Regarding the characterization of the 81 participants, most were male (54%), married/living with a partner (70%) and completed elementary education (60%). The mean age of the patients was 50 years and the onset of the disease was at the age of 36. For 61% of the sample, the monthly family income varied between $322 and $879.
From the transcription analysis of the interviews, the central ideas and the key expressions were identified, and the discourses of the three themes emerged from the guiding questions. The following topics are presented with their respective central ideas and patients' DCS.
Theme 1 - Meaning of quality of life
- Financial stability
- Good nutrition
- Do not have stress and concerns
- Be happy
- Having leisure and practicing physical activity
- Being employed
DCS - In my view, quality of life is the ability to live well, being able to go out and walk, to have a good house, leisure and a life ... it is my welfare, to be able to live happily!! I also feel that it is important to feel physically and mentally well ... so I try to eat healthy and exercise. I drink a lot of water and try not to stress about everyday things. I think that a good relationship with everyone is important, besides being honest, having a job that is stable, and to like what you do. Having a close family and faith make all the difference. I do not need a lot of money to have a good life, no!!! For me, quality of life is also having friends, but that is different from person to person, because after we go through some things in life, everything else become less important. If you understand people, quality of life improves, regardless of financial aspects, I think being a bit more human simplifies things because everyone is living very busy lives, so I think if we stop for a moment and think about others, things will improve for everyone. Quality of life is not having disease, or if you have one, is to have the means to treat it, to be able to buy medicine, because many people cannot afford it. And it's not enough just to come to the hospital, but you have to follow the doctor’s recommendations at home too.
Theme 2 - Impact of psoriasis on quality of life
- Symptoms of the disease (pain and itching)
- Behaviour (shame)
- Increased stress
- Frustration and suffering
- Link inseparable from treatment
- Commitment to professional activities
- Stigma of disease
- Restriction on clothing
DCS - It interferes with everything for me. Psoriasis hurts, especially when it is aggravated, and when it itches when I am around others. When I scratch too much, and it's a bother, with the plaques coming off. It's so itchy and addictive, and once you put your hand on it, it does not stop itching anymore. I think when I am inside my house it does not matter, but on the street it is complicated because we are ashamed. I am ashamed of everything, I try to avoid places that have a lot of people, and if someone stares at me, I find myself scratching. You do not have much freedom ... when you are swimming you cannot be comfortable because some people understand, others do not. They think they will catch it. At first, it was difficult because I did not want to wear shorts, people kept looking at me and I felt bad. Today I still cannot wear low-cut clothes, because everyone is looking at, asking what it is ... so sometimes I even prefer to walk in full sleeve, in a blouse, so nobody will ask me any question, because if I try to answer, I think I will come across stupid. I also cannot have big beautiful hair, and because I’m always cutting and tidying it, this bothers me a lot. Even finding work is difficult, and that prevents me from being successful professionally. After all, you still have to be under treatment, and I cannot do other things that I like. We often need injections, spending a lot of time here at the clinic. Every day you have to put ointment on instead of doing other things. Psoriasis takes people out of social life, so we go into depression. It's complicated, I'm really depressed, really down.
Theme 3 - Contributions to improve quality of life in psoriasis
- More efficient drugs
- Clarification of the lay population
- Acceptance of disease
- Possibility of healing
- Treatment adherence
- Have multidisciplinary service
- Stress reduction
DCS - Quality of life could be improved by making other people aware that a person with psoriasis on their skin does not have a disease transmitted by sight, by clothing, by soap, in any way ... Because people stare and are disgusted and scared, but that is a problem that person has. I think that is the reason why a lot of people suffer ... to see the prejudice of others. There comes a time when we stop suffering from these hardships, but for those who are sick at the beginning, they will still have to go through all of this ... Because others look and judge, they are afraid to touch and to be touched. Also, if the treatment advances and they found a cure for it, it would be better, of course ... if you had a medication that would end psoriasis tomorrow, a more direct treatment instead of a weak one. Let's suppose, I'm here today because it's my appointment, but if I did not have to come here, I'd be at work. Now, if I did not have psoriasis, it would be better. It's been a long time since I've had it, that I've lived with it, for about 30 years. With psoriasis, one even forgets what is good. When people do not have this disease it is very good, I still remember how it was... you do not scratch, worry about your appearance, you will be able to be free, going to the beach and pool without thinking. However, I think that this is impossible, that only God can do that at the moment, because for this disease there is no cure. And since this is the reality, what can improve it is to have better control of psoriasis. A control that would minimise the appearance of the lesions on the skin, where there is no more pain. And for this we need to do the right follow-up, more often, because I have a weight problem as well. So, I need an endocrinologist, a nutritionist ... because of the medication, I had side effects in other parts of my body that need to be monitored by other professionals, not just the dermatologist. And not having that makes me a little nervous. This is another thing that would certainly improve quality of life, calm the nerves a bit. It is no use doing the treatment right and not calm down.