Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout
Quotes | # Votes | |
|---|---|---|
Group 4: African-American women (six patients) | ||
Not convinced that the medication is effective and should be taken daily | “I felt it wasn’t helping me.” | 20 |
“When I missed a few days nothing changed.” | ||
“Taking it did not make any difference.” | ||
“If it is doing good then why should you have to take additional medications?” | ||
“I would miss days and not feel any different from when I was taking it.” | ||
“Maybe it was a dosing issue?” | ||
“I have intermittent flare ups and I have learned to use colcrys as a treatment.” | ||
Forgetting to take the medicine | “I’m not going to forget the gout pill during an active attack. It more of a mental thing (to forget the routine otherwise) that I think its not doing any good.” | 21 |
“Sometimes I will just plain forget because I am busy etc.” | ||
“If I forget I will take it later in the day. I go ahead and take it because I do not want to flare up.” | ||
“I will forget because I am taking so many other medications.” | ||
“Can’t remember if I have taken it that day so I will not take an extra because I do not want to take double.” | ||
“If your daily routine is interrupted then it is easy to forget because you are used to taking it at the same time each day.” | ||
“Did I take it, did I forget?” | ||
Side effects | “I have gastritis. Switched my times taking it now and night with milk and I have not had anymore episodes.” | 15 |
“Sometimes it will make me sick. I will throw up.” | ||
“I just got tired of being sick on my stomach.” | ||
“You may wonder what you have eaten but it only happens when you take that pill.” | ||
“I had abdominal pain.” | ||
“…(it) caused diarrhea.” | ||
Other concomitant medications | “Too many pills to take for other conditions.” | 14 |
“Additional gout medications and still having flares.” | ||
“All of my medications are grouped together. If I miss one I miss them all.” | ||
“I keep thinking about the milligrams that I am taking. I don’t want to hurt my body. I am taking to many milligrams.” | ||
“Sometimes I feel “lazy” because I take so many pills.” | ||
Concern about drug interactions | I don’t know what affect the other medicines have on my gout medications. Is that what’s making me sick. I don’t know. | 11 |
Cost | “I have to be able to get my other prescriptions, and this gives me trouble due to cost.” | 5 |
“Trying to balance between my medications and my daughters meds makes it very difficult.” | ||
Travel and planning for travel | “Sometimes I am out of town, and did not have my medication with me.” | 4 |
“I take my whole bottle so that I will not do without.” | ||
“My medication come from CVS so I can get them from most places in the US.” | ||
Group 5: African-American women (seven patients) | ||
Cost | “My insurance does not cover this.” | 27 |
“I am on fixed income, $77 for 1 month, sometimes, I don’t have money for copay.” | ||
“Doctor has to call in the medication despite the prescription- due to insurance company.” | ||
Forgetting to take the medicine | “Problem with eyes, reading the label is not easy taking too may other medications.” | 21 |
“Usually took it every day before work; Sunday and Saturday is an issue, since I don’t go to work.” | ||
“Out of routine.” | ||
Other concomitant medications | “I get nausea from other medications.” | 13 |
“Gout pill is the last one I take. So when I am nauseous from others, I skip.” | ||
Too many medications | “I did not want to take it because I was taking so many other medications.” | 10 |
“I am tired of taking medications.” | ||
“Recently have had very high BP in 200 s, got a lot of pills that required more allopurinol.” | ||
Medication refill issues | “It may have been that I could not pick up the prescription from the pharmacy.” | 9 |
“When I ran out, did not fill it as soon as I could.” | ||
“Felt lazy.” | ||
“Too may things to do…” | ||
“I have negligence…” | ||
Alternative medicine choices | “I read cherry juice was god, so I took cherry juice instead of allopurinol.” | 3 |
“I don’t like to take medicine.” | ||
“I tried eating cherries…” | ||
Not convinced that the medication is effective and should be taken daily | “Not hurting in weeks, So I thought I did not need to take it.” | 6 |
“If I skip it for a week, I feel flare coming on, but less than that can’t see a difference.” | ||
Large pill size and vocal cord problems with swallowing | “Pills are big, now taking 5 other pills.” | 16 |
“I break the pill up due to swallowing problem.” | ||
“Sometimes have problem swallowing because of vocal cord problems.” | ||
Group 6: African-American men (three patients) | ||
Side effects | “It makes me sluggish along with my other medications- not knowing which medication causes drowsiness.” | 11 |
“Bad taste in mouth.” | ||
“Belching” | ||
“I am a retired entertainer, you don’t want to be drowsy, you want to be alert.” | ||
“I used to play at church. You can’t do that when you are sluggish. I say “Amen, I am out of here.” | ||
Too many medications | “I have so much on my mind due to the all the pills I have to take.” | 9 |
“My mind comes and goes, I was in the military.” | ||
“Getting frustrated with the routine of taking so much medication- I just want to stop.” | ||
Not convinced that the medication is effective and should be taken daily | “When I feel better, I don’t take it.” | 8 |
“If everything is good, you feel better in the morning – I don’t need it today.” | ||
