Background
Methods
Qualitative interviews with MF patients
Patient recruitment
Patient eligibility criteria
Patient interview methods
Data collection
Literature review
Expert advice meetings
Results
Qualitative interviews with MF patients
Demographics
Total combined sample (N = 23) N (%) | RUX- experienced total (n = 16) n (%) | RUX-naïve total (n = 7) n (%) | |
---|---|---|---|
Gender | |||
Female | 10 (43.5%) | 7 (43.8%) | 3 (42.9%) |
Male | 13 (56.5%) | 9 (56.3%) | 4 (57.1%) |
Age | |||
Range | 29.9–85.4 | 29.9–85.4 | 45.9–70.7 |
Mean (SD) | 65.5 (12.2) | 67.2 (15.5) | 58.7 (8.8) |
Ethnicity | |||
Not Hispanic/Latino | 23 (100.0%) | 16 (100.0%) | 7 (100.0%) |
Race | |||
White/Caucasian | 21 (91.3%) | 14 (87.5%) | 7 (100.0%) |
Othera | 2 (8.7%) | 2 (12.5%) | 0 (0.0%) |
Education | |||
High school diploma (or GED) or less | 5 (21.7%) | 3 (18.8%) | 2 (28.6%) |
Some college or certificate program | 5 (21.7%) | 4 (25.0%) | 1 (14.3%) |
College or university degree (2- or 4-year) | 7 (30.4%) | 3 (18.8%) | 4 (57.1%) |
Graduate degree | 6 (26.1%) | 6 (37.5%) | 0 (0.0%) |
Other | 1 (4.3%) | 1 (6.3%) | 0 (0.0%) |
Living status | |||
Living alone | 3 (13.0%) | 3 (18.8%) | 0 (0.0%) |
Living with family or friends | 18 (78.3%) | 12 (75.0%) | 6 (85.7%) |
Other | 2 (8.7%) | 1 (6.3%) | 1 (14.3%) |
Annual household income | |||
Under $25,000 | 2 (8.7%) | 1 (6.3%) | 1 (14.3%) |
$25,000 to $49,999 | 1 (4.3%) | 1 (6.3%) | 0 (0.0%) |
$50,000 to $74,999 | 6 (26.1%) | 4 (25.0%) | 2 (28.6%) |
$75,000 to $99,999 | 6 (26.1%) | 3 (18.8%) | 3 (42.9%) |
$100,000 and over | 4 (17.4%) | 4 (25.0%) | 0 (0.0%) |
Not answered | 4 (17.4%) | 3 (18.8%) | 1 (14.3%) |
Work status | |||
Working full-time | 5 (21.7%) | 2 (12.5%) | 3 (42.9%) |
Working part-time | 1 (4.3%) | 1 (6.3%) | 0 (0.0%) |
Retired | 14 (60.9%) | 12 (75.0%) | 2 (28.6%) |
Unemployed | 1 (4.3%) | 0 (0.0%) | 1 (14.3%) |
On disability | 2 (8.7%) | 1 (6.3%) | 1 (14.3%) |
Relationship status | |||
Single | 1 (4.3%) | 0 (0.0%) | 1 (14.3%) |
Have a significant other | 18 (78.3%) | 13 (81.3%) | 5 (71.4%) |
Married | 1 (4.3%) | 0 (0.0%) | 1 (14.3%) |
Divorced/Separated | 2 (8.7%) | 2 (12.5%) | 0 (0.0%) |
Widowed | 1 (4.3%) | 1 (6.3%) | 0 (0.0%) |
Health in general | |||
Excellent | 1 (4.3%) | 1 (6.3%) | 0 (0.0%) |
Very good | 4 (17.4%) | 3 (18.8%) | 1 (14.3%) |
Good | 8 (34.8%) | 3 (18.8%) | 5 (71.4%) |
Fair | 6 (26.1%) | 5 (31.3%) | 1 (14.3%) |
Poor | 4 (17.4%) | 4 (25.0%) | 0 (0.0%) |
Condition severity | |||
Mild | 6 (26.1%) | 1 (6.3%) | 5 (71.4%) |
Moderate | 12 (52.2%) | 11 (68.8%) | 1 (14.3%) |
Severe | 5 (21.7%) | 4 (25.0%) | 1 (14.3%) |
Concept elicitation interviews
Patient-reported symptoms of MF
Concept | Frequency of RUX-experienced patient reports; n = 16 n (%) | Frequency of RUX-naïve patient reports; n = 7 n (%) | Total (N = 23) N (%) | Concept reported by both RUX-experienced and RUX-naïve patients |
---|---|---|---|---|
Fatigue and/or tiredness | 16 (100.0%) | 6 (85.7%) | 22 (95.7%) | ✓ |
Shortness of breath | 11 (68.8%) | 0 (0%) | 11 (47.8%) | |
Pain below the ribs on the left side and/or stomach pain and/or abdominal pain | 9 (56.3%) | 6 (85.7%) | 15 (65.2%) | ✓ |
