Canadian Skin Spring 2022 by Kelman & Associates

COMPLIMENTARY

Spring 2022

VOLUME 13 • ISSUE 1

CANADIAN

The Brain-Skin Connection How mental health and skin conditions are related

Helping skin patients access medications in Canada www.canadianskin.ca The Official Publication of the Canadian Skin Patient Alliance

CLOSE-UP ON PRURIGO NODULARIS THE EczemaQ MOBILE HEALTH APP

SKINfacts New Chair in Ethnodermatology position at the University of Toronto

The University of Toronto (UofT)’s Temerty Faculty of Medicine will be creating a chair in ethnodermatology, an area of dermatology dedicated to how skin conditions appear as well as how they’re diagnosed and managed for people with darker skin types. The role of the AbbVie Chair in Ethnodermatology will be to develop research and new curriculum to help train physicians to better understand how different skin conditions may impact people of colour differently than people with lighter skin types. In an article with the Toronto Star, Dr. Marissa Joseph said that this new position aims to collect new data to allow doctors to more accurately diagnose skin conditions in people of colour. Collecting more diverse data in dermatology could lead to better patient outcomes for people with darker skin types. The director of the division of dermatology at UofT noted that Toronto is a good home for the role since more than half of the city's residents are people of colour.

Using hand sanitizers

Plain old handwashing with soap and water is most effective at fighting germs, according to the Centers for Disease Control and Prevention (CDC). But when you’re on the go, hand sanitizer made with at least 60% alcohol is a good option. Managing the risks of COVID-19 in the last two years has meant that many of us are applying hand sanitizer when entering grocery stores, arriving at medical appointments, etc.

Spring 2022

VOLUME 13 • ISSUE 1

CANADIAN

Spring 2022 • Volume 13 • Issue 1

COMPLIMENTARY

ISSN 1923-0729

The Brain-Skin Connection How Mental Health and Skin Conditions Are Related

Helping skin patients access medications in Canada www.canadianskin.ca The Official Publication of the Canadian Skin Patient Alliance

CLOSE-UP ON PRURIGO NODULARIS THE ECZEMAQ MOBILE HEALTH APP

2 | www.canadianskin.ca | Spring 2022

SUGGESTIONS AND TIPS FOR SKIN PATIENTS AND THEIR FAMILIES

If you regularly use hand sanitizer, you know that this hygiene product sometimes comes with an unpleasant side effect: dry, cracked skin. For those with eczema and those with sensitive skin, the skin barrier is already compromised, increasing inflammation and causing or worsening symptoms including dryness, redness, flakiness, and irritation. That’s why many people follow their hand sanitizer with a moisturizer. Consider keeping a travel-size hand moisturizer with you when you are out and about so you can apply it after you wash or sanitize your hands.

Acne in adults

Acne is an inflammatory skin condition that often occurs during puberty. But acne does affect adults as well. Acne is one of the most common skin conditions in the world. Mild adult acne may consist of blackheads, whiteheads, or small pustules. In its moderate form, adult acne might also include papules, which can appear on the face or body. Severe adult acne often comes with more extreme redness, swelling, irritation, and deep cysts. Nearly all adult acne is caused by inflammation and clogged pores. Fluctuating or excessive male or female hormones can lead to adult acne because of changes they create in the entire body and the environment of the skin. This can lead to a pH imbalance, inflammation, differences in circulation, or excessive production of oil (sebum). Most people don’t get acne because of poor hygiene. The bacteria accumulate underneath the skin and can’t always be reached through surface cleansing. Hormonal fluctuations occur in adult females during menstruation, pregnancy, the postpartum period, breastfeeding, and perimenopause. Hormonal acne is common in women and even more common among women with skin of colour.

Canadian Skin Patient Alliance: 111-223 Colonnade Road South, Ottawa, ON K2E 7K3 Toll Free: 1-877-505-CSPA (2772) • E-mail: info@canadianskin.ca Canadian Publication Mail Sales Product Agreement No 40065546. Printed in Canada.

To subscribe today to this complimentary magazine, call 1-877-505-2772 or email us at info@canadianskin.ca

ASK THE EXPERT

Learn more, live better. A Canadian healthcare professional answers your questions.

Concerns about blue light & nail fungus treatments By Dr. Isabelle Delorme

Q A

Should I protect my skin from blue light of screens?

