Collecting data from users

[Leopardtail]

So far we have had suggestions for

Funtional metrics
mobility: 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.....
employment: fulltime, part time, a few hours etc
housework?: I can keep my house clean at all times, always clean not always tidy, tidy with only moderate-light (for me) fatigue, tidy with only my light fatigue, I need constant help
physical fatigue / endurance: walking distance, ability to hold stuff, (may overlap with mobility)
mental endurance: e.g. length of reading ability, concentration on TV, FUNCTION IN CONVERSATION (caps a mistake)
travel: ability to drive , be car passenger, manage bus journey - all by distance

PEM threshold

Symptomatic metrics
pain: @taniaaust1 - suggestions for thresholds please
OI: when sitting, when standing, when standing rapidly. not at all
driving:
bowels: degrees/consitency of constipation / diarea ?

further options for discussion anyone??

 

[Leopardtail]

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

thanks for that hip, am working through them now and producing an 'equivalence matrix' will post the spreadsheet upon completion.
does anybody have access to the SF-36 function scores?

 

[MeSci]

thanks for that hip, am working through them now and producing an 'equivalence matrix' will post the spreadsheet upon completion.
does anybody have access to the SF-36 function scores?

Does this page give the info you want? I just did an internet search for 'sf-36 functional'.

 

[Leopardtail]

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 )

yes I like that about Bell too it allows you to say close to X but not quite.

 

[Leopardtail]

Does this page give the info you want? I just did an internet search for 'sf-36 functional'.

Thanks for trying, but no it doesn't... It gives you the option to 'license' the surveys but not inspect them.

 

[MeSci]

Thanks for trying, but no it doesn't... It gives you the option to 'license' the surveys but not inspect them.

Not sure what you are looking for then. Did you scroll right down the page? Trying to paste table - not sure if it will come out right:

Table 1: Summary of Information about SF-36® Scales and Physical and Mental Component Summary Measures



Summary of Information about SF-36 Scales and Physical and Mental Component Summary Measures

Correlations Number of Definition (% observed)
Scales PCS MCS Items Levels Mean SD Reliability Cla Lowest Possible Score (Floor)c Highest Possible Score (Ceiling)c
Physical Functioning .85 .12 10 21 84.2 23.3 .93 12.3 Very limited in performing all physical activities, including bathing or dressing (0.8%) Performs all types of physical activities including the most vigorous without limitations due to health (38.8%)
Role-Physical (RP) .81 .27 4 5 80.9 34.0 .89 22.6 Problems with work or other daily activities as a result of physical health (10.3%) No problems with work or other daily activities (70.9%)
Bodily Pain .76 .28 2 11 75.2 23.7 .90 15.0 Very severe and extremely limiting pain (0.6%) No pain or limitations due to pain (31.9%)
General Health (GH) .69 .37 5 21 71.9 20.3 .81 17.6 Evaluates personal health as poor and believes it is likely to get worse (0.0%) Evaluates personal health as excellent (7.4%)
Vitality .47 .65 4 21 60.9 20.9 .86 15.6 Feels tired and worn out all of the time (0.5%) Feels full of pep and energy all of the time (1.5%)
Social Functioning .42 .67 2 9 83.3 22.7 .68 25.7 Extreme and frequent interference with normal social activities due to physical and emotional problems (0.6%) Performs normal social activities without interference due to physical or emotional problems (52.3%)
Role-Emotional (RE) .16 .78 3 4 81.3 33.0 .82 28.0 Problems with work or other daily activities as a result of emotional problems (9.6%) No problems with work or other daily activities (71.0%)
Mental Health (MH) .17 .87 5 26 74.7 18.1 .84 14.0 Feelings of nervousness and depression all of the time (0.0%) Feels peaceful, happy, and calm all of the time (0.2%)
Physical Component Summary 35 567b 50.0 10.0 .92 5.7 Limitations in self-care, physical, social, and role activities, severe bodily pain, frequent tiredness, health rated "poor" (0.0%) No physical limitations, disabilities, or decrements in well-being, high energy level, health rated "excellent" (0.0%)
Mental Component Summary 35 493b 50.0 10.0 .88 6.3 Frequent psychological distress, social and role disability due to emotional problems, health rated "poor" (0.0%) Frequent positive affect, absence of psychological distress and limitations in usual social/role activities due to emotional problems, health rated "excellent" (0.0%)
Note. From Ware, Kosinski, and Keller (1994).
aCI=95% confidence interval
b Numberof levels observed at baseline; scores rounded to the first decimal place (n=2,474).
cPercentage observed comes from general U.S. population sample.
d Scores for eight scales are the percentage of the total possible score achieved for each of these scales. Scores for PCS and MCS are T-scores.

