Background
Methods
Research setting
Selection of instruments
PEI instrument overview
MYMOP instrument overview
Data collection
Data analysis
Results
Sample and respondents
Characteristic | Number |
---|---|
Gender | |
Female | 13 |
Male | 7 |
Age Bracket | |
18–34 | 5 |
35–54 | 5 |
55–64 | 3 |
65–74 | 4 |
75+ | 3 |
Ethnicity | |
Asian | 1 |
Black | 1 |
Mixed race | 1 |
White | 17 |
Number LTCs | |
No long-term conditions | 4 |
One long-term condition | 7 |
> One long-term condition | 9 |
PROM | Cognitive Process | Problem Area | Total patientsa |
---|---|---|---|
PEI (n = 20) | Compre-hension | Patient expressed uncertainly on how to interpret item | 5 |
Patient left an applicable item blank or ticked n/a | 1 | ||
Total patients with at least one problem
|
6
| ||
Recall | Scored overall improvement since start of illness, not because of doctor. | 6 | |
Difficulty keeping the score to a single appointment, within an episode of care | 6 | ||
Total patients with at least one problem
|
9
| ||
Response | Suggested same or less category should be split into two | 5 | |
Difficulty choosing between “same or less” / “not applicable” | 4 | ||
Data entry error made as a result of response scale | 5 | ||
Total patients with at least one problem
|
9
| ||
MYMOP (n = 17) | Compre-hension | Difficulty with choosing, or sticking to a single “problem” | 4 |
Symptoms misunderstood as conditions | 8 | ||
Activity misunderstood as sporting / paid work | 3 | ||
Total people with at least one problem
|
8
| ||
Recall | Difficulty averaging over a week for something that is cyclical or has changed over the week. | 3 | |
Total people with at least one problem
|
3
| ||
Response | Patient expressed confusion on how to interpret scale | 4 | |
Patient interpreted scale inconsistently between questions | 2 | ||
Total people with at least one problem
|
6
|
Patient enablement instrument
Comprehension
PEI item | Interpretation of item | Total |
---|---|---|
Able to cope with life | Not “coping” means depressed or unable to go about day to day tasks | 13 |
Improved “coping” can be any reduction in minor concern. | 5 | |
Able to understand illness | My long-term condition is not an “illness” | 3 |
My short-term condition is not an “illness” | 5 | |
I do / did have an illness when I consulted the doctor / nurse | 12 | |
Able to cope with your illness | Taking practical action to make the illness less problematic | 9 |
Includes reduction of concern even if no practical action taken | 7 | |
Able to keep yourself healthy | Refers to general diet, exercise, well-being | 7 |
Refers to the particular problem consulted for | 8 | |
Confident about your health | Increased understanding / confidence in managing condition | 7 |
Confidence in diagnosis and management plan | 3 | |
Confident that condition can be dealt with / is not serious | 7 | |
Confident that you an overall healthy person | 2 | |
Able to help yourself | Able to manage in daily life (not helpless) | 8 |
Any actions taken to improve or alleviate symptoms / condition | 11 |
“I don’t really think of my heart as an illness funny enough. It's not like suddenly it can be cured. I suppose you think your illness is something which you'll hopefully get over it. Whereas the heart, guess I'm stuck with that.” (Patient 5)
Recall process
Patient 18: “Yeah. I suppose these things are all sort of, like rather than specifically today, or yesterday … it’s as a whole I suppose.”
INT: “Yeah. Do you find it difficult to separate out yesterday because it’s a recurrent appointment?”
Patient 18: “Yeah. [INT: Yeah.] Yeah because …. I always see the same lady and it’s always about the same thing.”
Response process
INT: “As a result of your visit to the doctor two weeks ago do you feel you are able to cope with life ‘much better’, ‘better’, ‘same or less’, or ‘not applicable’?”
Patient 10: “I have a comment here. [INT: Mm.] Wouldn’t it have been better to have ‘much better’, ‘better’, ‘same’, then ‘less’?”
INT: “Mm, some people have said that.”
Patient 10: “Yes. Because it is … they’re not the same thing. And … because of that I’m going to put ‘better’ rather than ‘the same’ […] it WAS the same. You see. So I can’t … but I can’t say ‘the same’ […] because it … it might be interpreted as less. And that would make it wrong.”
Face validity
I might have ticked different boxes actually if I’d have done it straight away after my appointment. […] In that situation, I probably would have just (mimes self ticking without thought) and because they’re so almost vague and open […] I just wouldn’t have sat and focused on it. (Patient 4)
MYMOP
Comprehension process
Patient 14: “Well symptom is, is well what’s happening with you, symptom is, is, is the problem you’ve got at the, at the moment. […], you know, you’ve got a rash. You know, that’s a symptom of something, it might be a stinging nettle, might be a drug you’ve taken, but to me that’s a symptom. […] So to me the symptom is the aches, the pains. […]”
INT: “Yeah, and is there a reason you would write arthritis rather than aches and pains?”
Patient 14: “Yeah because that’s what I’ve been told. That’s what it is.”
Recall process
Patient 8: “A week is quite a long time sometimes for little conditions like this … if you’d asked me the day that it erupted and the following day, I’d have said well it stops me doing it completely. But then … after that, it … no, it sort of gradually … you know, there were times in the day when no problem whatsoever. And then now, you know, it’s just spot there and a small spot there.”
INT: “So is what you’re saying, the two doesn’t really give a fair picture […] of something that […] has gone from six […] to zero?”
Patient 8: “To zero, yes.”