Patient-Reported Outcome Measures (PROMs) to Support Adherence to Falls Prevention Clinic Recommendations: A Qualitative Study

Figures & data

Table 1 Focus Group Prompts

Why do you think we ask you to complete this questionnaire? How do you think this measure (the EQ-5D-5L) might be helpful? What are your feelings about the timing of feedback? How helpful would it be if administration of the EQ-5D-5L increased in frequency? Do you think this type of information for tracking your health status over time is useful? What do you think might happen if you do not adhere? What do you think happens if you do adhere? Would you like to be provided with comparative information of how you are doing relative to how the average population seen at the Falls Prevention Clinic is doing? Why or why not? What type of information would you need to promote your adherence to Falls Prevention Clinic recommendations? Where do you think the EQ-5D-5L could fit in to promoting your adherence?

Table 2 Baseline Demographics (n=21)

Variables	Mean (SD) or Frequency (%)	Range (Min, Max)
Age	81.1 (6.5)	66, 93
Sex		N/A
Male	5 (24.8)
Female	16 (76.2)
Height (cm)	161.1 (8.5)	146.1, 181.6
Weight (kg)	72.7 (15.3)	48.5, 109.1
Education (n=20)		N/A
High school certificate or diploma	2 (10)
Trades or professional certificate or diploma	7 (35)
Some university certificate or diploma	3 (15)
University degree	8 (40)
IADL (n=20)	8.0 (0.2)	7, 8
SPPB (12 points max)	9.8 (1.6)	7, 12
PPA (−2 to 3)*	1.2 (1.1)	−0.3, 3.4
GDS (30 points max)	1.7 (2.1)	0, 7
MMSE (30 points max)	28.9 (1.2)	26, 30
MoCA (30 points max)	26.6 (2.3)	22, 30
EQ-5L-5D score (n=18)	0.8 (0.3)	0.1, 1.0

Note: *A score of 3 indicates marked risk.

Table 3 General Themes from Focus Groups Regarding the Role of PROMs (i.e., EQ-5D-5L) to Promote Adherence to Falls Prevention Clinic Recommendations

Theme 1: Usefulness of a patient-reported outcome measure (EQ-5D-5L) to patients

Opportunity

Gaining the patient perspective

How patients are feeling

How patients’ conditions affect their daily living

Gaining self-awareness

Brining issues to the patient’s attention

For comparison

Follow up purposes

Possible trends

Development

Care pathway

Role in provider’s/physician’s decision of treatment plan

Theme 2: EQ-5D-5L administration and feedback timing

Frequency

When to receive feedback

Real-time

Patient's preference

Administration of questionnaire

Often is more helpful

Theme 3: Tracking health status over time – the relationship to adherence

Benefits

Comparison

Able to see if there are changes throughout time

To understand the treatment process

Motivation

Able to see improvements or declines

Challenges

Data presentation

Cause for confusion

Target audience

Patient vs Provider vs Research

Patients’ understanding

Interpretation of the graphical data

Reasons for decline/incline

Theme 4: Comparison of PROM data with peers

Relevance of data

Relevance to self

Performance of others not relevant

Evidence for benefits from recommendations

Already knowing their own level of adherence

Need to be similar in demographics/conditions

Usefulness of data

For Patient

For motivation

For self-awareness

Figure out why they are in a certain group

For Provider

Find and provide reason for different levels of compliance

Theme 5: Patient perspectives on promoting their own adherence

Performance

Direct feedback from the provider

Report of/asking how compliant they were

Resources

Lists

Recreation/exercise programs

Directly from provider

Ask what patients need

Knowledge

Effect of comorbidities

How it can hinder compliance

Self-reflection

Prompts to think about reasons they have not been complying

Theme 6: Potential role for the EQ-5D-5L in promoting adherence

Role in behaviour change

Not having a role

Already knowing own state of wellbeing

More important for provider

Reasons for its ability to change behaviour

Improving self-awareness

Positive reinforcement

Table 4 Illustrative Quotes for Key Themes About the Role of PROMs (i.e., EQ-5D-5L) in Promoting Adherence to Falls Prevention Clinic Recommendations