EDIT - no, it didn't! But it gives you an idea, perhaps.

 

[Leopardtail]

Not sure what you are looking for then. Did you scroll right down the page? Trying to paste table - not sure if it will come out right:

Table 1: Summary of Information about SF-36® Scales and Physical and Mental Component Summary Measures



Summary of Information about SF-36 Scales and Physical and Mental Component Summary Measures

Correlations Number of Definition (% observed)
Scales PCS MCS Items Levels Mean SD Reliability Cla Lowest Possible Score (Floor)c Highest Possible Score (Ceiling)c
Physical Functioning .85 .12 10 21 84.2 23.3 .93 12.3 Very limited in performing all physical activities, including bathing or dressing (0.8%) Performs all types of physical activities including the most vigorous without limitations due to health (38.8%)
Role-Physical (RP) .81 .27 4 5 80.9 34.0 .89 22.6 Problems with work or other daily activities as a result of physical health (10.3%) No problems with work or other daily activities (70.9%)
Bodily Pain .76 .28 2 11 75.2 23.7 .90 15.0 Very severe and extremely limiting pain (0.6%) No pain or limitations due to pain (31.9%)
General Health (GH) .69 .37 5 21 71.9 20.3 .81 17.6 Evaluates personal health as poor and believes it is likely to get worse (0.0%) Evaluates personal health as excellent (7.4%)
Vitality .47 .65 4 21 60.9 20.9 .86 15.6 Feels tired and worn out all of the time (0.5%) Feels full of pep and energy all of the time (1.5%)
Social Functioning .42 .67 2 9 83.3 22.7 .68 25.7 Extreme and frequent interference with normal social activities due to physical and emotional problems (0.6%) Performs normal social activities without interference due to physical or emotional problems (52.3%)
Role-Emotional (RE) .16 .78 3 4 81.3 33.0 .82 28.0 Problems with work or other daily activities as a result of emotional problems (9.6%) No problems with work or other daily activities (71.0%)
Mental Health (MH) .17 .87 5 26 74.7 18.1 .84 14.0 Feelings of nervousness and depression all of the time (0.0%) Feels peaceful, happy, and calm all of the time (0.2%)
Physical Component Summary 35 567b 50.0 10.0 .92 5.7 Limitations in self-care, physical, social, and role activities, severe bodily pain, frequent tiredness, health rated "poor" (0.0%) No physical limitations, disabilities, or decrements in well-being, high energy level, health rated "excellent" (0.0%)
Mental Component Summary 35 493b 50.0 10.0 .88 6.3 Frequent psychological distress, social and role disability due to emotional problems, health rated "poor" (0.0%) Frequent positive affect, absence of psychological distress and limitations in usual social/role activities due to emotional problems, health rated "excellent" (0.0%)
Note. From Ware, Kosinski, and Keller (1994).
aCI=95% confidence interval
b Numberof levels observed at baseline; scores rounded to the first decimal place (n=2,474).
cPercentage observed comes from general U.S. population sample.
d Scores for eight scales are the percentage of the total possible score achieved for each of these scales. Scores for PCS and MCS are T-scores.

