African American men (n = 5)
|
Impact of flare on social life
|
‘Affects my social life - Going to dinner, church, movies, etcʼ
|
10
|
‘I don’t want to be around anybody during the attackʼ
|
Pain during and after the flare and its impact
|
‘…(flare causes)…extreme painʼ
|
9
|
‘Crying while I am in painʼ
|
‘It makes me emotional and mean when I have an attackʼ
|
Limitation of recreational activities
|
‘Things that I like are taken away (music)ʼ
|
6
|
‘I can’t go (places…) with my brothersʼ
|
‘Affects my hobbies - fishing, hunting, biking, playing music, riding motorcycle, runningʼ
|
Work productivity
|
‘Hopefully your boss understandsʼ
|
6
|
‘Relationships are hard at work tooʼ
|
‘Caused me to take off from (or ability to do) my job.ʼ
|
Unpredictability of flare that brings a normal day to a halt
|
‘Brings normal day to a haltʼ
|
5
|
‘Stopping the desire to do anythingʼ
|
‘Comes unexpectedʼ
|
‘Don’t even want someone breathing around meʼ
|
Dietary restrictions and modification
|
‘What do different foods contribute to gout?ʼ
|
5
|
‘Staying away from fish, shellfish, steaks, & peasʼ
|
‘Affects foods I can enjoyʼ
|
‘Always have to watch what I eat - staying disciplinedʼ
|
Feeling of loss of youth
|
‘I was diagnosed in my 20s… feel old…
|
5
|
‘Causes me to feel “old” before my timeʼ
|
African American men (n = 9)
|
Severe pain and disability during an attack
|
‘When I have an attack it shuts down my whole life. I can't function. I will stay in the bed three to four days while I wait for it to passʼ
|
36
|
‘Have to have wheel chair close to me during an attackʼ
|
‘I have to keep my crutches by the bed so that I can get to the bathroomʼ
|
‘You will do anything to get reliefʼ
|
‘I miss going to church and other functionsʼ
|
Swelling and tenderness in acute flare
|
‘My toe ankle and knee they really swell up.ʼ
|
16
|
‘…tenderness in the acute phaseʼ
|
Affects sleep
|
‘Limits my ability to have a good night sleepʼ
|
16
|
‘You just can't sleepʼ
|
Dietary restrictions and modification
|
‘Affects what I can eatʼ
|
14
|
‘Can’t have a few drinks without a flareʼ
|
‘Can't eat red meat, even though I love itʼ
|
Need for daily medication
|
‘…have got to take medication every dayʼ
|
11
|
‘I have to take additional medications to stay wellʼ
|
‘It’s inconvenientʼ
|
‘It’s just another drug when you add that to our other medicationsʼ
|
‘I also have to take a pain medicationʼ
|
At-home productivity and dependency on family members and others
|
‘It disables me. I need help with my socks or just walking around the houseʼ
|
9
|
‘I can't use lawn mowerʼ
|
‘Need help from family and othersʼ
|
‘During a flare up I need help just to get me to the doctorʼ
|
‘One time the fire department had to find a way to get me out of the bed, into a wheelchair, into the back of a truck then to the hospital… It took a whole lot of help to get to the doctor that dayʼ
|
‘I can't do anything someone will have to bring me food, help me in and out of the bed; hop to the bathroom during an attackʼ
|
Affect on family life and sexual function
|
‘I can’t go to my grandson’s gameʼ
|
9
|
‘I can't do the things I like to do with my wifeʼ
|
‘My relationships are affected… I don't want anyone around me to touch meʼ
|
African-American men (n = 9)
|
Dietary restrictions and modification
|
‘Made me change my dietʼ
|
24
|
‘I had to change the food that I ateʼ
|
‘I can’t eat seasoned food; I did not like that at allʼ
|
‘No seafood, shell fish, red meat and fried foodsʼ
|
‘Watch what you drink - no alcoholʼ
|
‘Can’t have sodas or drink orange juiceʼ
|
‘Can’t have peanuts, pecans and tomatoesʼ
|
Problem with daily activities
|
‘Hard to move aroundʼ
|
18
|
‘Very hard to move around during a flare. It stays with me for a while, several daysʼ
|
‘Could not stand and it would hurt if the cover was touching itʼ
|
‘Have to be careful what you can doʼ
| |
‘No activity outsideʼ
|
‘It's aggravating, not being able to do anythingʼ
|
‘All you want is the pain to go awayʼ
|
‘Gout affects my drivingʼ
|
‘During the flare there is a problem going to the restroomʼ
|
‘I couldn't drive my truck if my gout was flaring. I had to learn to shift with my left foot. My diet, activities and everything had to change because I could not do it like I used toʼ
|
Sexual difficulties
|
‘Problem with having sex during the flare. When you are in pain… the love goesʼ
|
14
|
‘You don't want to do anything when you are in pain. Our old lady doesn't understandʼ
|
Problem with shoes/footwear
|
‘I wore a wider shoeʼ
|
14
|
‘I had to get shoes 2 sizes largerʼ
|
‘Needed hard leather shoes and loose fitting shoesʼ
|
‘Get out of the fancy shoes and wear some soft shoesʼ
|
‘I wear sandalsʼ
|
Joint swelling
|
‘Affects my joints - I have swellingʼ
|
12
|
‘I will have small swelling in my feetʼ
|
Life-changing impact
|
‘Made my life change in a lot of waysʼ
|
9
|
‘My whole life changed. I had to accept a lot of things that I did not want toʼ
|
‘Pain made me change in a lot of ways with my friends family and the people that I am normally around. It will have an impact on the way your carry yourselfʼ