There have been increased concerns about the effects of blue light on the skin, with the increased use of digital screens and LEDs.

against visible light. They consist of a blend of iron oxides and titanium oxide pigments. Studies show that oral and topical antioxidants may provide visible light protection as well.

Can I paint my nails if I have nail fungus? Can nail polish mix with topical nail fungus treatments?

It depends on which treatment you are using. Currently, there are two prescription topical medicines for the treatment of nail fungus. JUBLIA® (finaconazole) topical solution, 10%, is a prescription medicine used to treat fungal infections of the toenails. Nail polish does not interfere with product absorption. It can be safely used during treatment. PENLAC® (ciclopirox) comes as a solution to apply to nails and the skin immediately surrounding and under the nails. It is usually applied once a day. Do not use nail polish or other nail cosmetic products on nails treated with ciclopirox topical solution.

There are minimal long-term studies surrounding blue light as it is a relatively new scientific interest. It is known that the blue light from the sun is harmful to the skin in the same way that sun exposure is. Many studies have found that the sun emits significantly more blue light than any of the digital devices. Thirty minutes of exposure to the sun is equivalent to an eight-hour exposure to a powerful screen, for five days in a row. Doses from electronic screens are probably too low to significantly change the skin’s appearance. However, for the time being, the potential impact of the cumulative effects of long-term exposure to visible light, including blue light, on the skin is unknown. On the other hand, more attention should be placed on being exposed to sunlight (particularly blue light) passing unfiltered through windows when indoors than from electronic screens. Today, there are ingredients and skincare products that contain broad spectrum UVA/UVB filters. Tinted (coloured) sunscreens, already available, can provide protection

Dr. Isabelle Delorme is a certified dermatologist working in Drummondville, Quebec. Got a question? Send it to info@canadianskin.ca. Spring 2022

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Helping skin patients access medications in Canada BY SABRINA RIBAU AND R ACHAEL MANION, CSPA

Accessing prescription medication in Canada is complicated and overwhelming for many patients, including skin patients. There are many barriers to accessible treatment in Canada: accessing primary care providers like family doctors and nurse practitioners, wait times for specialists, a patchwork of prescription drug coverage available in Canada, and the long process for drugs approved by Health Canada to become available to patients at the pharmacy counter. 4 | www.canadianskin.ca | Spring 2022

Skin patients’ needs For people who have conditions that affect the skin, hair, and nails, accessing effective medical treatment can feel like an uphill battle. Access to a dermatologist in Canada for most people across the country means wait times of several months, and the ratio of Canadians to dermatologists is one of the worst compared to countries with similar resources (www.improveeczemacare. com/dashboard). We know that for some conditions, like hidradenitis suppurativa, people can go about seven years from when their symptoms start until they get a

diagnosis, with about half of these patients making 10 visits to seek medical care for their condition (www.canadianskin.ca/images/ HS_Report/CSPA_HS_Report_ May_22_2020_Final.pdf ). Once you have seen a health care provider and talked about your treatment options, a new journey begins: accessing the medication that can help you. There are many routes for obtaining prescription drug coverage, which include public drug plans (provided by governments), private drug plans, and manufacturers’ patient support programs (or compassionate use programs).

It takes many years for a prescription medication to go from the lab to the pharmacy. Health Canada reviews new drugs and generic drugs to see whether they are safe (or if there are any circumstances where they may not be safe) for patients and whether they do what the manufacturer says they will do (called “efficacy”). Once Health Canada authorizes the drug for sale in Canada, drug plans review the information about the medication to decide whether they want to include it in their formularies (lists of drugs that they will pay for). In their analysis, they look at how it compares to other treatments available for that condition (called “clinical effectiveness”) and their costs (“cost-effectiveness”). For public drug plans offered by the federal, provincial, and territorial governments, this is done by the Canadian Agency for Drugs and Technologies in Health (CADTH) outside Quebec, and the Institut national d’excellence en santé et en services sociaux (INESSS) in Quebec. The CSPA is often involved in these reviews by asking our community about their experiences with these conditions and treatments. Based on the review by CADTH and INESSS, the manufacturer may then negotiate with the panCanadian Pharmaceutical Alliance to come up with an arrangement for adding the drug to formularies, which includes what conditions patients have to meet (perhaps not having their health condition improve on an older or cheaper drug first) and what they will pay.

