Plaque Psoriasis in America: Community Findings Over the Years

While each person's journey is different, and their psoriasis symptoms and treatment experiences may not be the same, there are frequently well-worn paths that are taken and common barriers that are encountered by people living with psoriasis. Health Union, LLC conducted a large survey of people who have Plaque Psoriasis during the first half of 2017 and asked many questions about what it’s like living with a chronic condition that affects people so uniquely. Over 1,000 people completed the survey. Here are the highlights from what our community shared with us. Let's start from the beginning: triggering events For many people with psoriasis, their journey may start with a “triggering event.” More than ½ of survey participants identified a specific incident that coincided with the beginning of their psoriasis symptoms. These precipitating events tended to include physical or emotional forms of stress. Severity levels over time People with psoriasis had differing levels of severity when they were first diagnosed, with 23% reporting severe psoriasis, 31% moderate psoriasis, and 46% with mild psoriasis. People with psoriasis report their current level of severity and symptoms and here we see changes have occurred in level of severity. The current level of severity for survey participants is 37% with severe psoriasis, 36% with moderate psoriasis, and 27% with mild psoriasis. Changing symptom experiences We also see that there is a change of the symptoms that people experience when they are first diagnosed compared to the symptoms they are currently experiencing. More people are likely to experience symptoms that are associated with autoimmune disease (fatigue and pain) when initially diagnosed. With the progression of inflammation, symptoms may change from those that are primarily characterized by skin involvement to including symptoms associated with psoriatic arthritis (thickened, pitted or ridged nails and swollen and/or stiff joints). The daily symptom struggle Over time, people with psoriasis have a broader range of symptoms beyond just the traditional skin symptoms. Skin symptoms are still ever-present and a frustrating part of day to day life with psoriasis. When survey participants were asked how many days during the past week they experienced symptoms, people reported that many of the most frustrating skin symptoms were experienced every single day. Giving life to the psoriasis experience: psoriasis as an animal It is no surprise then that when survey participants were asked to describe their psoriasis as an animal that they chose animals that were prickly or scaley (Snake, Alligator, and Porcupine) or powerful and ferocious (Lion, Bear, Tiger). Remission- what would it mean to you? Psoriasis is an autoimmune disease that causes chronic inflammation of the skin and other body parts and systems, currently, there is no cure. It is, however, possible for people to sometimes go into remission. The goal of many treatment options is to better regulate the body’s immune responses so that people with psoriasis can have longer periods of remission (often described as “clearance”) from their skin symptoms and to reduce the levels of chronic inflammation that may otherwise occur. When we asked survey participants what remission meant to them, many were “unsure” since they said they had never experienced a period of time without skin symptoms...Others shared their expectations. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] You may be familiar with most of the myths and misconceptions about psoriasis; you've probably heard them your whole life. You experienced the stares and whispers strangers make when you're out shopping or doing other chores. In addition to the stigma of psoriasis, for many people with psoriasis and psoriatic arthritis, there are actual physical limitations that often accompany the visible symptoms on your skin. Uncovering the reality of psoriasis Psoriasis has been shown to have an impact on people's daily activities, work, intimate relationships, and other areas of life. In our recent Psoriasis In America survey, people with psoriasis indicated that there are several things they wish others better understood about their health condition and the negative impact on their life: The impact psoriasis has on their overall life (75%) Getting tired and experiencing fatigue more easily (68%) Decreased ability to exercise or participate in physical activity (71%) Psoriasis affects activities of daily life (63%) Decreased ability to fulfill family/household duties/chores (65%) While there have been several studies that show the negative impact in regards to emotional and social life, there has been very little research on the impact that psoriasis has on the ability and time to perform household chores. What does research tell us? One recent study surveyed 262 Finnish patients with psoriasis and psoriatic arthritis1. More than half of the study participants (57.8%) reported difficulties with household chores because of their health condition. Psoriasis affected a wide range of everyday household activities, with physically demanding tasks and those involving contact with water mentioned most often. Most of the survey participants (84.6%) reported that they had to increase the amount of time spent on skincare because of psoriasis by 87 minutes per week. A quarter of study participants reported receiving assistance with their household chores, with women receiving more assistance than men. About 20% of people said they would like more assistance with household chores, again with women stating this more frequently than men. Not surprisingly, study participants' perceived ability to perform chores decreased as the severity of psoriasis symptoms increased. People with mild psoriasis still reported decreased ability to perform household chores, even though this was more pronounced among people with moderate and severe psoriasis. Most people in the study reported developing ways to work around their symptoms and still perform household chores despite their psoriasis symptoms. What household chores seem to be the most problematic? The most common physical symptoms of psoriasis, such as skin lesions and joint symptoms in people with psoriatic arthritis, may cause difficulties and pain when moving and when things touch the skin. As well, the fatigue that many people with psoriasis experience can also impact one's ability to perform household chores daily. Household chores involving water and use of cleaning agents may be additionally challenging because of the concern that with prolonged contact, these may further dry out one's skin or increase potential skin irritation. This may be of particular concern when one is experiencing flare-ups of skin symptoms. Having to reapply emollients or topical medications multiple times in a day because of them washing off due to these chores involving water and cleaning may be a concern. People with psoriasis and/or other people in their household may also have to do extra housework (including extra laundry and washing) because of the messy, greasy treatment and extra vacuuming (including frequent cleaning skin flakes off furniture). In the study referenced above, partners and other relatives of patients with psoriasis spent considerable time helping to apply topical treatments and not just assisting with household chores. Activities of daily living and performing household chores are part of what researchers call the "burden of disease" that needs to be given more attention. This may be an essential hidden need for many people with chronic health conditions like psoriasis. Overall, the ability to routinely perform household chores may be an underreported and under-recognized impact on the quality of life for people living with psoriasis. Researchers and healthcare providers should better identify the range of activities and tasks part of daily life for people with psoriasis. Having additional assistance with household chores could be a way to improve the quality of life for people with psoriasis. What is your experience? Are there particular household chores that you find challenging because of your health condition? Do you receive any additional help from family members for these chores? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],One of the battles of having psoriasis is on any given week your symptoms could flare-up for a day and then subside, or they could rear their head for all seven days of the week. It can be such an unpredictable condition that impacts people so uniquely. While psoriasis signs and symptoms can be different for everyone some common signs and symptoms of psoriasis include: Plaques (red, scaly patches) Itching and burning Cracking and bleeding White pustules Small scaling spots Pain Joint pain and swelling Nail changes Hair loss Dandruff-like flaking How many days in the past week has your skin been...? In our, In America Psoriasis Survey, we asked participants about their experiences with skin-specific psoriasis symptoms. Flaking, skin irritation, and itchiness were the most common skin-specific symptoms that survey participants experienced over the past week. In looking at the frequency of those skin-specific symptoms more than half of the respondents who experienced flaking, irritated or itchy skin, experienced those symptoms all seven days of the week. Percent of participants who experienced skin-specific symptoms all 7 days of the week Flaking Skin Irritated Skin Itchy Skin 70% 63% 62% Cracked Skin Painful Skin Bleeding Skin 44% 40% 14% [poll nexus_id="6397"] [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],

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