sense in your modifications.

Personally, I would like to see similar scales across a range of symptoms & functions:
perhaps symptoms x10
& functions x10.

The bell scale is also thin on social interaction & housework / self-care. But it's a one-metric scale so as to be forgiven for not doing everything.

 

[Leopardtail]

If you could be very active, but not drive too much, perhaps it has something to do with your eyesight?

Before this spins off due to my last comment, I'll spin right back on again:
Another "problem" that arises is that even though the scales are very well defined, one has to make an assumption to what ones average level is. With me I can be a 3 for some days, and then a 6, and everything in between. I'm very much like a YoYo, and a very unpredictable one too

Agreed, that's an issue for all of us. I did consider asking for 'best in last month' and 'worst in last month' but thought that would turn 10 questions into twenty. I think we would be better with 'most usual or average' at this point, but am open to argument on key metrics.

 

[Valentijn]

PR Scale: 3-3.5 (10)
Karnofsky: 55 (100)
Bell: 20-50 (100)
Lerner: 2-4 (10)
ECOG: 2 (5)
PPS: 55 (100)

My problem with Bell's scale is that the descriptions at each level are internally contradictory. I'm doing about 30% of "normal" activity, but I'm certainly not bedbound or moderately symptomatic at rest. How does a bedbound person do 30% of normal activity anyhow? I'd expect that to be about 5-10%.

Lerner's scale is too vague - there is a HUGE difference between 4 hours of sitting and 4 hours of walking, but it seems to be all added together. I can sit all day, but can't stand or walk more than about an hour per day (for a couple minutes at a time, with plenty of rest between). And I'm certainly not one step below being able to work full time.

Karnofsky and PPS are okay, but too general to easily apply to ME/CFS, and without enough gradation between levels of disability due to having too many levels at the mild end. ECOG lacks sufficient distinction between levels, having only 5.

PR scale is my favorite of the bunch - it's relevant to fluctuating ME symptoms, it's clear and concise, it has consistent gaps between the levels, and it doesn't become self-contradictory by including too many different indicators of activity levels. It also covers the full range in an adequate and balanced manner - some of the other scales are too heavily tipped toward either the "dead" or "completely healthy" end, and don't adequately describe the continuum at the other end of the scale.

 

[Leopardtail]

Some Focus on 'Measures'
This discussion needs some focus, we began repeating points above and we seem to have a semi-agreed overview.
There are two ways we could measure how well people benefit from treatments:

1. how well their function (capability) improves (e,g, social function / housework / employment / travelling / etc)
2. how well their symptoms improve

I would like to know your PERSONAL nominations for the 'top-ten' things we should ask?
We can then make a combined 'top ten'.
I'll give this some thought myself over the next few days and produce a 'starter list' for discussion.

 

[MeSci]

If you could be very active, but not drive too much, perhaps it has something to do with your eyesight?

No - as I said - concentration was the problem. My eyesight was excellent.

I've been thinking more about the driver/passenger idea and there are more problems. Roads vary a lot, as do drivers, which will affect both the driving and passenger experience and tolerance/endurance.

For example, UK country roads can be very winding and bumpy. That makes being a passenger very uncomfortable, especially if the driver goes too fast round bends and/or over bumps. That can make me nauseous in under a mile.

Motorway (is that what is called a freeway in the US?) driving is also very different from town roads, as can the amount of traffic/road narrowing due to parked vehicles.

And the driving questions will be irrelevant to many as they have never driven or can't afford a car. At least in the UK! OK - they can always say 'not applicable'.

I think driving is too specific an issue to include, perhaps, although it can of course be very relevant to one's ability to do paid work.

 

[Leopardtail]

PR Scale: 3-3.5 (10)
Karnofsky: 55 (100)
Bell: 20-50 (100)
Lerner: 2-4 (10)
ECOG: 2 (5)
PPS: 55 (100)

My problem with Bell's scale is that the descriptions at each level are internally contradictory. I'm doing about 30% of "normal" activity, but I'm certainly not bedbound or moderately symptomatic at rest. How does a bedbound person do 30% of normal activity anyhow? I'd expect that to be about 5-10%.

Lerner's scale is too vague - there is a HUGE difference between 4 hours of sitting and 4 hours of walking, but it seems to be all added together. I can sit all day, but can't stand or walk more than about an hour per day (for a couple minutes at a time, with plenty of rest between). And I'm certainly not one step below being able to work full time.

Karnofsky and PPS are okay, but too general to easily apply to ME/CFS, and without enough gradation between levels of disability due to having too many levels at the mild end. ECOG lacks sufficient distinction between levels, having only 5.

