Results from survey of psoriasis patients don't look good.

[Fred]

As you know I don't like advertising on here and this could be looked at as a publicity stunt*. But I think it's worth showing as the results, (if correct) don't make good reading.

Quote:

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Novartis presented new findings from the largest global survey to date of people with psoriasis, showing many do not achieve the treatment goal of clear skin or even believe it is a realistic goal. People with the disease also report that they face discrimination, humiliation, and mental illness, according to the research presented at the European Academy of Dermatology and Venereology (EADV) Congress.

While real-world evidence presented at EADV demonstrated that clear skin significantly improves quality of life, the survey found over half (57%) did not achieve clear or almost clear skin, and nearly a third of people (28%) had to wait five years before receiving treatment that resulted in clear or almost clear skin.

"Every patient deserves the opportunity to achieve clear skin, but this research tells us many are not given the chance," said Vasant Narasimhan, Global Head, Drug Development and Chief Medical Officer, Novartis. "Novartis supports the World Health Organization's resolution to make psoriasis a global health priority and help patients overcome the heartbreaking physical, societal and psychological challenges the condition presents."

Over 8,300 people from 31 countries took part in the survey, which aimed to improve the understanding of patients' perspectives on clear skin and, importantly, the impact of not achieving it. This major research initiative represents the largest ever partnership between Novartis and patient organizations, including 25 groups from around the world.

The survey findings reinforce the need for greater education and engagement of healthcare professionals and patients about the achievability of clear or almost clear skin as a treatment goal. In addition, they demonstrate the detrimental impact psoriasis has on patients' lives. The majority of people surveyed (84%) were suffering discrimination and humiliation, while almost half (43%) of patients felt psoriasis had affected their relationships and made it difficult to form intimate relationships.

A third of people (38%) surveyed also reported that they have been diagnosed with a psychological condition due to psoriasis, with one in four diagnosed with anxiety (24%) or depression (25%). Patients with anxiety or depression were also found to suffer more severe disease and worse quality of life in other research presented at EADV, further emphasizing the link between the psychological and physical aspects of the disease.

Source: novartis.com

*I should point out, I'm not suggesting the results are fake. I'm just making a personal statement and not one of Psoriasis Club.
#1 A drug manufacturer sponsored survey could be biased.
#2 Online surveys don't always give a true result as people could tick wrong box's or they could be manipulated.
#3 I don't think drug manufacturers should run what looks like a social media site.

[AmandaL]

You're right, it doesn't make good reading, but I don't think it's far off the truth, but I don't know whether to believe that people are depressed because of their Psoriasis, I just think depression and anxiety is on the rise. 4 of my closest friends are either currently on or have been in the past 2 years anti anxiety or anti depressant medications and none of them have chronic illnesses.

Disclaimer: this is just my personal opinion

[Fred]

You're right, it doesn't make good reading, but I don't think it's far off the truth, but I don't know whether to believe that people are depressed because of their Psoriasis, I just think depression and anxiety is on the rise.  4 of my closest friends are either currently on or have been in the past 2 years anti anxiety or anti depressant medications and none of them have chronic illnesses.  

Disclaimer:  this is just my personal opinion

I agree I think it's close to the truth going by what our member say here, the only problem I have is when a drug company does the survey and it's a tick the box type survey as opposed to being asked at ones dermatology appointment.

As for depression there are indeed many reasons for it, and again one could ask did people tick a box not really knowing if they have clinical depression or not?

You don't have to give a disclaimer Amanda. You are welcome to your opinion and I just put my bit in as I don't usually comment on news reports straight off. I try to keep my reports as independent as possible, but I personally felt the survey could be looked at as a publicity  stunt and as most people know I'm against those sort of things. So I made my comments to point out they are not the thoughts of Psoriasis Club.

Plus it's me they will string up on the yardarm not you.  

[Caroline]

It's interesting and I agree with Amanda that the mainline will be true, but...

31 countries are involved. We already know that the differences between UK, France and the Netherlands are immense, let alone the differences between 31 different countries.

I wonder if they were somehow able to compensate for those differences, otherwise the country where they sell mainly apples will influence the country where they sell mostly pears, let alone for the banana and pineapple countries.
Dumping it all on a pile, call it fruit and than give common statements about it, is likely to disturb the end view.

[Fred]

It's interesting and I agree with Amanda that the mainline will be true, but...

31 countries are involved. We already know that the differences between UK, France and the Netherlands are immense, let alone the differences between 31 different countries.

I wonder if they were somehow able to compensate for those differences, otherwise the country where they sell mainly apples will influence the country where they sell mostly pears, let alone for the banana and pineapple countries.
Dumping it all on a pile, call it fruit and than give common statements about it, is likely to disturb the end view.

Interesting way of looking at it. It's the same here at Psoriasis Club, the majority of our members are European and then USA, but we have members from all over the world.

I've just found this:

Quote:

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Novartis initiated and funded the survey, which was conducted by the market research company Gesellschaft für Konsumforschung (GfK) Switzerland. The survey was supported by a prestigious steering committee of medical experts from around the world. With 8,338 participants, this is the largest global survey to date of people with psoriasis and is the first survey of its kind to focus on what achieving clear skin means to the quality of life for people with psoriasis.

Participants in the survey come from the following 31 countries: Argentina, Australia, Austria, Belgium, Brazil, Bulgaria, Canada, Czech Republic, Denmark, Finland, France, Germany, Hungary, India, Ireland, Israel, Italy, Japan, Mexico, the Netherlands, Norway, Portugal, Romania, Russia, South Korea, Sweden, Switzerland, Taiwan, Turkey, the UK and the US.

But it doesn't give percentages or make it clear if it was an online survey.

[pingu]

I would tend to agree with the general sentiment of the survey based on my experience if most countries are like the UK.

For far too many years I was simply handed repeat prescriptions as it was an easy fix. Only when I demanded better treatmnt/review did I get referrred to proper consultancy and access to better treatment.

I believe it can affect people socially and lead to depression and they should have better access.

Perhaps some countries are better than the UK and no doubt some are worse but there areso man factors that influence psoriasis, diet, climate, stress to name but a few.

[Fred]

I believe it can affect people socially and lead to depression and they should have better access.

Yes and people with psoriasis should be regularly checked for signs of depression too. We are good at hiding our skin and in turn also sometimes good at hiding our thoughts.

[jiml]

Yes I agree although I don't think I ever suffered with depression, but there have beeen times when I have felt depressed ...
I would say that I believe psoriasis shaped my life and the paths I took were usually determined by the disease , career I choose as I could hide behind suits and fully covering clothes. I never participated in sport, although before I developed psoriasis I was a keen swimmer and enjoyed Football ( both ditched as they display too much skin )

I'm sure without psoriasis many of my life choices would have been different ( apart from the marriage) that was a good decision I put that in case the Mrs ever reads this

[Fred]

I'm sure without psoriasis many of my life choices would have been different ( apart from the marriage) that was a good decision I put that in case the Mrs ever reads this

[jiml]

I'm sure without psoriasis many of my life choices would have been different ( apart from the marriage) that was a good decision I put that in case the Mrs ever reads this