EDIT - no, it didn't! But it gives you an idea, perhaps.

what we are seeing there is the report produced for each separate scale, but not the questions/metrics answered by the respondents,. What I was hoping somebody might have access to is the full manual giving details we might make use of in discussion. (e.g., with physical or cognitive function).

My feeling is that what we are seeing there is vague compared to bell etc....

e.g. half the working population claim to be 'tired and worn out all the time' when having a good whinge.....

 

[Leopardtail]

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?

good point @Valentijn sitting/walking/standing are very different ability levels

 

[MeSci]

what we are seeing there is the report produced for each separate scale, but not the questions/metrics answered by the respondents,. What I was hoping somebody might have access to is the full manual giving details we might make use of in discussion. (e.g., with physical or cognitive function).

My feeling is that what we are seeing there is vague compared to bell etc....

e.g. half the working population claim to be 'tired and worn out all the time' when having a good whinge.....

This then? You can download both the form and the manual there.

I just searched for 'sf-36 that time!

 

[Leopardtail]

thanks for that

the manual is charged (refers to the other site) but the first 10 questions can de downloaded,....

 

[Dr.Patient]

The Symptoms (fatigue, headache, pain, OI, photophobia, etc) the ability to Leave the house ( includes self care - bedridden (cannot care for self) homebound (can do self care) once a week, once a month, ability to drive), and ability to Work ( includes concentration - brain fog, or can do self care, ) light cleaning in home, deskwork, outside work...

All these fall into discrete chunks, with at least a 10% difference in the steps. The comparison SHOULD be between a healthy person or with our previous healthy functionality ( many of us had a normal life, full time work, fit, vacationing, etc) this will be a 100. Since we want to be back where we belonged, the society wants us to be there, and disability wants us there, we should aim for NOTHING LESS. There are people who have been suffering for decades and probably can't remember what healthy was like, they still have to be placed in the 20 or 30 categories.

@Leopardtail , with your database experience and my medical knowledge, and both of us suffering with this illness, perhaps we can work together to come up with a more universal scale. You can converse with me and we will discuss each step several times to give it adequate characteristics.

 

[MeSci]

The Symptoms (fatigue, headache, pain, OI, photophobia, etc) the ability to Leave the house ( includes self care - bedridden (cannot care for self) homebound (can do self care) once a week, once a month, ability to drive), and ability to Work ( includes concentration - brain fog, or can do self care, ) light cleaning in home, deskwork, outside work...

All these fall into discrete chunks, with at least a 10% difference in the steps. The comparison SHOULD be between a healthy person or with our previous healthy functionality ( many of us had a normal life, full time work, fit, vacationing, etc) this will be a 100. Since we want to be back where we belonged, the society wants us to be there, and disability wants us there, we should aim for NOTHING LESS. There are people who have been suffering for decades and probably can't remember what healthy was like, they still have to be placed in the 20 or 30 categories.

@Leopardtail , with your database experience and my medical knowledge, and both of us suffering with this illness, perhaps we can work together to come up with a more universal scale. You can converse with me and we will discuss each step several times to give it adequate characteristics.

Re many/most activities, we may be able to do some but not all on a given day or in a given week. So maybe we can do an hour's light cleaning but then not be able to prepare our meals or have a shower. Or be able to walk the dog but then not be able to do any gardening or shopping. Get ourselves dressed but then not be able to walk downstairs. Etc. This needs to be taken into account.

 

[Leopardtail]

I agree for the most part with what you say. The scale must start with the health of a fully it person who looks after theirself well and progress from there and that needs to be the top score. Personally, I have never experienced 'truly normal health' hence can only observe what others were capable of.

We must however not forget that at the bed-bound end of the scale the difference between 2% and 8% function is a fourfold (400%) improvement that needs to be 'detectable', whereas the diff between 100% and 92% is statistically insignificant.

That said, yes there needs to be clear difference between adjacent options that are clearly meaningful to researchers/medics but also to members. The varying responses show the 'severe weighted' mean more to the severely affected. My suspicion is that we will eventually need some distribution that bases more on %population affected than %disability or we risk like so much research biasing against the severely affected..

