Qualitative feedback was captured from participants living with psoriatic arthritis (PsA) and ankylosing spondylitis (AS) regarding patient-reported outcome measures (PROMs) typically utilized in these disease states |
Concepts identified by both PsA and AS participants that best reflected their experiences included fatigue, isolation, depression, inter-personal relationships, and sexual intimacy. Additionally, elements incorporated into existing PROMs, namely pain, physical function, ability to perform activities of daily living, and stiffness, were also identified as important to participants. A few qualitative differences were noted based on disease state |
Based on participants’ feedback, it was felt that PROMs should be more deeply embedded in routine clinical care, thereby facilitating greater shared decision-making with healthcare providers. Isolation, depression, fatigue, and relationships with others were identified as critical concepts to include to better understand participants’ experiences living with PsA and AS |
Digital Features
Introduction
Methods
Patient Selection
Compliance with Ethics Guidelines
Research Engagement Tasks
Review type | Psoriatic arthritis PERC | Ankylosing spondylitis PERC | ||
---|---|---|---|---|
In person | Teleconferences | In person | Teleconferences | |
Participants | 12 | 5 and 7 per call date | 12 | 6 and 5 per call date |
PROM reviewed | HAQ-DI PROMIS-29 RAPID3 SF-36 | PsAID-9 PsAID-12 | ASQoL PROMIS-29 SF-36 | BASDAI HAQ-S PROMIS-29 |
Introduction to PROM presentation | 20–30 min led by SDC | Participants asked to review PROM prior to teleconference | 20–30 min led by SDC | Participants asked to review PROM prior to teleconference |
Independent and group PROM review/discussions* | Led by MLP | Call facilitated by SDC and JA | Led by MLP | Call facilitated by SDC and JA |
PROM review/discussions | 90 min including independent review followed by small group discussions | 45–50-min discussion with a 30-min independent pre-read of the PROM prior to teleconference | 60 min including independent review followed by small group discussions | 45–50-min discussion with a 30-min independent pre-read of the PROM prior to teleconference |
Total time allocated | 120 min | 60 min | 90 min | 60 min |
Psoriatic arthritis | Ankylosing spondylitis |
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Please have your group consider what PROM questions resonated or reflected your experiences living with PsA. What items “missed the mark”? What have the authors overlooked or forgotten to measure as it relates to PsA? Or in other words, what might be a limitation to using these scales with people living with PsA? Do these 4 PROMs meet your group’s expectations as to what a patient-centric research study should include, either now or in the future? If you could design the ideal patient-reported outcome tool, what would it look like or include/ask about? What aspects of living with PsA would you want reflected (or asked about) in the tool? If this “idea” tool provided you with a score, say, overall a measure of improvement in a person’s health because of treatment—or the PROM data showed that people were doing well would the data help you decide which treatment you might select for your PsA? | Please have your group consider what PROM questions resonated or reflected your experiences living with AS What might be a limitation to using these scales with people living with AS? Which one or two of these PROMs would you expect (or recommend) be included in an AS research study? Do these 3 PROMs meet your group’s expectations as to what a patient-centric research study should include, either now or in the future? If you could design the ideal patient-reported outcome tool, what would it look like or include/ask about? What aspects of living with AS would you want reflected (or asked about) in the tool? If this “ideal” tool provided you with a score, say, overall a measure of improvement in a person’s health because of treatment—or the PROM data showed that people were doing well would the data help you decide which treatment you might select for your AS? |
Results
Patient Characteristics
PsA PERC (N = 12) | AS PERC (N = 12) | |
---|---|---|
Gender | ||
Female | 10 | 6 |
Male | 2 | 6 |
Age range | ||
25–34 years | 3 | 3 |
35–44 years | 2 | 5 |
45–54 years | 4 | 3 |
55 and over | 3 | 1 |
Race/ethnicity | ||
White/Caucasian | 7 | 7 |
Black/African-American | 1 | 2 |
Hispanic/Latino | 2 | 0 |
Asian | 2 | 1 |
Other | 0 | 2 |
Years before diagnosis (patient reported) | ||
Less than 1 year | 3 | 7 |
2–10 years | 5 | 1 |
10 or more years | 4 | 4 |
PsA
Theme: Mental Health, Relationships, and Employment
Theme: Depression, Isolation, and Fear
