Dear readers,
Last year, 2022, we have set World Psoriasis Day, into an action day with all our partners, trying to get more awareness for psoriasis.
Our goals were given to our partners and our community:
- As a healthcare professional, show your support for World Psoriasis Day
- Show that you support World Psoriasis Day as a person with or without psoriasis
- Show off on social media with a filter/photo that supports your world psoriasis day
For that purpose we made simple posters. Like shown here.
Our pharma partners, printed this poster on a banner and when visiting their customers, the hospitals dermatology etc. they took the poster with them and took pictures of the different teams in the hospitals.
They themselves afterwards have posted those pictures on LinkedIn, there were a very lot of them. I will put some in this report.
We Psoriasispatiƫnten Nederland ourselves have instructed our volunteers and our members to make the same type of pictures and post them on the social media they are member of. This aspect could have been better, but still some of them did this. So we also were available on several social media like Facebook and Instagram.
From several pharma contacts we heard that they were very satisfied and enthousiastic regarding this simple and cheap campaign, it gave them a good reason for an extra visit and make this visits extra relaxed and basis for good conversations
We also printed flyers with the same front as the banner and sent this together with our magazine to our members, with the request to put it in their windows or go to your health centre and let them hang it in the window. The backside of the flyer we printed the following message:
World Psoriasis Day
This year, during World Psoriasis Day, we are reflecting on the impact of psoriasis on (the quality of) life. Psoriasis is more than just the skin. In addition to the well-known flakes and discolorations of the skin, about 30% of people also have complaints of the tendons and joints. Many people also have to deal with feelings of shame, stigmatization and many people hide their places. So much so that some people refrain from participating in social activities or even work because of this.
We find this topic in various studies:
Health-related quality of life (QoL) encompasses the physical, psychological and social functioning and well-being of patients. [WHOQOL Group 1993] Psoriasis can be accompanied by severe psychosocial complaints and a negative impact on QoL. [Krueger 1998] The QoL in patients with psoriasis is comparable to the QoL of people suffering from conditions such as cancer, diabetes and depression. [Rapp 1999] Kimball et al. reported that psoriasis affects all aspects of QoL, including physical, psychological, social, sexual, and work-related functioning. [Kimball 2005] The perceived QoL does not correlate one-to-one with disease severity as is often estimated by the physician. [Sampogna 2004] Kimball et al. therefore propagate looking at QoL in determining the effectiveness of a treatment. [Kimball 2005]
In a systematic review (17 studies were found that showed that psoriasis patients reported physical discomfort, reduced emotional functioning, negative physical self-image and limitations in daily activities, social contacts and work. [de Korte 2004] Also, more severe degree of psoriasis was associated with a reduced QoL A study of 492 patients with chronic skin conditions (including atopic eczema and psoriasis) found a prevalence of itching and fatigue of 50%, of which 25% were severe [Verhoeven 2007]. You can read stories from real people with psoriasis on our website. And what the impact of psoriasis is on their lives. Stories that touch us. Stories of shame, of not doing things, of struggle, of not being able to fit in treatments.
The current NHG standard mentions the question about the impact on the (quality of) life when taking anamnesis: In addition, inquire about the influence of the complaints or limitations as a result of the skin abnormalities on daily activities (household work), work or school/study ( limitations, absenteeism), personal level (dealing with relationships, friends, sexuality) and leisure activities.
Please help us to discuss the impact of psoriasis. By asking the patient with psoriasis that question above in the doctor's office? How are you now? Does psoriasis affect your life? Will you show your support for World Psoriasis Day? Then hang this poster in your practice or post it online on social media. More information can be found on our website via the QR code on the front.