|
Severe pain during flare
|
‘Can’t have anything touching it a sheet, clothes… nothing.ʼ
|
9
|
‘…when it flares up you can't sleepʼ
|
‘I have to sleep a certain way to avoid painʼ
|
‘I have to sleep in a chairʼ
|
Emotional impact
|
‘Can’t play with painʼ
|
7
|
‘Makes me irritatedʼ
|
Caucasian men (n = 5)
|
Problem with daily activities and at-home productivity
|
‘Gout affects my physical abilitiesʼ
|
17
|
‘I can't garden or do yard work anymore. Can't do vegetable gardeningʼ
|
‘Work around the house is impossible when I have a harsh gout attackʼ
|
‘…(during flare)… My sink is full of dishesʼ
|
‘Standing is a devil (during flare).ʼ
|
‘My inability to walk and move around totally limits my life (to go to the bathroom, eat do anything)ʼ
|
Impact on family life and sexual function
|
‘Affects your sex lifeʼ
|
10
|
‘My life with family has sufferedʼ
|
Work productivity
|
‘My work output suffersʼ
|
8
|
‘I get paid on commission. My average has dropped over the years due to goutʼ
|
‘Affects my job. A limitation to the jobʼ
|
‘The medication (narcotics) has made it difficult to workʼ
|
Long-term medication side-effects
|
‘Affects your personality usually due to the medication that you are taking (steroids)ʼ
|
7
|
‘I worry about the long term affects the drugs have on my healthʼ
|
‘The side affects that I have or could get from the medication or the diseaseʼ
|
‘My joints are deteriorated due to me continuing to move during a flare upʼ
|
‘Because I have one kidney my pain reliving drugs are even more limited“
|
Impact on comorbidity management
|
‘How it (gout) interacts with my other health issuesʼ
|
6
|
‘Raises blood pressureʼ
|
‘That's my problem - I do not know how it is affecting my other problems. I ask my doctor all the timeʼ
|
Dependency on family members
|
‘I don't like to be waited on… they should not have to bear that burdenʼ
|
5
|
‘I have to have help when I am having a severe attackʼ
|
‘Concern over being dependent on my wife and family because of my limitationsʼ
|
Makes traveling very tricky
| |
5
|
Caucasian men (n = 7)
|
Intense pain
|
‘Gout leads to severe painʼ
|
24
|
‘Attack in the unusual placesʼ
|
‘Unable to live the active life tat I liveʼ
|
Gout stops certain activities
|
‘Limited movementʼ
|
18
|
‘….couldn’t walkʼ
|
‘Inability to exercise, have family interactionsʼ
|
‘..(had to) reduce daily activitiesʼ
|
‘Limitation of mobilityʼ
|
Not predictable
|
‘Don’t you wish you knewʼ
|
18
|
‘Can not plan activities in town and out of townʼ
|
‘Out of town, can not get medical attention quick for an attackʼ
|
Need for daily medication
|
‘Take medication everyday and buy itʼ
|
12
|
‘If you travel you are stuck with themʼ
|
‘…(problem) having to take daily medicationsʼ
|
Expenses of medications and doctor visits
|
‘I have group health insurance and my condition has impact on othersʼ
|
8
|
‘Limitation of disposable incomeʼ
|
‘….emergency room visits are expensiveʼ
|
Lack of healthiness
|
‘….contributes to the sense of lack of healthinessʼ
|
6
|
Possible drug interactions
|
‘Lot of unexplained symptoms, wondering if they might be due to side effects of allopurinolʼ
|
6
|
‘We are getting older and need to worry about theseʼ
|
‘What about it’s effect on medications for other diseasesʼ
|
Caucasian men (n = 3)
|
Severe pain
|
‘Pain was so much, I could hardly walkʼ
|
11
|
‘I broke my leg an year ago, I swear gout hurt worse than my fractureʼ
|
‘I broke my ankle, not even comparable to acute gout attack (gout was worse)ʼ
|
‘Pain from gout was worse than neck fusion symptomsʼ
|
‘I can feel the pain with every heartbeatʼ
|
Physical limitation
|
‘Limits my ability to play sports, family events and excursions, vacation, home improvement and choresʼ
|
12
|
‘Limits sporting events during the attackʼ
|
‘Could hike, if it weren’t thereʼ
|
‘Has long-term impact on hobbiesʼ
|
‘I had to give up sports I played my whole lifeʼ
|
‘Had to so “no” a lotʼ
|
‘Had an attack during vacation. I couldn’t do things and make me think of polioʼ
|
Emotional impact
|
‘Puts emotional strain in relationships, marriage and familyʼ
|
7
|
‘People have heard about it, but don’t know what it isʼ
|
‘It led to my divorceʼ
|
My wife said in her journal “… seems that he wants to be in pain to avoid doing things with meʼ
|
‘My family and wife know very well what gout isʼ
|
Limits work ability
|
‘Limits my ability to workʼ
|
6
|
‘Delay, reschedule or ask coworkers (ask for help)ʼ
|
‘Traveling is difficultʼ
|
‘Can’t driveʼ
|
‘….had to get cherry juice and spend a night in a hotelʼ
|
Need to take daily medication
|
‘Have to take medication dailyʼ
|
4
|
‘Not easy to fill and refill, especially when travelingʼ
|
‘I don’t like taking medications every dayʼ
|
‘Allopurinol if a miracle drugʼ
|
Awareness of joint disease
|
‘Constantly cautious of joint sensitivityʼ
|
4
|
‘Anytime I feel something it constantly reminds me of my attacksʼ
|
Finding fellow people with gout
|
‘Bond with people who know how it feelsʼ
|
1
|
‘Becoming part of social interactionʼ
|
‘Every friend of mine knows I have goutʼ
|