Psoriasis: The Patient Perspective
Talk to any patient with psoriasis or any doctor who treats one and they will tell you psoriasis is more than a skin disease. It affects your entire life — your skin, your body, your psyche. Patients are often left feeling isolated, sad, humiliated and angry.
Today experts are recommending a comprehensive, holistic approach to recognizing and considering psoriasis’ effect on the patient’s entire system (See related article).
The Patient Listening Project: New Insights into Your Patient’s State of Mind, sponsored by Novartis Pharmaceuticals Corporation, takes a look at psoriasis from the patient’s perspective and it is one viewers will surely not soon forget.
The Patient Listening Project included 123 US patients with self-reported moderate-to-severe plaque psoriasis to share their experiences living with the disease. Participating patients were asked to answer a series of questions and then complete a collaging exercise designed to uncover the emotional insights of living with moderate-to-severe psoriasis.
The questions asked:
• “What do you wish you could tell your doctor that he or she doesn’t know about you or your condition?”
• “What is the one question you wish your doctor would ask you about your condition, and why?”
Respondents were also asked to complete the following sentences:
• “I wish people would understand this about psoriasis ______”;
• “Psoriasis makes me feel ______”;
• “Psoriasis affects a relationship I have because ______” and
• “The biggest secret I’m keeping about my psoriasis is ______.”
Results of the collaging exercise were included in a traveling exhibit that has been displayed at a variety of events, including the Novartis booth at the 2014 American Academy of Dermatology medical congress.
Patients wrote and created artwork reflecting how psoriasis impacts self-esteem, appearance and relationships. The projects revealed that psoriasis also affects the choices patients make regarding daily activities and tasks, like selecting clothing and bedding (ie, dark colors show more flakes). Hot weather is also a challenge because summer clothing exposes dry, itchy patches. Patients say they often wear many layers or retreat from public to hide their disease. A common theme included patient anguish: “I wish people would understand this about psoriasis… It’s not contagious and to know it doesn’t change me on the inside.”