The impact of gout on a patient’s life extends into many areas beyond severe pain and immobility, causing major problems in social and emotional life as well as work, sleep and daily routine, an Australian study shows.
While gout management guidelines tend to focus on clinical outcome such as pain and gout flares, the outcomes that matter patients include many other aspects of life that stem from these, such as social inconvenience and inability to work or do daily tasks, according to NSW researchers.
In a qualitative study, researchers at 1t Vincent’s Clinical School, UNSW Sydney, Sydney interviewed 17 people with gout to ask them what the disease meant in terms of their day-to-day lives.
As expected, patients reported that the severe pain they experienced during gout flares was the main problem, with some describing it as worse than childbirth. The consequent effect on mobility was also highly distressing, preventing people from walking or even getting up from a chair, as well as preventing them from driving.
Subsequent to the pain and immobility, patients reported a wide range of social and emotional consequences of gout, such as being unable to socialise and becoming dependent on others. The pain and immobility led to increased anxiety and depression – especially from the uncertainty over flares, and emotional problems and soured relationships.
“I’m disappointed with my body. I’m disappointed that I’m not free, that I could at any time get a gout attack, said one participant. “You feel so inadequate that you can’t do things”
“It makes me irritable, and angry a bit, because sometimes people don’t understand what I’m going through,” said another.
Productivity was also negatively affected due to pain and poor mobility, and not just for people whose work or daily routine involved physical tasks, the study found
“I had to cancel quite a few client meetings because I wasn’t up to limping,” said one patient.
Patients said they had to develop physical and mental coping mechanisms, such as using crutches, but also in denying or hiding their illness from family and friends.
Daily activities such as shopping and cleaning were affected by gout attacks, while the extremely sensitive nature of gout pain also made people unable to wear certain clothing or unable to sleep.
“It’s very painful just to put a blanket on,” said one patient, while another stated, “the sheet on the bed kills you.”
The only area where gout impact was less severe was financial, due to the Medicare and PBS systems providing affordable access to urate-lowering therapy (ULT) the study found.
The study investigators said their findings could help guide clinicians in providing more empathetic management of gout by understanding the impact from a patients perspective.
“Current clinical gout education is based upon gout flares; however, the presented findings suggest that patients are also concerned by social, emotional and occupational impacts. This indicates that these impacts should be part of how clinicians discuss gout with patients,” they said.
The findings should also highlight the overlooked consequences of gout such as sleep disruption, they added.
The findings are published in the International Journal of Rheumatic Diseases.