Table 2 Top ranked seven concerns* for African-American and Caucasian women

African-American women (n = 3)

Constant pain

‘Having to continue day to day tasks even with constant painʼ

9

Interactions with other medications

‘I have high blood pressure and my gout medication would raise my blood pressure. The same issue with my diabetes medicationʼ

9

‘Medical doctors say don't take something that the rheumatologist said would help my gout because it would mess up other thingsʼ

Concern and confusion regarding dietary restrictions

‘You get different lists when you Google this question. It says that everyone has to find what starts the attack for themʼ

7

‘Red meat and some fish…ʼ Any fish? ‘…(avoid) Dark green leafy vegetables.ʼ

‘I don't notice foodʼ

‘Unsure of what and what not to eatʼ

Joint swelling with discomfort and deformity

‘This is a social aspect because I get self conscious because my feet are so swollen.ʼ

5

‘Residual swelling in joints constantly in feet, unable to wear my shoesʼ

‘My hand swells. I can't put my rings on some morningsʼ

‘Supposed to have a brace on my hand for the swelling. I may have to have surgery on the handʼ

‘(Swelling)… on top of my foot or my big toeʼ

‘Swelling in my shins and everywhere!!!ʼ

Severe pain

‘As soon as you take your foot of the bedʼ

5

‘Can't even have the cover touching my feet.ʼ

‘Can even just lay there and still have painʼ

Concern about taking too many pills

‘I am taking more pills than I would like to take to get rid of the pain and get any kind of sleepʼ

3

Problem with daily activities, at-home productivity and dependency on family during gout flares

‘When I have an attack, I can't walk; can’t take care of my family, my home or myselfʼ

2

‘I can’t get to bathroom, cook wash, or go to the storeʼ

‘I didn't care if anything was done because the pain was so severe. I also didn't know what it was. I couldn't walk they thought it could be a stress fracture until the blood work was reviewed. You are so concerned with pain you can't do anything. I would literally scream every time I would put my feet down. The first attack was in my shoulder I could not move it. I was given morphine and it was still hurting

‘The prednisone makes me hold fluid. I have asked to be taken off of it; leaving me taking medicine I would not like to takeʼ

‘Can’t walk it's so painful; I have to use crutches hop on one leg or crawlʼ

‘During an extreme onset unable to walk at allʼ

‘Can’t clean the houseʼ

‘Family can't take care of my grandchildren properly. I have an ADHD child I have to keep up withʼ

African-American women (n = 8)

Extreme pain

‘Hurts when I lay on my side at nightʼ

26

‘Sleepless nights when I get an attackʼ

‘It’s in my foot - it's hard to walk - I can't put on any shoes or touch it like a sheet or anything like thatʼ

‘I can't stand for nobody to touch it… my feet when I have itʼ

‘When it flares it's very painful. It causes me not to move itʼ

‘My feet feel tender it makes me walk different. Like I'm hoppingʼ

‘Affects my life very very bad… It's sorer than anything else. I cannot walk. All I can do is hop to the bedʼ

‘Sudden sharp pains in legs, thighs, and foot during and between attacksʼ

‘I just woke up and couldn’t have anything touching meʼ

Swelling and heat in the area of attack

‘I have hurting and swelling in my right kneeʼ

21

‘It's in my hands and knee right now they are treating it with cortisoneʼ

‘Causes swellingʼ

‘Affected area is hotʼ

Constant pain

‘I am in constant painʼ

15

‘It never stops hurtingʼ

‘Even when you don't have a flare up it does not stop hurtingʼ

Problem with daily activities and at-home productivity

‘Walking long distances - it hurtsʼ

15

‘Can’t run, periodʼ

‘Can’t get up quicklyʼ

‘My gout is in my right hand so it hurts when I writeʼ

‘I have problems dressing myself because of the problems with swelling and painʼ

‘Affects things that I have to do around the houseʼ

‘I can’t walk when I get an attackʼ

‘Can’t do a lot of walkingʼ

‘Gout 3-4 times a year - and it hurts so bad I can't walk, or stand for the sheets to even touch itʼ

‘Sudden sharp pains in legs, thighs, and foot during and between attacksʼ

‘I had to limit my volunteeringʼ

‘Limits my going out of townʼ

Stiffness in joints

‘I had stiffness in my right kneeʼ

11

Problem with shoes/footwear

‘Causes me to wear a certain type of shoes… definitely no open toe shoesʼ

8

‘I cannot wear shoes at all when it flares upʼ

‘I go to church with house shoes onʼ

‘I used to love to wear heelsʼ

Work productivity

‘I had to stop working - due to goutʼ

7

Diet changes

‘The food that I eat will make my gout flareʼ

6

‘I have to be careful about what I eat even the medications that I takeʼ

‘Restrictive dietʼ

‘I won't eat anything when I go out somewhere because I am afraid the food might flare up my goutʼ

Emotional impact

‘I cry a lot because it hurts really badly when I have an attackʼ

6

African-American women (n = 7)