Finding drug coverage for your best treatment options For these and other reasons, figuring out whether you have prescription drug coverage – or could have it! – depends on many factors: the province where you live, whether you have access to a private insurance plan (through work, school, a professional association, etc.), your age, your family income, and what the prescription would treat. The differences in prescription drug coverage between the provinces and territories results in inconsistent coverage for the same condition across the country. For certain people who frequently move across the country, like military families, some of these changes

“Once you have seen a health care provider and talked about your treatment options, a new journey begins: accessing the medication that can help you.” in provincial plan coverage can impact the care that their family receives. The CSPA has heard from many patients about the difficulties of paying for their medication and has created a new tool to help everyone in Canada answer the question: Is my prescription covered?

Is My Prescription Covered? Is My Prescription Covered? is an interactive drug coverage finder available for free, 24 hours a day, seven days a week, to help you determine if you have coverage for the prescription that you have received. This tool is designed to be used by patients and their families. It can also be used by your doctor, health care and social services workers to help their patients and clients determine whether they have access to prescription drug coverage and if the medication that they need is covered for them. This tool is not specific to skin

patients; it has been designed to be helpful for all patients in Canada. It is the CSPA’s mission to help skin patients access the best care and treatment options for them. Many skin patients cannot afford the medications that they are prescribed. Being able to access affordable, safe, and effective medications for skin, hair, and nail conditions is essential to our health and quality of life. To try out this new interactive drug coverage finder, or learn more, visit www.canadianskin.ca/en.

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Spring 2022

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Close-up on: Prurigo nodularis BY LEILYNAZ MALEKAFZALI

Introduction Prurigo nodularis (PN) is an uncommon, chronic skin condition characterized by firm and intensely itchy lumps. Although the exact cause is unknown, it occurs mostly in patients who experience prolonged itchiness that leads to prolonged scratching. It is known that up to 80% of patients with this condition have personal or family history of atopic dermatitis (eczema), asthma, or hay fever. PN has also been associated with other conditions such as iron deficiency anemia, chronic renal failure, and HIV infection. The itch-scratch cycle is thought to be the cause of the increasing number of nodules (bumps) in PN. That is, the nodules are itchy, causing the patients to scratch the skin more, leading to the formation of more nodules on the skin. Signs and symptoms: • The firm and itchy bumps range in size from a few millimetres to several centimetres in diameter. • The bumps can be the same colour as your skin (for lighter and darker skin types), red, brown, or black. • The bumps are usually grouped together, and the number varies from a few to hundreds.

Images courtesy of Dr. Harvey Lui 6 | www.canadianskin.ca | Spring 2022

• The lesions usually start on the lower arms and legs and affect both sides of the body. They mostly appear on the areas that are easily reached such as the back of the arm, the front of the legs, and the trunk. • Patients experience intense itchiness, stinging, burning, or tingling sensations. Diagnosis The diagnosis of PN is based on the symptoms of the intensely itchy skin, and the characteristics of the nodules. A skin biopsy can be considered if the diagnosis is unclear. Treatment The treatment for PN is difficult, and it is uncommon for it to completely go away even with treatment. The goal of the treatment is to decrease the itchiness and allow the skin to heal. Lifestyle change recommendations: • Keep nails short and avoid scratching. • Wear gloves at night to minimize the consequences of scratching. • Cover the involved area with bandages and dressings. • Use mild cleansers for bathing and showering. • Use emollient creams frequently to moisturize and reduce skin dryness. Treatment options: • Applying topical corticosteroids and then wrapping the affected area is the first-line therapy. • Injecting corticosteroids into the thicker nodules may also be an option. • Other topical treatments: calcipotriol ointment (vitamin D derivative), topical capsaicin, topical calcineurin inhibitors (e.g., pimecrolimus) and cryotherapy with liquid nitrogen. • UV phototherapies can be an option for those who haven’t had success with topical treatments. • Biologics and systemic immunosuppressants. • Thalidomide may be considered in severe cases.

