-
it was so nice to meet you today! -
same! how did your appointment go? -
it went ok… he gave me a prescription cream to use but I don’t know much about psoriasis -
honestly, I asked for a dermatologist referral. I want to see a skin expert since I have psoriasis too! you should, too!
How's
Valerie
?
Valerie is devastated to be diagnosed with psoriasis. Will it last forever? she wonders. It might, she thinks, since the lotion doesn’t seem to be working at all.Embarrassed by her skin and trapped in a cycle of anxiety, Valerie begins to cancel plans and stay home. She doesn’t want her friends or coworkers to see her like this.
I just want this to all go away, Valerie thinks.
Cumulative Life Course Impairment (CLCI): Chronic diseases can exert cumulative negative impact along an individual’s life path, resulting in missed opportunities and influencing their ability to fulfill their full life potential. The negative impacts of psoriasis can be substantial.2 Without appropriate management, people with psoriasis are at risk for increased CLCI.2-4
Physical
Valerie has found her symptoms interfering with her sleep. Approximately 34% of people with psoriasis report their condition impacts their sleep.5
Physical
Emotional
For Valerie, hearing she had a lifelong chronic condition negatively impacted her mental health. This is one of the reasons the prevalence of depression, anxiety and suicidality is significantly greater in people with psoriasis than the general population.20,21
Emotional
Social
People with psoriasis are frequently stigmatized and excluded from normal social environments, including schools, workplaces and swimming pools (the last place Valerie wants to be right now).5,12 Many report experiencing loneliness, isolation, feelings of being unattractive and frustration.5,12
Social
Economic
Valerie is worried about how her psoriasis could affect her career. Nearly 60% of people with psoriasis report missing an average of 26 days a year of work due to their psoriasis.22
Economic
How's
Valerie
?
Valerie is upset—how much time had she wasted not seeing a specialist from the beginning? How many pounds had she gained avoiding the gym and staying isolated (and sedentary) at home?
I wish I could go back in time and request that referral earlier, she thinks. Then maybe I’d have a clue what I was doing and how I can feel like myself again.
Physical
Emotional
For Valerie, psoriasis is more than skin deep. More than 90% of people with psoriasis say their condition impacts their emotional and social life.5
Emotional
Social
Economic
Valerie is worried about how her psoriasis could affect her career. Nearly 60% of people with psoriasis report missing an average of 26 days a year of work due to their psoriasis.22
Economic
Dermatologist
Visit
1
The dermatologist confirms Valerie’s first diagnosis of psoriasis and adds, “It looks like it could be a moderate case. Would you want to try a stronger cream?”
Stronger sounded better to Valerie, so she accepts. But why doesn’t she feel more confident?
How's
Valerie
?
Months go by with no improvement, and Valerie’s self-esteem drops into depression. Her partner breaks up with her after she cancels their vacation—the truth is, she didn’t want him to see the skin flakes she would shed in the bed overnight.
Valerie thinks once or twice about reaching out to her dermatologist. But the more time that goes by, the less she wants to. Nothing seems to help anyway. This is just something I need to deal with myself, she thinks.
Physical
Valerie is frustrated that she isn’t seeing progress with her current management plan. People with psoriasis tend to underestimate the amount of time a therapy can take, expecting completely clear skin in about a month.25
Physical
Emotional
Social
Stigma can have long-lasting psychosocial consequences, including stress, fear of rejection, social isolation, school/work absenteeism and failed relationships, like Valerie’s latest one.5,12,26
Social
Dermatologist
Visit
2
“I booked this telehealth appointment because I needed to talk to you sooner,” Valerie begins. After explaining the lack of improvement in her physical symptoms, she shares she was lonely and scared. It was hard for her to even reach out, and she’s been losing touch with everyone lately.
The dermatologist nods on the screen and says there is another option she could try, one better suited for Valerie’s moderate to severe disease.
Severe? Now I have severe psoriasis? How can this get worse? She thinks as she hangs up the call.
The dermatologist nods on the screen and says there is another option she could try, one better suited for Valerie’s moderate to severe disease.