Enlarged spleen | 9 (56.3%) | 4 (57.1%) | 13 (56.5%) | ✓ |
Uncomfortable abdomen and/or abdominal discomfort and/or bloating and/or feeling full | 8 (50.0%) | 1 (14.3%) | 9 (39.1%) | ✓ |
Full quickly and/or filling up quickly and/or eating less | 7 (43.8%) | 4 (57.1%) | 11 (47.8%) | ✓ |
Night sweats and/or general sweats | 6 (37.5%) | 4 (57.1%) | 10 (43.5%) | ✓ |
Bone pain | 6 (37.5%) | 1 (14.3%) | 7 (30.4%) | ✓ |
Muscle pain and/or muscle cramps | 6 (37.5%) | 0 (0%) | 6 (26.1%) | |
Itching | 5 (31.3%) | 4 (57.1%) | 9 (39.1%) | ✓ |
Dizziness | 3 (18.8%) | 1 (14.3%) | 4 (17.4%) | ✓ |
Bruise easily | 3 (18.8%) | 0 (0%) | 3 (13.0%) | |
Balance | 2 (12.5%) | 0 (0%) | 2 (8.7%) | |
Brain fog | 2 (12.5%) | 0 (0%) | 2 (8.7%) | |
Frequent urination | 2 (12.5%) | 0 (0%) | 2 (8.7%) | |
Hot flashes | 2 (12.5%) | 0 (0%) | 2 (8.7%) | |
Muscle weakness | 2 (12.5%) | 0 (0%) | 2 (8.7%) | |
Peripheral neuropathy and/or numbness | 2 (12.5%) | 0 (0%) | 2 (8.7%) | |
Weight loss | 1 (6.3%) | 3 (42.8%) | 4 (17.4%) | ✓ |
Appetite loss | 0 (0%) | 1 (14.3%) | 1 (4.3%) | |
Cold | 0 (0%) | 1 (14.3%) | 1 (4.3%) | |
Joint pain | 1 (6.3%) | 1 (14.3%) | 2 (8.7%) | ✓ |
Rashes | 0 (0%) | 1 (14.3%) | 1 (4.3%) | |
Achiness | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Back pain | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Burning sensation | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Fevers and/or chills | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Gout | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Hand pain | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Headaches | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Inflammation in arm | 1 (6.3%) | 0 (0%) | 1 (4.3%) | |
Nausea | 1 (6.3%) | 0 (0%) | 1 (4.3%) |
Concept | RUX-experienced example patient expressions | RUX-naïve example patient expressions |
---|---|---|
Fatigue and/or tiredness |
(05-02-M-74)
… all of the sudden I started getting more lethargic and, and more tired, more fatigued.
(01-05-F-55)
I felt that I was very tired all the time.
|
(01-04-M-50)
… when I was first diagnosed I’d get really fatigued during the day. Come home, take a three-four hour nap and, uh, never felt any different. Still fatigued …
(01-14-F-67)
I was just tired.… But every day around three o’clock I laid down and went to bed and I couldn’t sit up very long.… my body just felt very uncomfortable.
|
Shortness of breath |
(01-02-M-73)
I can’t, sometimes, ah, I feel like I can’t even catch my breath. It’s, it’s getting worse. It’s not getting better at all.…
| N/A |
Pain below the ribs on the left side and/or stomach pain and/or abdominal pain |
(03-09-F-29)
I used to have a lot of spleen pain before I was on treatment.… … it’s upper left … right under where my boob is … all the way to the left. Like on the side.
|
(01-17-M-70)
… it is definitely on the, uh, left side of the ribcage.… It’s continual.… But it’s not chronic in that the only time I’d really know I have it is if I press on it or I tighten my belt too tight. It’s not that it’s a throbbing continual pain.