Are you available to talk on skype?

 

[MeSci]

I agree for the most part with what you say. The scale must start with the health of a fully it person who looks after theirself well and progress from there and that needs to be the top score. Personally, I have never experienced 'truly normal health' hence can only observe what others were capable of.

We must however not forget that at the bed-bound end of the scale the difference between 2% and 8% function is a fourfold (400%) improvement that needs to be 'detectable', whereas the diff between 100% and 92% is statistically insignificant.

That said, yes there needs to be clear difference between adjacent options that are clearly meaningful to researchers/medics but also to members. The varying responses show the 'severe weighted' mean more to the severely affected. My suspicion is that we will eventually need some distribution that bases more on %population affected than %disability or we risk like so much research biasing against the severely affected..

Are you available to talk on skype?

Who are you asking?

 

[Leopardtail]

Re many/most activities, we may be able to do some but not all on a given day or in a given week. So maybe we can do an hour's light cleaning but then not be able to prepare our meals or have a shower. Or be able to walk the dog but then not be able to do any gardening or shopping. Get ourselves dressed but then not be able to walk downstairs. Etc. This needs to be taken into account.

It had occurred to me, but a good point well made.

In practice we will need to design questions very carefully to allow for such issues. We need to think in terms of total available energy and in terms of stamina rather than single ability. I actually describe ME as 'a disease which gives your mind, your body, and every system from immune & hormones to bowels in your body very little stamina'. Talking about symptoms only if asked for more info.

In practice we will probably try and 'do some stats' to work out total function. I will design this so weightings etc can remodelled in retrospect once we've learnt from experience and the data preserved. I will also build in flexibility so that those 'in between values' ala Bell remain possible. This issue of total vs separate function will be hard work though and need 'the minds and experience of many'.

Do you think it might work to ask people to first rank tasks, then ask questions in rank order? Asking 'when you have already completed the previous task, how often can you also.........
Possibly we could also ask how many days would you need ta achieve all items in this group at least once?

 

[Leopardtail]

Who are you asking?

Doctor.Patient asked to speak to me, but the offer is open to all who are interested and feel it would help.....

 

[Dr.Patient]

Re many/most activities, we may be able to do some but not all on a given day or in a given week. So maybe we can do an hour's light cleaning but then not be able to prepare our meals or have a shower. Or be able to walk the dog but then not be able to do any gardening or shopping. Get ourselves dressed but then not be able to walk downstairs. Etc. This needs to be taken into account.

This definitely needs to be and will be taken into account, thank you very much!

 

[Leopardtail]

I produced this ages ago 'ad' hoc' to assess treatments, perhaps it might have some value
It's all pretty basic but might be food for thought...

Self Assessment Scale to Determine Severity of ME

SCALE BOWELS
BW100 As 90 with Sensation of empty bowel
BW90 Healthy poo, chocolate coloured, thick salami-shaped. Not clearing bowels
BW80 Small amounts too frequently, good consistency, bowels not clear - When compared with BW#50 not a strong sense of being constipated

BW60 Hard pellet first then smooth


BW50 Constipated, Soft stringy small amount - When compared with BW#80, very strong sensation of being constipated

BW20 Very soft & urgent almost like diarrhoea.

BW15 Tiny amount hard pellets, possibly floating

BW10 True diarrhoea

BW0 Not gone for day or more, blocked by dry poo.



Sleep Scale
SL 0% Completely unable to get to sleep
SL x Unable to get to sleep at night then either woke as normal feeling unrefreshed, or overslept in morning.
SL x Cannot get comfortable due to severe pain waking
SL x Cannot sleep well due to mild pain causing me to wake in order to change position.

SL x Quality of sleep badly affected.

SL x Able to get to sleep but sleeping too short a time.

100% Fully refreshing sleep and of sufficient length.