Other therapies that can be used to control itchiness include oral antihistamines, antidepressants, and anticonvulsants such as gabapentin. New treatments are on the horizon for PN. Coping and support Prurigo nodularis is a chronic skin condition that can impact the quality of life of those who have it. Severe itchiness may affect daily activities such as sleep, work, and school. It can also lead to a withdrawal from social activities due to feelings of embarrassment that can come from the stigma related to the appearance of PN. As a result, individuals with PN may develop stress and depression. Nodular Prurigo International provides education and support for patients with this condition. Visit www.nodular-prurigo.org.uk/npi. REFERENCES

Huang, A.M, Williams, K.A, and Kwatra, S.G. Prurigo nodularis. JAAD.2020;83(6): 1559-1565. LeCourt, A.P. Prurigo Nodularis. Medscape. 2020. Available from: https://emedicine.medscape.com/article/1088032-overview. Oakley, A. Nodular prurigo. Dermnet NZ. 2014. Available from: https://dermnetnz.org/topics/nodular-prurigo. Watsky, K. Prurigo nodularis. UpToDate. 2021. Available from: www.uptodate.com/contents/prurigo-nodularis. Williams, K.A, Huang, A.H, Belzberg, M., and Kwatra, S.G. Prurigo nodularis. JAAD.2020;83(6): 1567-1575. Zeidler, C. and Ständer, S. The pathogenesis of Prurigo nodularis – ‘Super-Itch’ in exploration. Eur J Pain. 2015;20(1): 37-40. Zeidler, C., Yosipoivitch, G., and Ständer, S. Prurigo Nodularis and Its Management. Dermatological clinics. 2018;36(3): 189-197.

Leilynaz Malekafzali is a third-year medical student at the University of British Columbia, with a bachelor’s degree in Microbiology and Immunology.

The Brain-Skin Connection How mental health and skin conditions are related

relationship between mental health and skin disease has been explored for many years – the skin makes up such a large part of our outer appearance and can both affect, and be affected by, our mental well-being. Having a skin condition on highly visible areas such as the face or the hands can lead to feelings of self-consciousness and decreased selfesteem, while psychological stress can also exacerbate skin disease.1

By Megan Lam, Dr. Harry Liu, and Dr. Marlene Dytoc Most people with both a skin condition and associated mental health condition can be broadly divided into two categories:2 1. Skin conditions that can lead to worsening of mental health issues (e.g., people with psoriasis developing anxiety due to worsening of symptoms and social stigma) 2. Mental health conditions that can lead to skin findings (e.g., skin-picking disorders, or hair pulling disorders)

Mental health disorders and skin conditions often present hand-inhand. Studies have shown a consistent link between skin conditions and the increased likelihood of mental health conditions, most commonly depression and anxiety.4-5 It is therefore important for everyone, including health care providers and patients, to be educated on the connection between mental health and skin disease, and how they interact.

SKIN FACT:

44% of people suffering from eczema report experiencing depression related to their skin condition, as reported by the Eczema Society of Canada.3 Spring 2022

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Skin conditions and social stigma The highly visible nature of skin conditions can be distressing and impact all aspects of one’s life. People with skin conditions, particularly chronic skin conditions, may experience stigmatization, discrimination, and a negative reaction from others, leading to avoidance of social situations and feelings of isolation and shame.4 For instance, people suffering from genital psoriasis often suffer from feelings of unattractiveness, decreased intimacy with a partner, and even physical symptoms including pain and flareups, which impact interpersonal relationships and contribute to a negative self-image.6-7 For children with visible skin conditions, bullying can lead to significant anxiety and social withdrawal. For both children and adults, some physical and leisure activities can also be affected by skin conditions, particularly those affecting the hands, feet, and skin folds. Whether this is because of reduced mobility, pain, or other symptoms, people with these conditions may be unable to participate in sports or other activities they enjoy, and this can contribute to feelings of loneliness and hopelessness, making mental health issues worse. Cultural considerations add another dimension to the social stigma that patients with visible skin conditions may face. For example, vitiligo presents as a loss of skin pigmentation and can be heavily stigmatized in some cultures, leading to bullying, difficulties finding partners and employment, and other challenges in social or cultural settings. 8-9 The vicious cycle Chronic skin conditions often wax and wane, and stress plays a very important role. Eczema is one such skin condition, and stress can make the itching worse, starting a vicious cycle known as the “itch-scratch cycle,” 8 | www.canadianskin.ca | Spring 2022

where patients may start to scratch at the area due to anxiety or stress, leading to inflammation and irritation, which increases itchiness and ultimately leads to more scratching. In a similar way, anxiety, depression, and other psychological illnesses can make skin problems worse, including acne, psoriasis, and rosacea, which can worsen psychological illnesses by making people feel self-conscious or embarrassed about their perceived appearance. It is thought that stress may actually alter the ability of organisms to pass through the skin and trigger inflammation found in disorders such as eczema and psoriasis.10 Treating the related psychological condition in addition to the skin condition can be helpful in breaking this cycle, particularly for skin conditions that are severe and resistant to traditional therapies.