(01-17-M-70)
… it is definitely on the, uh, left side of the ribcage.… It’s continual.… But it’s not chronic in that the only time I’d really know I have it is if I press on it or I tighten my belt too tight. It’s not that it’s a throbbing continual pain.
|
Enlarged spleen |
(03-01-M-66)
A: Uh, yes.… The spleen pain was very – I knew when that
pain – I call it abdominal pain because my spleen was so big. It was bigger than a football and, and it went from one side of my body to the other. So whenever it hurt it would hurt in my entire abdomen area, but it was … definitely caused by the spleen. I, I could tell.
|
(01-16-F-59)
I have, uh, an enlarged spleen, which I can feel.… Well I don’t feel it here when I’m sitting up, but when I lie down
(01-01-F-58)
I felt that my spleen might be enlarged, but of course I’m not sure. I couldn’t – I don’t know … So when the spleen becomes enlarged sometimes it feels uncomfortable or you get some sort of pain down there
|
Uncomfortable abdomen and/or abdominal discomfort and/or bloating and/or feeling full |
(05-01-F-69)
Back in December of 2007 … I had been experiencing since the previous October a lot of pain on my left side … feeling very full all the time, very, very kind of bloated and uncomfortable.
|
(01-04-M-50-P)
I get an almost a nausea feeling from it. Uh, and other than that it means you feel full.
|
Full quickly and/or filling up quickly and/or eating less |
(05-01-F-69)
… feeling very full all the time …
03-09-F-29)
I had been noticing, up to that point, I’d been eating less.…I was having a really hard time eating … regular sized meals …
|
(01-04-M-50-P)
I do have that too.… the feeling of fullness is I would eat – like right now I would eat maybe a quarter of the portion I’m normally used to eating and it just – I can’t eat no more. I’m just full.
|
Night sweats and/or general sweats |
(05-03-M-79)
I was having terrible night sweats.… They were very, very bad sweats.… It’s almost like I was waddling on water and as soon as I went to bed, they started. And then they’d go on all night.… Every night.
|
(01-01-F-58-P)
Well I wake up and I just feel like a flush of warmth like, um, kind of like hot flashes
(01-14-F-67)
…I just can sometimes just sit there and have company and have 10 napkins besides me and just keep, um, just keep trying to wipe away the sweat.
|
Bone pain |
(03-07-F-64)
I would get a lot of long bone pain … particularly when I was lying on my couch.… I’ve only had it in my legs. I’ve never had it substantially in my arms, but … I still will get that in my legs.
|
(01-01-F-58)
I have bone pain.…
(01-01-F-58)
… every time I lie down it hurts for a little while. Um, when I get up it hurts for a little while and if I am say driving for a long time it hurts.
|
Muscle pain and/or muscle cramps |
(03-09-F-29)
… within the first year a few more symptoms kind of started showing up, like … more bone pain, joint pain and muscle pain.
| N/A |
Itching |
(01-02-M-73-P)
...it was the worse thing you ever want to see. I mean, I was slapping myself, it was so bad.… I didn’t want to scratch it because I was leaving … red blotches, so I was slapping myself.
|
(01-01-F-58)
I had no rash, nothing coming up on my body, but just a very severe itching, particularly after showers.
(01-01-F-58)
… in 2013, last year, uh, I had been feeling very severe itching,
|
Dizziness |
(01-05-F-55)
… a little dizzy.
|
(01-04-M-50)
… weight loss and dizziness.… Uh, it’s like, uh, getting on like one of them kids’ toys and getting spun around and then standing up and you just – it’s – sometimes it’s difficult to stand up. Usually I got to lean up against something for about 10 s for it to go away.