EFFECTIVENESS SCALE


0% Complete exhaustion, most of day sleeping

10% Able to do one basic chore per day if alone (ie no other person interrupting, disrupting or interfering.
20% add one hour of EFFECTIVE reading (what does effective reading mean here as compared with below perhaps with comprehension), or computer programming to above.

30% add ability to keep contact with acquaintances, and simulate a day of work without real pressure of work.
40% Add one day of real work every week
50% Retain info when reading. Maintain friendships.
60% Able to do basic chores despite dad being here.
70% Some reliable cooking, able to approach strangers with calm confidence.

80% Cooking regularly; Full time work; active social life; No burnt pans, burnt food or broken crockery. No dead plants, Able to cope with occasional pressure at work, have girlfriend or close friendships.



DIABETIC SELF ASSESSMENT scale/ Also part of mental scale.
0% Dangerously rapid downward trend at any time of day (or at night) that cannot be explained by human error or circumstances
10% Strong explainable downward trend.

?? Persistent high or low blood sugars despite intervention.

30% Long acting insulin regime has stable effect

70% Blood sugars stable across mealtimes above 10

??% Hypo (mild) isolated

??% Hypo (harsh) isolated


80% Blood sugars stable between meals but slightly to high (8-11)

90% Blood sugars stable and in correct range (6-9)

100% Blood sugars stable and in ideal range (4-7)


Taking long acting insulin reliably.

Taking regular blood sugars.

MOOD SCALE
0% Life seems pointless
5% Rage, Despair, troubles seem endless
10% Mood dominated by hurt, anger

15% Irritable & lack concentration

XX% Where does wanting tp be alone fit on this scale?

20% Feeling insecure
40% Seeing lighter side

60% Able to cope with mild conflict

80% Laughing more than 4 days per week

100% Happy & Content despite troubles not worrisome


Smiling (with what frequency?)
Laughing with true prompt (e.g. comedic film/joke)
Laughing just because (e.g. life’s silliness, truly having a sense of humour)


PHYSICAL FATIGUE Self Assessment scale
0% Bedbound
10% Wheelchair bound or Housebound most of day

Major difficulty getting up steps
+ difficulty with light weights
+ unable to open milk bottle top

Moderate weight (kg ) in short bursts (total 1hrs/day or less)

Moderate weight sustained (how long in one burst?) for total work period of 4hrs/day. Lifting intermittent during that person.

Significant weight (e.g. Stone flag) ONCE in day

 

[Leopardtail]

I think I also have a copy of the Athens sleep scale somewhere, I we might be able to take inspiration from that..

 

[Leopardtail]

Sleep added.

Please not this is a basic for improvement, the options need to be discussed and worked on, added to most likely, and 'perfect health' needs adding to all... These are just points I have picked up from the discussions across threads.....

So far we have had suggestions for
Funtional metrics
mobility: 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.....
employment: fulltime, part time, a few hours etc
housework?: I can keep my house clean at all times, always clean not always tidy, tidy with only moderate-light (for me) fatigue, tidy with only my light fatigue, I need constant help
physical fatigue / endurance: walking distance, ability to hold stuff, (may overlap with mobility)
mental endurance: e.g. length of reading ability, concentration on TV, FUNCTION IN CONVERSATION (caps a mistake)
travel: ability to drive , be car passenger, manage bus journey - all by distance

This point taken from MeSci above, I assume this means in one burst as opposed daily total?
PEM threshold: I can be active for this period without causing PEM: 15mins or less than , 30mins or less, total 1 hour

Symptomatic metrics
pain: @taniaaust1 - suggestions for thresholds please
OI: when sitting, when standing, when standing rapidly. not at all
driving:
bowels: degrees/consitency of constipation / diarea ?
sleep: (fully refreshing sleep in one nightime burst, oversleeping with many hours at night and many bursts over an hour per day, highly volatile sleep, weaily awoken... less than 4 ours sleep...

further options for discussion anyone??