4. Speak to your health care provider – Connect with your dermatologist or primary care provider to discuss what options are best for you. Psychodermatology clinics can offer access to professionals with specialized training in the field, where dermatologists and psychiatrists often help patients together when needed. Megan Lam is a medical student at McMaster University with an interest in dermatology. Dr. Harry Liu is a dermatology resident at the University of British Columbia. Dr. Marlene Dytoc is an academic dermatologist with expertise on psychodermatology, and a Clinical Professor of Medicine in the Division of Dermatology at the University of Alberta. REFERENCES

How to break the vicious cycle 1. Educate family members and friends – Talking about the nature of your condition and having an open conversation with partners helps to strengthen your support network and improve social understanding.11 For tips on speaking with your loved ones, check out the CSPA’s YouTube channel for advice from a psychologist. 2. Manage stress – Maintaining a healthy diet and regular exercise, as well as practicing mindfulness and counselling, can be helpful.12,13 3. Reach out to a patient support network or association – Having a strong network of people suffering from the same condition and going through a similar experience can help. For more information on organizations that can help with different skin, hair, or nail conditions, you can refer to the CSPA’s list of Affiliate Members on our website (www.canadianskin. ca/affiliate-members/currentaffiliate-members).

1. Kayiran, M.A., Karadag, A.S., Jafferany, M. Psychodermatology of acne: Dermatologist’s guide to inner side of acne and management approach. Dermatologic Therapy 2020;33:e14150. 2. Leon, A., Levin, E.C., Koo, J.Y.M. Psychodermatology: an overview. Semin Cutan Med Surg 2013;32:64-67. 3. Atopic Dermatitis Quality of Life Report: Moderate-to-Severe disease. Eczema society of Canada, 2016/2017 survey results. Available at: https://eczemahelp.ca/wp-content/ uploads/2019/02/ESC_Quality-of-Life-Report_Nov-2017-1.pdf. Accessed Nov. 1, 2021. 4. Hong, J., Koo, B., Koo, J. The psychosocial and occupational impact of chronic skin disease. Dermatologic therapy 2008;21:54-59. 5. All-party parliamentary group on skin. Mental health and skin disease. London, 2020. Available at: www.appgs.co.uk/publication/ view/mental-health-and-skin-disease-2020. Accessed Nov. 1, 2021. 6. Yang, E., Beck, K., Sanchez, I., Koo, J., Liao, W. The impact of genital psoriasis on quality of life: A systematic review. Psoriasis Targets Ther 2018;8:41-47. 7. Ryan, C., Sadler, M., De Vol, E., et al. Genital psoriasis is associated with significant impairment in quality of life and sexual functioning. J Am Acad Dermatol 2015;72(6):978-83. 8. Alghamdi, K.M., Moussa, N.A., Mandil, A., et al. Public perceptions and attitudes toward vitiligo. J Cutan Med Surg 2012;16(5):334-340. 9. Thompson, A.R., Clarke, S.A., Newell, R.J., et al. Appearance Research Collaboration. Vitiligo linked to stigmatization in British South Asian women: A qualitative study of the experiences of living with vitiligo. Br J Dermatol 2010;163(3):481-486. 10. Basavaraj, K.H., Navya, M.A., Rashmi, R. Relevance of psychiatry in dermatology: present concepts. Indian J Psychiatry 2010;52(3):270-275. 11. Tuckman, A. The potential psychological impact of skin conditions. Dermatol Ther 2017;7(Suppl 1):53-57. 12. Woodham, C. Healing your skin with your mind. US News. Available at: https://health.usnews.com/health-news/healthwellness/articles/2015/05/27/healing-your-skin-with-your-mind. Accessed Nov. 8, 2021. 13. Mindful staff. Meditation: Good for the brain, good for the skin too. Mindful. Available at: www.mindful.org/meditation-goodfor-the-brain-good-for-the-skin-too. Accessed Nov. 8, 2021.

What ’s new on the research front? The articles from which these summaries of the latest in skin research are taken are hot off the press!