“What frustrates me the most was not knowing all the options I had for managing my disease. If I was told or learned sooner, I may not have had to wait and suffer in the process.”
– IFPA
-
happy holidays! -
thx -
how are you? -
i’m ok psoriasis still flaring. at least it’s sweater weather, right? -
oh no! i am on a different plan to manage my psoriasis and it’s making a real difference -
you should try to see a psoriasis specialist—you need to tell them how you feel! my derm is the best, i’ll email you her info -
hey, did you ever get the info i sent last week? let me know if it works out!
How's
Valerie
?
After months of withdrawal, Valerie finally makes a public appearance at her family’s annual New Year’s dinner. Her cousin pulls her aside.
“Valerie, I see you struggling. My friend with psoriasis has been seeing a dermatologist who specializes in psoriasis and says nothing but great things. She will listen to you. Please go.”
More unsolicited advice is the last thing Valerie wants. She has her doubts, but she trusts her cousin.
Physical
Emotional
Valerie’s cousin recognizes her depression. The prevalence of depression, anxiety and suicidality is significantly greater in individuals with psoriasis, and individuals with psoriasis score lower in mental health than those with many other chronic conditions, including diabetes, arthritis and hypertension.31,32,33
Emotional
Social
Economic
Dermatologist
Visit (again)
1
Itch. Itch. Scratch. Valerie is fidgeting in the exam room.
“I see you’re itching quite a bit,” the dermatologist says. “How are your physical symptoms impacting your life?”
Valerie has never been asked that before. It is the beginning of a good conversation in which she finally says out loud that she wants to feel like her true self again. On her way out, she realizes that she finally feels heard.
How's
Valerie
?
“Psoriasis is all I think about,” she says tearfully to the dermatologist on the phone. “I am still getting flares. I’m distracted at work, wondering if my coworkers are judging me. I’m judging me. I feel like a failure.”
Her dermatologist says it is good she reached out and that Valerie should come in as soon as possible to discuss more and get to the root of her concerns. Something about this time feels different to Valerie—in a good way.
Physical
Valerie may not realize it, but seeing some physical improvement of symptoms may not be enough. Despite having almost clear skin (approximately 75% clear), individuals may continue to experience a negative impact.34
Physical
Emotional
Valerie didn’t find it easy to tell her dermatologist that she wasn’t happy with her current management plan—but with more than 50% of people with psoriasis reporting dissatisfaction with their disease management plan, it’s important to speak up.35
Emotional
Social
Economic
Valerie’s job has been the last thing on her mind lately. If the cumulative burden of psoriasis is managed inadequately, long-term effects include difficulty improving work prospects, reduced working capability/productivity and limited earning potential.3
Economic
Dermatologist
Visit
2
“Let’s talk about you,” her dermatologist
begins, and Valerie knows she made the
right choice in speaking up. They speak
about the impact of psoriasis on Valerie’s
life and her priorities for what needs to
improve, working together to develop
goals.
The dermatologist takes the time to
explain different options and recom-
mends one that could both help Valerie
achieve her goals and work with her
lifestyle. He enrolls Valerie in a patient
support program to get her continued,
personalized care.
How's
Valerie
?
As her skin clears, Valerie is finding her life improving in more ways than the mirror. She is beyond happy she found a good dermatologist who took the time to speak about her goals.
Even though Valerie now sees clear skin when she looks at her reflection, she will always remember what it felt like to want to hide away from the world with worry about the next time her psoriasis would flare. What opportunities did psoriasis take from her? She’ll never know—she can only move forward.