THEME 1: Usefulness of a patient-reported outcome measure (EQ-5D-5L) to patients
Higher Level Theme 1: Opportunity
Predominant theme:		Sub theme and quotes:
1. Gaining the patient's perspective		How patients are feeling “I think if you came in here for the first time, you’d want to know something about us and how we feel about our condition.” How patients’ conditions affect their daily living “For me [the questionnaire] sort of covers how you’re able to function. And you know, for that, I think it’s a nice encapsulation … whatever your condition, health condition, how you’re managing in your life … that’s an indication of whether your condition, your health is interfering with your abilities to function in the world.”
2. Gaining self-awareness		Bringing issues to the patient’s attention “There might be, some of these issues here, some of these items, that you really haven’t thought about in a while.” ” … that it’s something you might not have thought about for a while, and [think], “Oh gee, I guess that is true, so maybe I should follow-up and see my GP, because I am having more pain,” something like that. It might make you think about something you had not thought about.” “I think it’s helpful because it just makes us more self-aware, you know, I think that being self-aware when you’re older it’s very important because I live with somebody who has dementia and he’s not self-aware. And so there’s huge difference between my awareness of what’s going on and everything in his. So, yes, I think it’s important from that point of view.”
3. For comparison		Follow up purposes “Think the idea of having it filled out again later, as a follow-up could really be an indication of whether there’s been a change and whether the Falls Prevention Clinic had a role in it.” Possible trends “[The provider] can compare to what we wrote when we first came to the Falls Prevention Clinic.” “We understand it could be different tomorrow or yesterday and that we’ll be doing this each time you’re here … So you get a sense of the progress or the fluctuations of your healing process … Then I think it could be very interesting.” “I think it encourages us [to] see what’s happening, [whether] we’re improving or slipping and [if so,] it might just give us a little kick in the back in the bottom.”
Higher Level Theme 2: Development
4. Care pathway		Role in provider’s/physician’s decision of treatment plan “The patient might think that she’s having acertain problem, and it turned out it’s not that. And the doctor can redirect her to the correct treatment.” “[Providers should make recommendations] on the basis … of what [they’ve] observed in the tests that are done and also in terms of the individual’s approach to what the patient thinks.”
THEME 2: EQ-5D administration and feedback timing
Higher Level Theme 3: Frequency
5. When to receive feedback		Real-time “I just found that [it is] helpful is to have the person tell me how I respond to them on that particular day.” “We’re here personally to understand our bodies and maybe learn something and maybe together not have so many falls, but that doesn’t mean that the information we provide to the research team … isn't important. It is very important. But for me personally … you got to take it and run with it.” “I found it more helpful immediately when I was finished, and had an interview with the doctor, and I enjoyed that.” Patient's preferences “It would depend on each [person] … whether they feel that they need [to].”
6. Administration of questionnaire		Often is more helpful “I think it should be done that probably at least every three, if not two. And the reason I suggest that is because I think there may be … seasonal aspects to us. You may find you’re doing more in the summer.” “And I think [having it done often is] a good thing, because I think each week, or each month, you may be worse, or you may be better. The first week you can walk about, and then the next month you’ve fallen, or something’s happened, and you can’t do that. So yeah, I think this is very useful.”
THEME 3: Tracking health status over time – the relationship to adherence
Higher Level Theme 5: Benefits
7. Comparison	Able to see if there are changes throughout time “It’s a great visual, which is probably easier to grasp at once then if we were to compare written format.” “If it could be sent to you on a sort of brag, you’re saying two months or something, you could see how you were progressing, if you were getting better or if you were getting worse. You know, that would be excellent if it would be kind of depressing if you get [down] all of a sudden.” “So I would expect to go [up]. And then the next time, to be a little bit more improvement … That’s what I would like my graph to look like. Simple, and my expectation would be, if I come, and I am reasonably compliant, I’d progress. And hopefully, it would shame me, if I didn’t progress.” “I also think it’s a preventive measurement, if you’re getting worse, you have to mindful not to fall.” To understand the treatment process “[It would] help me understand the process that I’ve been through.”
Higher Level Theme 6: Challenges
8. Data presentation	Cause for confusion “They’ve way overcomplicated this, because I think it’s very wonderful for the professional reading it - But it’s not a terrific thing for … your regular person.” “I mean, it doesn’t make any sense when I just look at it … Unless [the provider] starts [talking about] what caused that decline.”
9. Target Audience	Patient vs Provider vs Research “I think this is more for staff, who are taking care of me, if they need to know.” “Maybe that’s okay for research … But it’s personally not for me.” “Well, you know it in your head … You know if you’re getting better or if you’re slipping … ”
Higher Level Theme 6: Patients’ understanding
10. Interpretation of the graphical data	Reasons for incline/decline “I like that idea, too, of doing this, if you find yourself improving, then it’s great. You just have to remember what you did the last time, the first month. You don’t want to say, ‘Oh, what did I say last month? Am I feeling better, or not?’ So you’d almost have to keep track of what you did, yourself, month by month.” “Well, they would just have to explain the graph at the beginning, like after five months, where are you? And after ten months, where are you? … And I think that, when I first looked at this, I said, ‘What?’”
