Disease Is Not Just Physical
How understanding the social, psychological, and emotional experience of psoriasis is fueling pharma
By Eliot Salandy Brown
ReD’s anthropologists normally dress in a relaxed manner when meeting people we’re going to study. It relaxes us and it relaxes them. But the day I met Richard was so hot that I dressed down even by our standards – shorts and open shoes seemed the only way to remain sane and get through our first day together without leaving patches on his furniture.
Despite the heat, Richard greeted me at his front porch covered from head to toe in thick dark clothes fit for a wintry hike. Richard was participating in a project about psoriasis, a condition that leaves the skin irritated, red and flaky. It’s a disease that effects 1-3% of the population and for which patients report unusually low satisfaction with medical treatments. Richard was not the first patient I had met who had decided to cover up the effected parts of their skin, but his decision to hide everything other than his face suggested his case was particularly severe.
Later in the afternoon as we sat sipping iced-tea in his shaded garden he said that he wanted to show me the worst effected parts of his skin, but that I needed to be ready for a shock, “ready to be disgusted”. He slowly and tenderly rolled up his trousers to reveal…. almost nothing. Normal legs with very slight redness to the skin on his left knee. Looking at me apologetically he then even more delicately rolled up his sleeves and… healthy toned arms with light hair and the odd characterful freckle. Almost no psoriasis at all as far as I could see.
Richard’s struggle with psoriasis started when he lost his job. Within weeks red itchy patches had appeared on his hands and elbows. He confided that within months he had become so embarrassed by his condition that he was avoiding friends, hiding when his daughter had guests over to the house, and turning down interviews for new positions. Richard’s struggle with psoriasis was clearly as much social and emotional as a biological. More than his biological condition, his self-consciousness regarding how others would perceive his objectively minor symptoms was “ruining [his] life”.
Building on ReD’s ethnographic study of the condition, the results of a global quantitative investigation of nearly 2,000 psoriasis sufferers was recently published in the Journal of the European Academy of Dermatology and Venereology1. The study’s main finding confirmed ReD’s: “the experience of the disease is as much a psychological, social, and emotional experience as a physical one”1.
There were many long burning questions in the medical/pharmaceutical minds that diagnose, treat, and innovate around psoriasis before the study – Why don’t sufferers always seek medical care? Why do sufferers report low satisfaction with the doctors they consult? Why don’t sufferers stick with and finish their prescribed medication? Why do sufferers report low satisfaction with treatments proven to be effective in trials?
The answer to all of these questions lay in better understanding the non-physical experience of the disease. Patients felt doctors talked about psoriasis as a minor condition, when it was seriously compromising their lives. Contrary to some assumptions in the medical community, no psoriasis sufferers studied were lazy in trying to solve their condition, but many didn’t want to see a doctor due to their embarrassment about their symptoms. The emotional expectations of finally having found a cure in a new cream were often so high, that after a matter of days and only minor improvements patients would judge a product ineffective and cease using it. Patients’ descriptions of their journeys with doctors and drugs often amounted to a tale of insult, disappointment, and ultimately rejection.
By exploring, respecting, and acting on the the non-physical dimensions of disease revealed by the studies, the medical community and pharmaceutical industry is now seizing powerful opportunities to innovate around psoriasis. They’re developing new ways of informing, engaging, and treating a condition that patients, like Richard, are desperate to cure.
1. Identifying individual psychosocial and adherence support needs in patients with psoriasis: a multinational two-stage qualitative and quantitative study
A. Bewley1,*, D. M. Burrage2, S. J. Ersser3, M. Hansen4, C. Ward5
Article first published online: 13 MAY 2013 – DOI: 10.1111/jdv.12174
© 2013 The Authors Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of the European Academy of Dermatology and Venereology.
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