“Every question [PsAID] hits the spot…Depression. Sometimes I do feel depressed and it’s usually leading a week before my treatment.” Female participant“Because both the social participation and the depression are vitally important for me…social participation and depression go hand in hand. A lot of it comes back to…fatigue. Because when I'm over-fatigued, then my social participation drops, and when my social participation drops, then my level of depression goes up. And those things are kind of important to me when speaking with my doctor.” Male participant“For me it’s the embarrassment and shame, is a huge one, and I scaled that really high…the embarrassment and shame part is something that personally affects me on a daily basis…if I know it's going to be a hot day and I know that I’m either going to be very conspicuous in hiding my skin or I’m going to be in a very public place where I'm going to be kind of limping because I’ve had really flare in my hips I will choose to be reclusive…and affects my depression and my social participation.” Female participant“I loved both of them [PsAID-9 and PsAID-12]. The thing that really struck me was the question about fear. I guess since I’m 57…I often think of my future and I have a lot of fear about aging with this disease.” Male participant“I don’t think enough people talk about how that [PsA] affects their sex lives and how that being affected could really affect someone—like I said marriage or depression level or confidence or so on…” Female participant
Theme: Fatigue
“It [PsAID-9 and PsAID-12] touched on everything and it touched on the things the doctor usually doesn’t ask and when I go in there I forget. It was really nice to have all that different stuff on there. The sleep problems. The function. Leisure activities. It makes you feel like it’s all important.” Female participant“The fatigue is what kills me because I can work through pain, I can take something to help dull the pain, but there’s nothing I can take to get my energy back…” Male participant“You can get rid of pain or you can get it where you can bear it or you can function, but that fatigue is just—to me, what I always say is it’s like walking through quicksand with an elephant on my back.” Female participant
Theme: Depth of Feedback
“If you need brevity, the PsAID-12 and 9 are great…then [comparing to the PROMIS-29] also how much the tiredness prevented you from accomplishing things, so just a little more detailed, and a little more insight with the PROMIS which is good.” Male participant“Addressed the whole person” PsA. [no additional patient characteristics due to handwritten notes]“This survey [PROMIS-29] is much more all-encompassing” PsA. [no additional patient characteristics due to handwritten notes]“This [PROMIS-29], to me, is perfect! Pointed questions, time frames, and pertinent information. I would fill this out feeling like my condition was being well understood, and with the feeling that I could accurately answer the questions to give a ‘true’ impression of my PsA.” [no additional patient characteristics due to handwritten notes].
AS Patient Feedback
Theme: Activities of Daily Living
“I do appreciate that they ask about living life things, like carrying grocery bags.” Female participant“I really like that the HAQ is more objective and that it focuses on actions or movements that one might do on a daily basis.” Gender not identifiable from audio“I really liked the grocery bag question and the sitting question. I just thought that I'd be able to give a more valid answer to those questions.” Female participant
“I marked myself as a 70 but what does that mean? [Referring to HAQ-S measure of stiffness “0 = No Stiffness and 100 = Very severe stiffness”]… the second question, ‘Are you able to sit for long periods of time?’ Whenever I'm asked that question, I often wonder what exactly is a long period of time? Because it doesn’t ask to clarify is it 30 min? Is it an hour? Is it an entire day? So, one person may have the worst amount of time in 30 min but—and answer with much difficulty. But then another person may sit the entire day and answer the same question, so it doesn’t really, exactly, kind of rate how much sitting hurts.” Male participant
Theme: Fatigue
“My provider used it [BASDAI] to assess me. And I find it to be a really representative tool for my condition.” Male participant“The [BASDAI] form overall looks very inviting and not as intimidating as other forms.” Male participant“I was really happy to see that the fatigue was listed. That’s one that it seems that none of the doctors want to touch. You know, everyone seems to be focused on their area—rheumatology, orthopedic, etc. And you try to talk to them about fatigue, and it's like, you know, it’s taboo. No one wants to touch it or try to solve it.” Male participant“Fatigue and tiredness is something that I struggle with on a day-to-day basis. And in speaking with other rheumatologists in the past, it’s something that can be under-emphasized probably. So, I love that it’s called out as one of the first questions there.” Male participant“I think it’s essential that we look at fatigue and that it’s evaluated. I do wonder how to give context to fatigue. Particularly in communication between the patient and the healthcare provider because when I’m saying that my fatigue is severe, I'm saying that like I can’t get anything done. Like, nothing at all. But, like—how could we provide the texture to that in the conversation? I guess that’s my thing. Because, like, fatigue, it’s not just a physical and mental, emotional aspects of it, but then there’s like a psych out factor, too, where you don’t want to waste energy you do have. So, like I don't know like—it’s just hard to say, like I might be terrified to go grocery shopping because I feel like crap, but I know I could feel crappier. But then, if I feel a little better, do I want to risk it? But, I still have to go grocery shopping.” Female participant