THEME 4: Comparison of PROM data with peers
Higher Level Theme 7: Relevance of data
11. Relevance to self	Performance of others not relevant “Personally, I’m not interested in how I’m measuring up against other people. I’m interested in my own goals, of falling less, or injuring myself less, or having a better quality of life, or whatever … And so, for me, this isn’t going to help me comply.” “Not being compared, I’d just like to see that, what you were asking for, is that I want to see a steady increase, if I’m compliant in doing the exercises, I should be improving my strength and flexibility, and balance, all that kind of stuff.” Evidence for benefits from recommendations “So, you know, like what difference does it make unless the people who adhered … Definitely had an 80% chance of not falling again.” Need to be similar in demographics/conditions “It would be sometimes comparing apples to oranges, if you’re in a group, and maybe I’m a lot better off than the next person that comes in. You’re comparing two different physical aspects a lot of times, right? … Or mental. So it’s hard to say.”
Higher Level Theme 8: Usefulness of data
12. For patient	For motivation “We could get to being ashamed if we didn’t do well, it might motivate us to do more.” “If I then got feedback that I was at a different group than what I anticipated … Then I suppose that would be a point of discussion or a point of thinking for myself [about needing] to … become more or less compliant.” For self-awareness “Well, I would like to know where I’m at … because you’re not always right. Somebody has to tell you.” Figure out why they are in a certain group “I probably would change my approach to my recommendations. I would probably ask a bit more questions when I was there, as to why I was not considered in the moderate, even though I considered I was. But when I find out that I’m not, I would like to know what it is that I can help myself with.”
13. For providers	Find and provide reason for different levels of compliance “Maybe [it is useful] for the group that’s doing the study, or the clinic itself. Maybe it’s good for them to know how you’re doing, what group. But for me personally, to find out that I’m in group one, or two, or three, or four … [does not tell me much]” “It’s maybe more important for the instructor to know this and then use it in consultation with a patient about trying to find out … they should have a fairly good idea how the program is working, and if it isn’t working, why isn’t it?”
THEME 5: Patient perspectives on promoting their own adherence
Higher level theme 9: Performance
14. Direct feedback	Report of/asking how compliant they were “You know, it’d be really helpful if someone would ask, have I been compliant? No one has ever asked me that. And so I feel guilty because I haven’t been completely blind and yet no one asks me like, I guess that’s okay.”
Higher Level Theme 10: Resources
15. Lists	Recreation/exercise programs “I think maybe it would be very useful for them not only to let those people know what programs are available under their own auspices, but maybe do a compilation of what other programs may be available in the city or the region. That would be of assistance.” “Getting people on to programs, stops isolation. Isolation is probably a huge [factor] … It’s a huge.” “[We] need a training program of fitness instructors who work with seniors.”
16. Directly from provider	Ask what patients need “I think that would be a direct question that could result in this. And if we aren’t compliant, why? Do we need encouragement? Do we need different programs? Why are we not feeling well? And that’s questions we can ask ourselves because I think the whole idea is to improve our quality of life.” “I think I’d feel good if I came in and said, if I even had a list that I checked off for something, but I come in and have this discussion of how are you doing if you’re upset? How are you doing with that? Really helping this one on one discussion. If I’m saying, ‘Oh boy, I get so confused or I’m lazy or whatever,’ just to have some inspiration.”
Higher Level Theme 11: Knowledge
17. Effect of comorbidities	How it can hinder compliance “Well, I think that all these things are interconnected, like you’re depressed, because of other stress, that you cannot follow the recommendations, and all those things. So it’s just interrelated to other diseases, and your health problems. But one thing, leads to another thing.”
18. Self-reflection	Prompts to think about reasons they have not been complying “And if you had a fall, there may be a volunteer could call and say, ‘Hey, what’s happening? Are you recovering? Or how did you fall? Can you see any way to stop yourself? Have you learned anything?’ Asking those questions might be an encouragement. I just know I’ve been here three times, I sometimes would have liked to have called in and said, ‘I want to ask question’, but there didn’t seem to be resource where I can do that.”
THEME 6: Potential role for the EQ-5D-5L in promoting adherence
Higher Level Theme 12: Role in behaviour change
19. Not having a role	Already knowing own state of wellbeing “ … in my personal case, I don’t think I’d pay much attention to it because I know how I feel. You know inside how you’re feeling.” More important for provider “Well, if it helps the person that’s examining you to understand where you’re at, when you come in for your visit, then I think it’s very good.”
20. Reasons for its ability to change behaviour	Improving self-awareness “I think it improves the awareness … So you are aware of all the things around you.” “Well, it’s important to know how you’re doing. That is important. Compared to other people, it’s not that important but to [see] how you are doing, yourself [and] whether it’s helping you.” “It will make you a little more self-aware of some of these things … If you’re having more pain, if you’re having less pain, if you’re feeling more sad, or more whatever. It just makes you aware, yes.” Positive reinforcement “Well, and the reason I want to see the long-term answer sheets is, I’m curious to know whether the exercise program, that I’ve put myself through, is changing any of these answers, as the year progresses. And so that seems to me, that, that would give really good feedback to adherence … “