|
Bruise easily |
05-01-F-69)
Well very easily bruising of course because of the lower platelet count.… if I get a cut or, you know, something like that it bleeds for quite a while.… I always, you know, of course have the bruising if I bump into anything.…
| N/A |
Balance |
(01-09-F-73)
The balance is when I get up and I tend to sometimes go to my left and hopefully there’s something there to grab on to. I’m actually considering a cane that – I feel I’m at that point where I should have something to … rely on.… You know, and I’ve learned to get up slowly and …
| N/A |
Brain fog |
(03-09-F-29)
It wasn’t that bad around the time that I was first diagnosed, then even … the first year or so … I didn’t really have it that bad. And I don’t know how much of it is because of the disease or it’s the Jakafi.… I don’t know which one … causes that. Or if it’s just the lack of sleep that I get.… Or … the fatigue …
| N/A |
Frequent urination |
(01-09-F-73)
It’s just … I have to go to the bathroom and when I have to go I better move quickly. Yeah … and it’s more so now because my bladder is being squished more … which I hate. I wear … the little panty liners when I came when I’m home. If I go out I wear a very thick one. And I’ve been looking at … those stupid diapers for adults, which I’m not looking forward to but … just to be on the safe side. ‘Cause if I have to go it’s going. It’s not gonna stop.
| N/A |
Hot flashes |
(05-01-F-69)
I’ve had somewhat of the … night sweats.… I think the only thing I experience at night has more to do with hot flashes than actual night sweats.
| N/A |
Muscle weakness |
(01-09-F-73)
… the legs not wanting to function.… And muscle weakness. I have no muscle whatsoever in my body.… Just no strength.
| N/A |
Peripheral neuropathy and/or numbness |
(05-01-F-69)
I do have some … peripheral neuropathy in my … lower legs … in my shin area and my feet.
| N/A |
Weight loss |
(05-03-M-79)
I went to my family doctor because I had lost a lot of weight.… I could barely stand up.… I found out the reason was that my blood count was so low … Of course I lost so much weight, I lost about 40 pounds in a month
|
(01-11-M-69)
I just remember that I just started losing weight for no, no apparent reason.… I was losing weight and I didn’t really need to.
|
Appetite loss | N/A |
(01-01-F-58)
I used to eat, uh, more food in, in a meal and I used to have more meals and now I, I often, uh, skip a meal often and, uh, I, uh, I don’t have the appetite, uh, that I used to have.
|
Cold | N/A |
(01-03-M-59)
I notice I get a cold every year, uh, but I don’t know if that’s just [State] in general, you know. When I came back – I never got a cold when I was in [Country]. I got the flu, but not a cold every year.
|
Joint pain |
(03-09-F-29)
I would say within the first year a few more symptoms … started showing up, like … joint pain …
|
(01-11-M-69)
I usually experience some type of joint pain.…
|
Rashes | N/A |
(01-03-M-59)
So, uh, besides that I get rashes.
|
Achiness |
(05-05-M-85)
I was hurting, aching. … they took me to the doctor to find out why I was weak and lightheaded – and aching.…
| N/A |
Back pain |
(01-02-M-73)
In my back. I have severe back pains since all this has come out, too … I’ve always had back pain but not, nothing like this here.… it would come and go but this one here has come and it stays. It doesn’t leave me. It’s constant.
| N/A |
Burning sensation |
(05-01-F-69)
… felt like you had kind of hot blood running through your … body, especially through your upper torso to where it was a burning sensation.…
| N/A |
Fevers and/or chills |
(04-03-M-73)
Once in a while when I have to go to bed early I need a couple Tylenols I get a fever or a chill, variable between those two extremes. That’s not very common … maybe once every two weeks or so, when I overexert.
| N/A |
Gout |
(05-04-F-76)
… it came on with the myelofibrosis … at one point they started me on the RUX2, and then they said, oh, we forgot to give you the gout medicine, so.… Then they gave me one, and that didn’t hold it, so they gave me a second one. So I was taking it twice a day. I’m only taking it once a day now.…
| N/A |
Hand pain |
(03-07-F-64)
It’s only in my hands. The first time it happened was before I was diagnosed with myelofibrosis … I was in my kitchen up north, walking across the room and got intense pain in the joint, the inner joint, the palm side of one finger, intense, 10. And I looked at it, and it was purple, like I called it a splinter hemorrhage which it’s not correct. It was like a star.… it was like a very specific black and blue point …
| N/A |
Headaches |
(01-09-F-73)
Terrible headaches.
| N/A |
Inflammation in arm |
(01-09-F-73)
It was a lot of fluid in my elbow and it’s, it’s come down here and I’m not quite sure what’s going on there.… it’s very red and sore.… It’s swollen …
| N/A |
Nausea |
(05-04-F-76-P)
I just don’t want to eat. It, it makes me feel sick to my stomach.… Makes me feel like I might vomit.