Physical
Valerie’s clear skin has been associated with greater health-related quality of life and increased satisfaction compared to almost clear skin.34,39,40
Physical
Emotional
Valerie’s fear of losing her clear skin has a higher psychological burden now that she’s experienced it. Losing progress from clear skin can make an individual more anxious than losing progress from almost clear skin (PASI 90) to not as clear skin (PASI 75).41
Emotional
Social
Achieving clear skin can lead to improvements in the social anxiety Valerie experiences, including skin-related embarrassment, relationship problems and sexual difficulties.34,39,40
Social
Economic
Joining a patient support program can help save Valerie money—one study showed 23% lower 12-month medical costs for those enrolled in a patient support program than those who were not.19
Economic
No Two People with Psoriasis Have the Same Tale
The impact of someone’s individual psoriasis experience can touch all areas of their life—for their entire life.5 Because psoriasis impacts so many different parts an individual’s life, achieving disease management goals, like clear skin, could lead to an improved life path.36 Timely and successful collaborative disease management between an individual and their dermatologist is needed to help limit their risk for increased CLCI—and improve their chances for a happier ending.2-5,27
The next step is in your hands:
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Copyright © 2021 AbbVie Inc.
Serena’s Tale
Serena communicated what she wanted from the start—a disease management option that would help her get her groove back. She did her research and spoke up about seeing a psoriasis specialist. With her dermatologist, she was able to set goals about what she was looking for from her management plan—from the start. While the first option her dermatologist put her on wasn’t a fit, she and her doctor continued to evaluate her goals beyond just skin—like making goals on the soccer field. Those open conversations together meant Serena was able to get on a therapy that worked for her. Now clear, Serena is committed to helping other people feel empowered to speak up.
Valerie’s Tale
Doubt, low confidence and lack of understanding plagued Valerie from her diagnosis. Her disease worsened, and Valerie began losing the relationships and activities that made her life great. The emotional and psychological effects of untreated psoriasis grew larger as Valerie bounced between doctors and therapies. Finally, she was recommended a psoriasis specialist who took the time to ask Valerie about what she really wanted to get out of her disease management beyond just skin. Newly empowered and aligned with her doctor on goals, Valerie was finally able to work with her dermatologist to find a plan that made a difference—but the years and burdens it took to get there have a cost.
References
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- Kimball, A.B., et al. Psoriasis: is the impairment to a patient's life cumulative? J Eur Acad Dermatol Venereol. 2010 Sep;24(9):989-1004.
- Ros, S., et al. Cumulative life course impairment: the imprint of psoriasis on the patient's life. Actas Dermosifiliogr. 2014 Mar;105(2):128-34.
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- Khalid, J.M., et al. Treatment and referral patterns for psoriasis in United Kingdom primary care: a retrospective cohort study. BMC Dermatol. 2013 Aug 19;13:9. doi: 10.1186/1471-5945-13-9.
- Menter, A., et al. Guidelines of care for the management of psoriasis and psoriatic arthritis: Section 1. Overview of psoriasis and guidelines of care for the treatment of psoriasis with biologics. J Am Acad Dermatol. 2008 May;58(5):826-50.
- Feldman, S.R., Approaching psoriasis differently: patient-physician relationships, patient education and choosing the right topical vehicle. J Drugs Dermatol. 2010 Aug;9(8):908-11.
- Feldman, S.R., Horn, E.J., et al. Psoriasis: Improving adherence to topical therapy. JAAD. 2008 Dec; 59(6):1009-1016.
- Richards H.L., Fortune D.G. and Griffiths C.M. Adherence to treatment in patients with psoriasis. JEADV. 2006 Apr; 20(4): 370-379.
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- Fujii RK et al. Value in Health. 2012;14(4):A107.
- 12 IPSOS - EU5 Therapy monitor Q4 2019 – PsO patients.
- Elewski, B., et al. Psoriasis patients with psoriasis Area and Severity Index (PASI) 90 response achieve greater health-related quality-of-life improvements than those with PASI 75-89 response: results from two phase 3 studies of secukinumab. J Dermatolog Treat. 2017 Sep;28(6):492-499.
- Wahl, A.K., Moum, T., et al. Psoriasis Patients’ Knowledge about the Disease and Treatments. Dermatology Research and Practice. vol. 2013, Article ID 921737, 7 pages, 2013. doi:10.1155/2013/921737.