PR scale is my favorite of the bunch - it's relevant to fluctuating ME symptoms, it's clear and concise, it has consistent gaps between the levels, and it doesn't become self-contradictory by including too many different indicators of activity levels. It also covers the full range in an adequate and balanced manner - some of the other scales are too heavily tipped toward either the "dead" or "completely healthy" end, and don't adequately describe the continuum at the other end of the scale.

You made some good points Valentijn

I have not seen all these scales hence I can only follow you up to a certain point but take several points from it:

1. any scale that crams multiple things into one metric (e.g. Bell) is always going to be self contra-dictary because we vary so much in strength and order of occurrence of symptoms. I doubt 'internal consistency' is possible across our widely divergent population and breadth of symptoms when using a single scale. My opinion is that's something to shoot for when when sub-groups are identified.
   
2. given my background in data analysis / database engineering I can construct a database that recognises the 'order of severity' and refines that % value once we sufficient data. That way we avoid repeating the mistakes of others by building in the adaptability.
3. Regarding the distribution of 'set points' we need either to have an even distribution of disability, or an even distribution of people between set points. Either method would provide a degree 'mathematical validity' to the scale.that would allow effective comparison. I had the same criticism of Bell in that respect.

Can we focus on the items below first (for the less academic amongst us) and work out the more academic qualities of the scale when we have clear targets?

 

[Leopardtail]

No - as I said - concentration was the problem. My eyesight was excellent.

I've been thinking more about the driver/passenger idea and there are more problems. Roads vary a lot, as do drivers, which will affect both the driving and passenger experience and tolerance/endurance.

For example, UK country roads can be very winding and bumpy. That makes being a passenger very uncomfortable, especially if the driver goes too fast round bends and/or over bumps. That can make me nauseous in under a mile.

Motorway (is that what is called a freeway in the US?) driving is also very different from town roads, as can the amount of traffic/road narrowing due to parked vehicles.

And the driving questions will be irrelevant to many as they have never driven or can't afford a car. At least in the UK! OK - they can always say 'not applicable'.

I think driving is too specific an issue to include, perhaps, although it can of course be very relevant to one's ability to do paid work.

I agree on all the points above. Driving puts continuous demand on the brain and causes mental fatigue. The nature of car seats and roads also puts significant demand on muscles, more so in passenger or rear seats that are of lower quality than drivers seats.

Perhaps a more general metric that covers forms of travel including driving might be more generally applicable?

 

[Leopardtail]

If you could be very active, but not drive too much, perhaps it has something to do with your eyesight?

Before this spins off due to my last comment, I'll spin right back on again:
Another "problem" that arises is that even though the scales are very well defined, one has to make an assumption to what ones average level is. With me I can be a 3 for some days, and then a 6, and everything in between. I'm very much like a YoYo, and a very unpredictable one too

Good point 'degree of volatilty' might be something we need a metric for. Maybe add that one when you consider the 'top ten' question below?

 

[Leopardtail]

PR Scale: 3-3.5 (10)
Karnofsky: 55 (100)
Bell: 20-50 (100)
Lerner: 2-4 (10)
ECOG: 2 (5)
PPS: 55 (100)

My problem with Bell's scale is that the descriptions at each level are internally contradictory. I'm doing about 30% of "normal" activity, but I'm certainly not bedbound or moderately symptomatic at rest. How does a bedbound person do 30% of normal activity anyhow? I'd expect that to be about 5-10%.

Lerner's scale is too vague - there is a HUGE difference between 4 hours of sitting and 4 hours of walking, but it seems to be all added together. I can sit all day, but can't stand or walk more than about an hour per day (for a couple minutes at a time, with plenty of rest between). And I'm certainly not one step below being able to work full time.

Karnofsky and PPS are okay, but too general to easily apply to ME/CFS, and without enough gradation between levels of disability due to having too many levels at the mild end. ECOG lacks sufficient distinction between levels, having only 5.

PR scale is my favorite of the bunch - it's relevant to fluctuating ME symptoms, it's clear and concise, it has consistent gaps between the levels, and it doesn't become self-contradictory by including too many different indicators of activity levels. It also covers the full range in an adequate and balanced manner - some of the other scales are too heavily tipped toward either the "dead" or "completely healthy" end, and don't adequately describe the continuum at the other end of the scale.

okay one obvious metric falls out of that:
mobility = permanently bed-bound, bed-bound more than half time, permanently wheelchair bound (not bed-bound), able to leave house less than once per week, three x per week, most days of week (short distances)
there will definitely be more options ... further ideas for options @Valentijn ??

 

[Leopardtail]

Absolutely!

I am not sure what is the best way to measure fatigue, but something like the amount of the ability to read, write, speak, sit, stand, walk, run...

I feel certain we need to split cognitive and physical, for me they definitely occur semi-independantly.
good point, bedbound, vs couch bound, vs able to stand vs able to walk (various amounts of time) might well be a useful metric on our scale.....