(05-04-F-76-P)
Oh, lots.… every time I pull the food out.… And start – and start eating it. Usually I can get a couple bites before it hits.
| N/A |
Patient-reported impacts of MF
Saturation
Concepts | First four interviews vs. next foura | First eight interviews vs. next foura | First twelve interviews vs. next foura | Totalb | Saturation achievedc |
---|---|---|---|---|---|
Fatigue and/or tiredness | 3 vs. 4 | 7 vs. 3 | 10 vs. 3 | 13 | Yes |
Enlarged spleen | 1 vs. 2 | 3 vs. 2 | 5 vs. 3 | 8 | Yes |
Pain below the ribs on the left side and/or stomach pain and/or abdominal pain | 1 vs. 2 | 3 vs. 0 | 3 vs. 3 | 6 | Yes |
Shortness of breath | 4 vs. 0 | 4 vs. 1 | 5 vs. 1 | 6 | Yes |
Muscle pain and/or muscle cramps | 1 vs. 2 | 3 vs. 0 | 3 vs. 2 | 5 | Yes |
Bone pain | 0 vs. 1 | 1 vs. 1 | 2 vs. 2 | 4 | Yes |
Itching | 1 vs. 1 | 2 vs. 1 | 3 vs. 1 | 4 | Yes |
Night sweats/general sweats | 1 vs. 2 | 3 vs. 1 | 4 vs. 0 | 4 | Yes |
Uncomfortable abdomen and/or abdominal discomfort and/or bloating and/or feeling full | 0 vs. 2 | 2 vs. 0 | 2 vs. 2 | 4 | Yes |
Bruise easily | 1 vs. 1 | 2 vs. 0 | 2 vs. 1 | 3 | Yes |
Dizziness | 2 vs. 0 | 2 vs. 1 | 3 vs. 0 | 3 | Yes |
Balance | 2 vs. 0 | 2 vs. 0 | 2 vs. 0 | 2 | Yes |
Brain fog | 0 vs. 0 | 0 vs. 0 | 0 vs. 2 | 2 | Questionable |
Frequent urination | 1 vs. 0 | 1 vs. 1 | 2 vs. 0 | 2 | Yes |
Full quickly and/or filling up quickly and/or eating less | 0 vs. 1 | 1 vs. 0 | 1 vs. 1 | 2 | Yes |
Muscle weakness | 1 vs. 0 | 1 vs. 1 | 2 vs. 0 | 2 | Yes |
Peripheral neuropathy | 0 vs. 2 | 2 vs. 0 | 2 vs. 0 | 2 | Yes |
Achiness | 0 vs. 0 | 0 vs. 1 | 1 vs. 0 | 1 | Yes |
Back pain | 1 vs. 0 | 1 vs. 0 | 1 vs. 0 | 1 | Yes |
Burning sensation | 0 vs. 1 | 1 vs. 0 | 1 vs. 0 | 1 | Yes |
Fevers/chills | 0 vs. 0 | 0 vs. 1 | 1 vs. 0 | 1 | Yes |
Gout | 0 vs. 0 | 0 vs. 1 | 1 vs. 0 | 1 | Yes |
Hand pain | 0 vs. 0 | 0 vs. 0 | 0 vs. 1 | 1 | Questionable |
Headaches | 0 vs. 0 | 0 vs. 0 | 0 vs. 1 | 1 | Questionable |
Hot flashes | 0 vs. 1 | 1 vs. 0 | 1 vs. 0 | 1 | Yes |
Inflammation in arm | 1 vs. 0 | 1 vs. 0 | 1 vs. 0 | 1 | Yes |
Joint pain | 0 vs. 0 | 0 vs. 0 | 0 vs. 1 | 1 | Questionable |
Weight loss | 0 vs. 0 | 0 vs. 0 | 0 vs. 1 | 1 | Questionable |
Root Concept | Interviews 1–3 vs. Interviews 4–5 (first three interviews vs. next two)a | Interviews 1–5 vs. Interviews 6–7 (first five interviews vs. last two)a | Totalb | Saturation achieved |
---|---|---|---|---|
Fatigue and/or tiredness | 2 vs. 2 | 4 vs. 2 | 6 | Yes |
Pain below the ribs on the left side | 2 vs. 1 | 3 vs. 2 | 5 | |
Enlarged spleen | 2 vs. 1 | 3 vs. 1 | 4 | |
Night sweats/general sweats | 1 vs. 2 | 3 vs. 0 | 3 | |
Weight loss | 2 vs. 1 | 3 vs. 0 | 3 | |
Itching | 1 vs. 0 | 1 vs. 1 | 2 | |
Appetite loss | 1 vs. 0 | 1 vs. 0 | 1 | |
Bone pain | 1 vs. 0 | 1 vs. 0 | 1 | |
Cold | 1 vs. 0 | 1 vs. 0 | 1 | |
Dizziness | 1 vs. 0 | 1 vs. 0 | 1 | |
Full quickly/filling up quickly | 1 vs. 0 | 1 vs. 0 | 1 | |
Joint pain | 0 vs. 1 | 1 vs. 0 | 1 | |
Rashes | 1 vs. 0 | 1 vs. 0 | 1 |
Cognitive debriefing interview and ePRO usability
INSTRUCTION TEXT: The following screens display questions about your myelofibrosis symptoms. Please rate each symptom at its WORST during the PAST 24 h | ||
---|---|---|
1 | During the PAST 24 HOURS, at its WORST, how was your … Filling up quickly when you eat (feeling of fullness soon after you begin to eat) | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
2 | During the PAST 24 HOURS, at its WORST, how was your … Abdominal discomfort (feeling uncomfortable, pressure or bloating) | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