Top Stories in Research By Sabrina Ribau

Body dysmorphia in common skin diseases Body dysmorphic disorder (BDD) is a type of obsessive-compulsive disorder that affects about 2% of the population. People who have BDD are often concerned about their skin, hair, nose, and stomach area. BDD is associated with a lower quality of life, stress, depression, anxiety, and suicidality. People living with BDD can face high health care costs while trying different treatments that often leave them dissatisfied – sometimes even claiming that the treatment has made their appearance worse. Due to the experiences of skin patients being concerned with the appearance of their skin and the mental health impacts of a changing appearance, a research team from Europe decided to look into the prevalence of BDD symptoms among people with dermatological conditions as compared to their peers without. What they found The team conducted a study with over 8,000 patients from across 17 European countries. All were assessed by a dermatologist and their BDD symptoms were determined using the Dysmorphic Concern Questionnaire. BDD symptoms include being preoccupied with one or more perceived flaws in their appearance, repeatedly checking in the mirror, skin picking, or comparing themselves to others. People who had dermatological conditions experienced BDD symptoms five times more often than their peers in the control group, while those who had hyperhidrosis (excessive sweating), alopecia (hair loss), and vitiligo were more than 11 times more likely to have BDD symptoms. Those with BDD symptoms

were more likely to be younger, female, stressed, and feel stigmatized. Impact on people who have skin, hair, and nail conditions BDD symptoms are significantly associated with skin, hair, and nail conditions. Due to the negative impact that BDD has on patient satisfaction with treatments and the many unhelpful visits with health care professionals, general practitioners and dermatologists should be aware of BDD and refer people who show symptoms to the relevant mental health services for screening and support. Prevalence of depression among children, teens, & adults with HS Hidradenitis suppurativa (HS) is a chronic inflammatory condition that leads to painful lumps and pus-filled bumps typically found in areas where two parts of the body rub against one another, including the armpit, breast, groin, and genitals. Current research shows that having HS can negatively impact other parts of a person’s life besides their skin, including mental and social well-being as well as their overall health. However, there isn’t clear data on how common depression is among people who have HS. A research team from the U.S. set out to see how prevalent, or widespread, depression was in both children and adults living with HS. What they found They looked at a database of over 26 integrated health care networks, 360 hospitals, and more than 920,000 providers. They found almost 40,000 patients with HS who met their study’s criteria. Compared to their control group, adults with HS were usually

female (77%), African American (36%), and smoked tobacco. Among pediatric patients (for this study, ages 10–17), HS patients were mostly female (81%), African American (38%), and obese (59%). Both children and adults who have HS also had over twice as many encounters with health care providers than those in the control group. They found that among adults with HS, 30% had depression whereas only 16.9% of those without HS had depression. In children and teens with HS, 11.7% had depression whereas only 4.1% of their peers in the control group had been diagnosed with depression. Implications for people who have HS Children, teens, and adults who have HS tend to experience depression more often than their peers without HS and are also at a higher risk of developing depression. Family physicians and dermatologists who care for people living with HS should be mindful of the mental health impacts of this condition and consider periodically screening their patients who have HS for depression, and refer them for mental health services when necessary. REFERENCES

1. Schut, C., Dalgard, F.J., Bewley, A., Evers, A.W.M., Gieler, U., Lien, L., Sampogna, F., Ständer, S., Tomas-Aragones, L., Vulink, N., Finlay, A.Y., Legat, F.J., Titeca, G., Jemec, G.B., Misery, L., Szabó, C., Grivcheva-Panovska, V., Spillekom-van Koulil, S., Balieva, F., … Sawińska, E. (2022). Body dysmorphia in common skin diseases: Results of an observational, cross-sectional multi-centre study among dermatological out-patients in 17 European countries. Br J Dermatol. https://doi.org/10.1111/bjd.21021. 2. Wright, S., Strunk, A., & Garg, A. (2022). Prevalence of depression among children, adolescents, and adults with Hidradenitis Suppurativa. J American Academy of Dermatol, 86(1), 55–60. https://doi.org/10.1016/j.jaad.2021.06.843.