- Patel, R., Chang, T., et al. Social Media Use in Chronic Disease: A Systematic Review and Novel Taxonomy. Am J Med. 2015 Dec;128(12):1335-50. doi: 10.1016/j.amjmed.2015.06.015. Epub 2015 Jul 6.
- Wald, H.S., Dube, C.E., et al. Untangling the Web—The impact of Internet use on health care and the physician–patient relationship. Patient Education and Counseling. 2007 Nov; 68(3):218-224.
- Rubin, D., et al. Impact of a Patient Support Program on Patient Adherence to Adalimumab and Direct Medical Costs in Crohn's Disease, Ulcerative Colitis, Rheumatoid Arthritis, Psoriasis, Psoriatic Arthritis, and Ankylosing Spondylitis. J Manag Care Spec Pharm. 2017 Aug;23(8):859-867.
- McCormick H.L. Am J Manag Care 2016;22:s104–7.
- Nicholas M.N., Gooderham M. Skin Therapy Lett. 2017;22:1–4.
- Finlay, A. and Coles, E. The effect of severe psoriasis on the quality of life of 369 patients. Br J Dermatol. 1995 Feb;132(2):236-44. doi: 10.1111/j.1365-2133.1995.tb05019.x.
- Strober B., et al. Comorbidities of psoriasis have an independent effect on impairing patient health-related quality of life and work productivity. AAD 2009. San Francisco, California.
- Lebwohl, M., et al. Impact of PASI response on work productivity and the effect of risankizumab on indirect costs using machine learning in patients with moderate-to-Severe psoriasis. J Dermatolog Treat. 2021 Apr 25;1-26. doi: 10.1080/09546634.2021.1919287.
- Gorelick J, Shrom D, Sikand K, et al. Understanding treatment preferences in patients with moderate to severe plaque psoriasis in the USA: results from a cross-sectional patient survey. Dermatol Ther (Heidelb). 2019;9:785–797
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- Kimball A.B., et al. Increased economic burden associated with moderate to severe psoriasis compared with mild psoriasis. AAD 2010. Miami, Florida.
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- Pariser D., et al. A multicenter, non-interventional study to evaluate patient-reported experiences of living with psoriasis. J Dermatolog Treat. 2016;27(1):19-26.
- Kurd, S.K., et al. The risk of depression, anxiety, and suicidality in patients with psoriasis: a population-based cohort study. Arch Dermatol. 2010 Aug;146(8):891-5.
- Rapp, S.R., et al. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol. 1999 Sep;41(3 Pt 1):401-7.
- Viswanathan, H.N., et al. Measurement Properties of the Psoriasis Symptom Inventory Electronic Daily Diary in Patients with Moderate to Severe Plaque Psoriasis. Value Health. 2017 Sep;20(8):1174-1179.
- Armstrong, A. W., et al. Undertreatment, treatment trends, and treatment dissatisfaction among patients with psoriasis and psoriatic arthritis in the United States: findings from the National Psoriasis Foundation surveys, 2003-2011. JAMA Dermatol. 2013 Oct;149(10):1180-5.
- Armstrong, A.W., et al. From the Medical Board of the National Psoriasis Foundation: Treatment targets for plaque psoriasis. J Am Acad Dermatol. 2017 Feb;76(2):290-298.
- Smith, C.H., et al. British Association of Dermatologists guidelines for biologic therapy for psoriasis 2020: a rapid update. Br J Dermatol. 2020 Oct;183(4):628-637. doi: 10.1111/bjd.19039.
- Gulliver, W., et al. Think beyond the Skin: 2014 Canadian Expert Opinion Paper on Treating to Target in Plaque Psoriasis. J Cutan Med Surg. Jan-Feb 2015;19(1):22-7. doi: 10.2310/7750.2014.13151.
- Takeshita, J., et al. Patient-reported outcomes for psoriasis patients with clear versus almost clear skin in the clinical setting. J Am Acad Dermatol. 2014 Oct;71(4):633-41.
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- Abrouk, M., et al. The impact of PASI 75 and PASI 90 on quality of life in moderate to severe psoriasis patients. J Dermatolog Treat. 2017 Sep;28(6):488-491.
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