3 | During the PAST 24 HOURS, at its WORST, how was your … Inactivity (including work, home and social activities) | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
4 | During the PAST 24 HOURS, at its WORST, how was your … Night sweats (excessive sweating during sleep) | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
5 | During the PAST 24 HOURS, at its WORST, how was your … Itching | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
6 | During the PAST 24 HOURS, at its WORST, how was your … Bone pain (widespread pain, not joint pain or arthritis) | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
7 | During the PAST 24 HOURS, at its WORST, how was your … Pain below the ribs on the left side | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
8 | During the PAST 24 HOURS, at its WORST, how was your … Fatigue (tiredness) | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
9 | During the PAST 24 HOURS, at its WORST, how was your … Shortness of breath | (Absent) 0 1 2 3 4 5 6 7 8 9 10 (Worst Imaginable) |
10 | During the PAST 24 HOURS, how was your … Appetite | (Normal appetite) 0 1 2 3 4 5 6 7 8 9 10 (Complete loss of appetite) |
Literature review
Concept | Concept description |
---|---|
Episodes of nighttime sweating that soak your nightclothes or bedding and are related to some underlying cause | |
Feeling of tiredness that lasts a long time and doesn’t go away even after rest | |
Skin tingling or irritation that makes one want to scratch the itchy area | |
Aching or other discomfort in one or more bones | |
Decrease in body weight, when one did not try to lose the weight on their own | |
Body temperature that is higher than normal | |
Pain/discomfort in the area from below one’s chest to groin | |
Feeling full sooner than normal or after eating less than usual | |
Pain or discomfort located under the ribs on the side of the abdomen | |
Feeling of not getting enough air (shortness of breath) | |
Reduced desire to eat | |
Feeling triggered in the nervous system. It may be sharp or dull, it may come and go, or it may be constant. It may be felt in one area of the body, such as the back, abdomen or chest or may be felt all over | |
Reflex that keeps one’s throat and airways clear | |
Involves more than one muscle and can involve ligaments, tendons, and fascia, the soft tissues that connect muscles, bones, and organs | |
Pain in any region of the head | |
Abnormal sensations that can occur anywhere in your body, but are often felt in your fingers, hands, feet, arms, or legs | |
Having three or fewer bowel movements in a week. The stool can be hard and dry and sometimes it is painful to pass | |
Having loose, watery stools more than three times in 1 day. One may also have cramps, bloating, nausea and an urgent need to have a bowel movement | |
Becoming too thin, but one doesn’t eat enough | |
Dizziness is a feeling of being lightheaded or losing your balance. Vertigo is a feeling that the room is spinning | |
An uneasy or unsettled feeling in the stomach together with an urge to vomit | |
Swelling of extremities (arms and legs) | |
Altered bowels [25] | Altered movement of food through the digestive tract. This could be in the form of diarrhea, constipation or bowel incontinence |
Altered consciousness [28] | Altered awareness |
Delirium [28] | Sudden severe confusion due to rapid changes in brain function that occur with physical or mental illness |
Easy bruising [37] | Bleeding episodes |
Palpitations [28] (including compensatory tachycardia) | Feelings or sensations that your heart is pounding or racing. They can be felt in your chest, throat, or neck |