“If I could not do it today (take my allopurinol), I’d be ok.” | ||
“If I feel better, I think I don’t need it today.” | ||
“If better in the morning, I take my allopurinol in the afternoon.” | ||
Forgetting to take the medicine and confusion | “When I don’t see in the pill box, I miss it.” | 8 |
“Usually I set pills out at night; I take 12 pills, so I have 2 pill boxes, sometimes I forget which day it is and forget to take it.” | ||
“I have a pill box too, if I am feeling ok, I am not going to take 2–3 of them.” | ||
“Sometime I can’t remember, because I took so many pills.” | ||
“I take 6 pills a day- sometime I can’t remember, because I take so many pills.” | ||
“I take 7 pills, if I am tired, I can’t remember, whether I took it.” | ||
Cost/economic impact | “Very expensive.” | 5 |
“Copay was $20- I have to ration the pills; I go with the pill I need the most, when I do that.” | ||
“I pay $40 co-pay.” | ||
“I live in the retirement home; so (what I have left for) my rent goes up or down with my copays.” | ||
“My income changed all of a sudden, when I lost my job, it was difficult.” | ||
Pill size | “Pill too big” | 3 |
“Sometimes it’s hard for me to swallow, I take 600 mg.” | ||
“The 300 mg pill is bigger than 100 mg. I had to take a lot of water to wash it down.” | ||
“Have to take one pill at a time.” | ||
Side effects and problems with taking it on an empty stomach | “When the pain is very severe, I can’t eat and I don’t take pills without eating.” | 1 |
“Makes your stomach queasy.” | ||
“I took allopurinol later in the day without food, stomach starting feeling bad.” | ||
Group 7: African-American men (five patients) | ||
Forgetting to take the medicine | “It could be business travel, just a busy day, or hey I forgot that day. I have started putting my medicine in the weekly pill distributor. I also take blood pressure medicine and will forget it from time to time. I will forget my gout medication more regularly. Both must be ordered and for some reason I will remember to order the blood pressure medication more often. I don’t tend to forget it.” | 16 |
“It is easy to forget on a vacation day.” | ||
Medication causing the flares | “(allopurinol) caused me to have big flare where I had to go to the emergency room.” | 14 |
“I just don’t take it. - the attacks were coming too frequently. To the point I could not get out of the bed.” | ||
Not convinced that the medication is effective | “Would work at times but at others it would not.” | 11 |
“I would still have flare ups. (I had been on it for at least 2 months then again within the first 30 days).” | ||
Side effects | “…Made me nauseated. – felt like I wanted to throw up.” | 10 |
“Hard on the stomach.” | ||
“It just don’t feel right.” | ||
“Its better when I drink milk, but I’m not sure if that is causing me to flare more.” | ||
“Continuously in the bathroom issue. (Diarrhea) after the second day in my system it would start.” | ||
“Diarrhea at least once a day.” | ||
Refill issues | “….mainly my fault.” | 10 |
“I just didn’t order it in time.” | ||
Cost/economic impact | “Uloric worked fine with the gout flares, but due to my insurance the medication was expensive. Additional paperwork is required yearly to get it approved.” | 8 |
Too many pills | “Plus taking it on top of all the other mediation I take (high blood pressure etc.).” | 6 |
“Too many meds in my system.” | ||
“Started off twice a day moved to once.” | ||
“With the other medications it just does not do me any good.” | ||
Group 8: African-American men (six patients) | ||
Not convinced that the medication is effective and should be taken daily | “It don’t work for me.” | 27 |
“Took Indocin for years that helped. I took allopurinol, didn’t help, I was having more pain while taking allopurinol compared to when I was taking Indocin. Indocin worked better.” | ||
“It took too long to clear up the pain.” | ||
“I would still have flare ups. I had been on it for at least 2 months.” | ||
“If gout has subsided, I did not need to take it, so I stopped.” | ||
Side effects | “Because of the side effects of allopurinol.” | 17 |
“Because of the gout infection in my elbow: My elbow got sore, I was told to take allopurinol, pain got worse, got fluid out of the elbow, diagnosed with infection, told it was due to allopurinol, got antibiotics in the hospital and then at home –have not taken allopurinol since then.” | ||
“The doctor took me off of it due to side effects.” | ||
Cost/Economic impact | “Money- It was Money.” | 12 |
“Have to take a lot of meds, copay went up, have to choose.” | ||
Refill issues | “I forget to refill.” | 11 |
“I threw away my bottle before I calling.” | ||
“Sometimes forget to go and pick up from pharmacy.” | ||
“I have so many meds that I take, its’ not easy (to remember which one is due for refill).” | ||
Forgetting to take the medicine | “Forget to take it.” | 8 |
“Forget to take it on time.” | ||
“Sometimes on the go, can’t take any of my medications.” | ||
“Most of the time, I take my medication after breakfast, if I don’t see the pill box at breakfast, I forget at times.” | ||
Group 9: African-American men (two patients) | ||
Not convinced that the medication is effective | “Doing great without medication.” | 9 |
Refill issues | “Prescription ran out- didn’t fill it.” | 9 |
Competing priorities | “Working all the time.” | 5 |
“I have to get to my jobs and getting to work (keeps me busy).” | ||
Forgetting to take the medicine | “Keep forgetting (to take it).” | 5 |
“…because of other things I have to do.” | ||