Sabrina Ribau, R.Kin, holds a Bachelor of Kinesiology from the University of Toronto and is the Program Manager for the CSPA. Spring 2022

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Living With…

A Skin Condition at Camp In 2009, a group of Canadian dermatologists noticed that their pediatric patients were often unable to fully participate in activities due to the impact of their skin, hair, and nail conditions. They decided to create Camp Liberté, a camp designed for children with skin conditions so that they could have the opportunity to simply be kids and enjoy the magic of a summer camp experience in a safe environment. Camp Liberté is a one-week summer camp for children ages 7 to 14 with moderate to severe skin conditions. The dermatologists who founded the Camp saw the value of kids seeing other

kids who also have skin conditions, as many of them have never met another child with the same or similar condition. While at camp, the campers are cared for by dermatologists, dermatology residents, and nurses 24/7 to tend to their physical and emotional needs while away from home. Much the same as a traditional summer camp, the friendships that can form between campers are special. During the week, the campers can just relax and connect with each other without having to worry about their skin conditions. They spend the time together ziplining, canoeing, kayaking, and playing games, while bonding with the other campers over their shared lived experiences along the way. The Camp provides the children with a safe space to just be themselves, surrounded by other kids who can relate to the challenges of living with a skin condition. Campers often leave with a new sense of confidence that they carry into their lives after camp.

The Camp is a bilingual national camp with three locations – Alberta, Ontario, and Quebec – and it is completely free for the campers, including flights to the camp location.

What this Camp provides children with is so much more than adventures and raised self-esteem, it also provides them with an opportunity to grow as human beings and in newfound friendships. –2019 Camp Liberté parent

Children can attend Camp Liberté by receiving a referral from their dermatologist using a form on the Camp’s website: https://campliberte.ca/camps/referral-process. If you have any questions or have a child who is interested in attending the Camp, please contact info@campliberte.ca.

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A collaborative approach to the development of the

EczemaQ mobile health app

By Nickoo Merati, Charlie Bouchard, Valerie Jack, Gaurav Isola, and Dr. Carolyn Jack

Atopic dermatitis (AD), commonly known as eczema, is not only the most common but also the most burdensome skin disorder worldwide,1-6 affecting 5–10% of adults in high-income countries. Disease activity is unpredictable, and changes daily. Flares of red, purple, or brown inflamed skin are accompanied by extreme itch and open sores, and are associated with Staphylococcus Aureus (commonly known as Staph infections). Symptoms of the itch-scratch cycle worsen at night, making it hard to sleep and affecting daytime concentration, interfering with daily life and work or school, and strongly affecting mental health. This disease is costly, to both individuals and the health-care system Although we don’t have good data for Canada, in the UK, total annual costs are estimated at $800.1 million CAD, with $215 million related to health-care system costs, $511 million related to costs shouldered by patients, and $72 million related to lost productivity.7 In the US, figures for total annual costs range from $462 million all the way up to $4.8 billion.8 We also know that costs per year are nearly double for patients with uncontrolled disease.9 Why is this disease so hard to control? To start, AD varies in terms of where it is located on the body, its appearance on different patients, and in flares over time. That makes it unstable, unpredictable, and, for patients, often unbearable. It’s also not “just a skin disease,” as people living with AD also may live with asthma, hay fever or allergies, and food allergies after the onset of AD (a phenomenon known as the “atopic march”), as well as other conditions including depression and anxiety. The complexity of the disease itself is compounded by a lack of resources for patients as they typically access health care. There is a shortage of dermatologists nationwide; in Quebec, for example, there are just 2.5 dermatologists per 100,000 individuals. This specialty has the highest number of waiting consultations, with 53,000 patients currently waiting to see a dermatologist. When patients do get an appointment, they must share a lot of 12 | www.canadianskin.ca | Spring 2022

