Speak Clearly: Perspectives on psoriasis

When you’re diagnosed with a chronic disease such as psoriasis, you must come to terms with how it impacts you. Of course, your immediate focus is on symptoms: you may worry about scales, where they are, if others can see them, and so many other things. You have immediate needs and concerns, and it’s important to do everything you can to understand what’s happening.

It starts by talking with your doctor and sharing what you are experiencing. But your discussion with your doctor will also be guided by what you share. This means it will be important to focus your discussion beyond just your current physical symptoms.

Why? Because conditions such as psoriasis can have an ongoing impact in every part of your life—and life isn’t limited to what physically happens. Your life is filled with career pursuits, hobbies, personal relationships, long-term goals, and so much more. Psoriasis can impact all of these areas. Healthcare professionals have coined a new term to describe this idea: Cumulative Life Course Impairment, or CLCI for short.¹

CLCI describes how psoriasis can affect the full course of your life. It’s important to consider your life potential and what you want for your future, because doing this can open more avenues of discussion with your doctor. In the end, it can also help you define a treatment plan that recognizes who you are—not simply what your symptoms are.¹

The Framework: What is “Disease Course,” and Why Is it Important?

You have decisions, experiences and paths that intersect throughout your life. Romantic relationships. Career paths. Decisions about having a family. These are all key moments and decisions that can affect your quality of life. But remember, we’re talking about potential.

Many major life choices and decisions happen early in adulthood. If you are diagnosed with psoriasis at this time, that diagnosis can not only affect your immediate decisions—but also the entire course of your life.² If you are worried about social situations or romantic involvement because you are embarrassed about your psoriasis, you may choose to avoid relationships or put off plans to have a family. That may keep you from achieving your full potential emotionally. If you feel self-conscious about flares, you may miss work or choose work that avoids in-person interaction with others. That may keep you from achieving your full potential professionally.

The choices you make because of your condition may have life-long effects on your emotional wellbeing, your career, your personal relationships, and so much more.¹ This is why it’s important to consider how psoriasis may result in missed opportunities and stand in the way of you living the full life you want.

The Evidence: Is There Data About Long-Term Disease Impact?

Long-term disease impacts aren’t just theoretical ideas. Science has studied and measured them. For instance, studies have shown positive impacts on life potential based on factors such as a balanced diet, physical activity, education, stable employment, and supportive social networks around you.³ Studies have also shown factors with negative effects, including smoking, crime and violence, and drug use.³

Innately, it’s easy to understand how these things influence your life course, your decisions, and your potential. But research also indicates the presence of conditions such as psoriasis have the same lifelong consequences: if you have difficulty adjusting to psoriasis physically and emotionally, you have a greater chance of negative—and possibly irreversible—changes that can take away life potential.¹

A key factor in this is having a strong interpersonal network around you⁴: friends, family members, business associates, and yes, health care partners. Therefore, it’s particularly important to talk about life goals with your doctor. Doing so can help you develop and adjust a treatment plan to meet your long-term goals, as well as develop a strategy to maintain a network of support.

The Future: Expanding the Discussion with Your Doctor

With psoriasis, you can experience ongoing physical symptoms such as itching, discomfort, and even co-morbidities for other conditions such as cardiovascular disease, hypertension, hyperlipidemia, diabetes, and depression.⁵ That means you need to cope with the physical aspects and implications of psoriasis, however it’s also important to cope with the stigma, emotional stress, and social stress tied to these physical symptoms. If you’re not able to, you may be at risk for CLCI, or ongoing impairment of your life course.¹

Treatments are available to help you achieve clear skin and obtain other goals you may have.^6-9 Help is available to guide you in safeguarding your life goals. In fact, just as research shows potential negative impacts if you have difficulty coping, it also shows that shared decision-making on your treatment path (with your doctor), clear life goals, interventions to support those goals, and access to educational resources/support from others can help you live the life you envision.^1,4,10

Learn how you can start the conversation with your doctor about the best management plan for you here.

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References:

1. 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.
2. Bronckers IM, et al. A cross-sectional study in young adults with psoriasis: Potential determining factors in quality of life, life course and work productivity. Journal of Dermatological Treatment. 2018;30(3):208-215. doi:10.1080/09546634.2018.1506077
3. Public Health England guidance 2019: Health matters: Prevention—a life course approach. Available at: https://www.gov.uk/government/publications/health-matters-life-course-approach-to-prevention/health-matters-prevention-a-life-course-approach. Accessed December 2020.   
4. Kimball AB, et al. Psoriasis: Is the impairment to a patient’s life cumulative? J Eur Acad Dermatol Venereol. 2010. doi:10.1111/j.1468-3083.2010.03705.x
5. Ni C, Chiu MW. Psoriasis and comorbidities: Links and risks. Clinical, cosmetic and investigational dermatology. Published April 17, 2014. Accessed July 5, 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000177/
6. Amatore F, et al. Psoriasis Research Group of the French Society of Dermatology (Groupe de Recherche sur le Psoriasis de la Société Française de Dermatologie). French guidelines on the use of systemic treatments for moderate-to-severe psoriasis in adults. JEADV. Published March 2019. Accessed July 5, 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6593704/
7. Gisondi P, et al. Italian guidelines on the systemic treatments of moderate-to-severe plaque psoriasis. JEADV. Accessed July 5, 2022. https://pubmed.ncbi.nlm.nih.gov/28244153/
8. Daudén E, et al. Consensus document on the evaluation and treatment of moderate-to-severe psoriasis: Psoriasis group of the Spanish Academy of Dermatology and Venereology. JEADV. Accessed July 5, 2022. https://pubmed.ncbi.nlm.nih.gov/26812550/
9. Smith CH, et al. British Association of Dermatologists guidelines for biologic therapy for psoriasis 2017. The British journal of dermatology. Accessed July 5, 2022. https://pubmed.ncbi.nlm.nih.gov/28513835/
10. Linder, M.D., et al. Psoriasis - The Life Course Approach. Acta Derm Venereol. 2016 Aug 23;96(217):102-8.

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