Photophobia [28] | Eye discomfort in bright light |
Sweats [16] | Sweating is the release of liquid from the body’s sweat glands. Patients may experience excessive sweating due to MF |
Abdominal swelling [14] | When the belly area is bigger than usual |
Vomiting [20] | Forcing the contents of the stomach up through the esophagus and out of the mouth |
Weakness [28] | Reduced strength in one or more muscles |
Expert advice meetings
Symptoms | Descriptiona | Experienced pre and/or post ruxolitinib treatment failure | Frequency of expert report (N = 4) n (%)b |
---|---|---|---|
Fatigue | Lack of energy, feeling of weakness and lethargy | Pre | 4 (100%) |
Post | 4 (100%) | ||
Night sweats | Excessive sweating at night requiring a change of clothing and/or beddings | Pre | 4 (100%) |
Post | 4 (100%) | ||
Weight loss | Unintentional loss of weight | Pre | 4 (100%) |
Post | 4 (100%) | ||
Abdominal pain | Pain associated with an enlarged spleen | Pre | 4 (100%) |
Post | 3 (75%) | ||
Fever | Low grade fever, feelings of hotness that may or may not be accompanied by sweating. A reoccurrence of fever after receiving ruxolitinib treatment could signal treatment failure or a true infection/progression of disease | Pre | 3 (75%) |
Post | 3 (75%) | ||
Bone pain | Constant pain experienced all over the body. May respond to ruxolitinib treatment but not completely | Pre | 3 (75%) |
Post | 2 (50%) | ||
Constipation | Bowel movement once every 3 days characterized by hard stools or straining to go to the bathroom. It could be associated with the enlarged spleen (enlarged spleen blocking patients’ bowels). It is not a common MF symptom | Pre | 3 (75%) |
Post | 2 (50%) | ||
Poor appetite | Lack of feeling of hunger or not wanting to eat. It is typically associated with early satiety and enlarged spleen | Pre | 2 (50%) |
Post | 2 (50%) | ||
Early satiety | Feeling full fast after eating a meal. It could be associated with the enlarged spleen | Pre | 2 (50%) |
Post | 2 (50%) | ||
Abdominal discomfort | Associated with the enlarged spleen | Pre | 2 (50%) |
Post | 1 (25%) | ||
Diarrhea | Loose bowel movements or loose stools. | Pre | 2 (50%) |
Post | 1 (25%) | ||
Itching | It is also known as pruritus and can occur all over the body or certain parts of the body. It can occur when a patient comes in contact with a trigger (e.g., water) | Pre | 2 (50%) |
Post | 1 (25%) | ||
Shortness of breath | Needing to catch one’s breath. It can occur at rest or with exertion | Pre | 2 (50%) |
Post | 1 (25%) | ||
Abdominal fullness | Excess gas build up in the intestinesc | Pre | 1 (25%) |
Post | 1 (25%) | ||
Bleeding | Break in blood vessels such as gastrointestinal, mucosal, and hemorrhoidal bleeding, and nose bleeds. It typically occurs externally. | Pre | 1 (25%) |
Post | 2 (50%) | ||
Easy bruising | Bruising (blue-like appearance) under the skin due to minor trauma | Pre | 1 (25%) |
Post | 1 (25%) | ||
Lightheadedness | Feeling of dizziness | Pre | 1 (25%) |
Post | 1 (25%) | ||
Nausea | Feeling an urge to vomit.c It could be as a result of eating specific kinds of food or the enlarged spleen | Pre | 1 (25%) |
Post | 1 (25%) | ||
Reflux | Leaking of contents (food or liquid) backwards from the stomach into the esophagusc | Pre | 1 (25%) |
Sweating | Release of liquid from the body’s sweat glands. Patients may experience excessive sweating due to MFc | Pre | 2 (50%) |
Headaches | An ache or pain in the head | Pre | 1 (25%) |
Impotent | Loss of sexual function | Pre | 1 (25%) |
Vomiting | Forcing the contents of the stomach up through the esophagus and out of the mouthc | Pre | 1 (25%) |