Problem with daily activities and at-home productivity and dependency

‘The way it affects my life is it affects my ability to walk around and move around all day. And due to the severity of swelling I'm not allowed to wear shoesʼ

26

‘I can't go up and down the steps like I would likeʼ

‘Can't comb hairʼ

‘It affects me because I can't walk. When it flares up I can't walk at all. I will be in the bed for a while. I can't stand to put your foot on the pillowʼ

‘I could stand there and watch my feet start swellingʼ

‘Swelling of my hands makes it hard to open anything. I have to ask the neighbor for help sometimes. It’s hard to lift a skillet or any kind of pot or panʼ

Problem with shoes/footwear

‘Hard to move and wear shoes on my feet no matter what kind or size. It's like it's hard to lift the shoe. I will be bed ridden can't get up and go

19

‘Had to get support stockingsʼ

‘Most of the time I have to be barefootʼ

‘Mine flares up and I have a lot of pain. I can't wear flat shoes I have to wear a little wedge shoes so that my feet will be going down so I can walkʼ

Gout flare pain

‘Very painful and it makes it hard to drive. Sometimes you can't drive at allʼ

13

‘When mine flares in my foot I can't even let the sheet touch itʼ

‘When I am walking my feet will swell. Then my in-step starts aching like a toothache. It makes me cry. It's like you want to pop the joint, but it won't popʼ

‘Sharp pain in toeʼ

‘Loss of appetite during a flare. You end up losing weight because of thisʼ

‘You’re in so much pain you can't eatʼ

My ability to sleep

‘My ability to walk stand and sleep. I toss from side to side. It keeps me up all the time day and night…especially during flaresʼ

13

Need for canes and crutches

‘Need for canes crutches and walkers -you feel so swollen you feel like you don't have any balance. I have fallen all over the placeʼ

8

Eating restrictions

‘Be choice-y about what I eat. I can't eat beef, red meat and seafood.

4

‘You get tired of eating chicken all the timeʼ

‘Can’t drink alcohol especially beerʼ

Work productivity

‘Causes problems with work. I had to stop working and I was put on disability.ʼ

4

‘I was constantly on my feetʼ

Crippling effect of flares

‘It cripples youʼ

4

‘Can’t get out of the bed for a monthʼ

‘Can’t get to the bathroomʼ

‘Gout destroyed my finger ligamentsʼ

Joint pain and stiffness

‘I have it all over my bodyʼ

4

‘It’s in hips legs back of head armsʼ

‘(Aches and pains)… constant - all the timeʼ

‘Aches and pains and stiffness and numbness in joints all the timeʼ

‘Have to rock to get upʼ

Caucasian women (n = 6)

Unpredictability of flare that brings a normal day to a halt

‘Unpredictable and can strike at any time. It ruins any plans. I'm a liability to my family because they never know what to expectʼ

22

‘Can’t make plans to do anything’

‘When I was having it so much. My daughter would call to ask me to babysit. It's like we both knew I couldn’t do it because we didn't know if when the time came I would be able to do itʼ

‘Makes life iffyʼ

‘You never know when it is going to comeʼ

‘Just walking though Wal-Mart and then you are limping to get outʼ

‘When the episodes are frequent in the feet I can't make plans because I can't be sure that I will be wellʼ

Work productivity

‘When the gout is in the heel, I can't walk at all. So I can't get any work done or go anyplace. When it's in the toe I can walk but with pain difficult doing most things but I can do mostʼ

16

‘I was not able to fix Easter dinnerʼ

‘Problem with Walking or exercise of any sort - It is hard to just walk through the house -I live alone and during a flare up I can't even get to the bathroomʼ

‘Activities that you would like to participate in. Ex. You can't walk so you more or less hit the sofa. This for me is exerciseʼ

‘It came out in the hand… So I could not writeʼ

Dependency

‘I live alone… (am worried) when am I going to get the next flare upʼ

9

‘My husband had to do it allʼ

Medication side effects

‘The medication for gout causes other problems such as diarrhea, itching, difficulty breathingʼ

7

Modification in physical activity due to gout and to avoid flares

‘Must be careful the need to take extra cautionʼ

7

‘Must be careful with activities and walking because any misstep, uneven pavement, large gravel can cause insult and precipitate goutʼ

‘If I didn't have gout I could walk like everyone elseʼ

‘You end up taking different routes than everyone elseʼ

Problem with shoes/footwear

‘Shoes do not fit appropriately because of the foot bump from many attacksʼ

5

‘ I had to change my shoes. I can't wear fancy shoes anymoreʼ

Deformity

My nail Bed is deformed. I have a deformity.

5

Pain interfering with sleep

‘It wakes me up. I want to sleep when I go to sleep but it hurts too badly to sleep. Can't touch the sheet or the bed to my footʼ

5

‘You’ll be sound asleep and the pain will wake youʼ

‘I just put my foot off of the bedʼ

‘You twist the foot to get it in just the right position but nothing worksʼ