information with their doctor and absorb the doctor’s recommendations in a short amount of time, as well as recognize and manage their environmental triggers, the role of the immune system, evolving treatment options, and much, much more. All of this, as well as a full physical examination, is supposed to happen in five to 10 minutes. There is a dire need for resources and tools because the current standard of care is too complex, too timeconsuming, and it’s leading to repeated failures for patients and clinicians. As a result, adult patients are turning to digital resources that haven’t been scientifically proven to help them manage their disease outside of the clinic. However, while many “eczema apps” have come on the market in recent years, research shows that most of these apps do not meet international guidelines or use updated evidence to help people manage their disease.10 Our solution is EczemaQ, an expertvalidated mobile health app developed with a network of physicians from the McGill Center of Excellence for Atopic Dermatitis. This tool was also co-developed with patients from the clinic and the wider public, who were involved at every stage of its development. The app is designed to provide remote access to care and personalized medicine to adult patients living with eczema, empowering patients through shared decision making with their healthcare team and the tools to help them manage their disease between appointments. EczemaQ’s validated educational content is centered around five common patient questions – What, Why, When, What now, and Where – with bite-sized, easy-to-understand educational content on AD. The Body Map feature gives patients the most up-to-date treatment options for eczema wherever they have it on their body, information on dosage, and side effects. The app also features a diagnostic questionnaire, disease tracking using the Patient Oriented Eczema Measure (POEM), a scientifically-tested questionnaire designed for patients to track their own eczema severity, and a dedicated photo gallery and notes feature. This bilingual tool is also available in French.

EczemaQ aims to make appointments more useful and efficient, reduce the patient’s burden of constantly updating their doctor on the multiple changes in their condition, and help patients remotely self-manage their disease. In the long term, the app aims to help patients manage their disease and reduce the immense costs that people with AD face in managing their condition. In spring 2022, this app will be scientifically tested by experts and patients alike, before its release to the wider public with Apple and Android app stores. In the future, the team behind this app plans to explore whether using this tool improves health and quality of life of patients through a randomized control trial and plans to register it as a medical device (software) with Health Canada. To find out more, visit eczemaquebec.com, and keep an eye out for this tool on a phone near you! REFERENCES

1. Hay, R.J., Johns, N.E., Williams, H.C., Bolliger, I.W., Dellavalle, R.P., Margolis, D.J., Marks, R., Naldi, L., Weinstock, M.A., Wulf, S.K., Michaud, C., Murray, C. J.L., Naghavi, M. The global burden of skin disease in 2010: An analysis of the prevalence and impact of skin conditions. J Invest Dermatol 2014, 134 (6), 1527-1534. 2. Silverberg, J.I., Simpson, E.L. Associations of childhood eczema severity: A US population-based study. Dermatitis 2014, 25 (3), 107-14. 3. Barbarot, S., Auziere, S., Gadkari, A., Girolomoni, G., Puig, L., Simpson, E.L., Margolis, D.J., de Bruin-Weller, M., Eckert, L. Epidemiology of atopic dermatitis in adults: Results from an international survey. Allergy 2018, 73 (6), 1284-1293. 4. Flohr, C., Mann, J. New insights into the epidemiology of childhood atopic dermatitis. Allergy 2014, 69 (1), 3-16.

5. Abuabara, K., Margolis, D.J., Langan, S.M. The Long-Term Course of Atopic Dermatitis. Dermatol Clin 2017, 35 (3), 291-297. 6. Abuabara, K., Hoffstad, O., Troxel, A., Gelfand, J.M., Margolis, D.J. Atopic dermatitis disease control and age: A cohort study. J Allergy Clin Immunol 2015, 136 (1), 190-192 e3. 7. Sach, T.H., McManus, E., Mcmonagle, C., Levell, N. Economic evidence for the prevention and treatment of atopic eczema: A protocol for a systematic review. Syst Rev. 2016 May 27;5:90. doi: 10.1186/s13643-016-0262-0. PMID: 27230780; PMCID: PMC4882874. 8. Mancini, A.J., et al. The socioeconomic impact of atopic dermatitis in the United States: A systematic review. Pediatr Dermatol. 2008;25(1):1-6. doi: 10.1111/j.1525-1470.2007.00572.x. 9. Ariëns, L.F.M., van Nimwegen, K.J.M., Shams M., de Bruin, D.T., van der Schaft, J., van Os-Medendorp, H., de Bruin-Weller, M. Economic Burden of Adult Patients with Moderate to Severe Atopic Dermatitis Indicated for Systemic Treatment. Acta Derm Venereol. 2019 Jul 1;99(9):762-768. doi: 10.2340/00015555-3212. PMID: 31073619. 10. van Galen, L.S., Xu, X., Koh, M.J.A., Thng, S., Car, J. Eczema apps conformance with clinical guidelines: A systematic assessment of functions, tools and content. Br J Dermatol 2020;182:444-53.

Nickoo Merati is a MDCM candidate at McGill and an Eczéma Québec collaborator with a special focus on skin of colour. Charlie Bouchard is a co-founder and co-director of Eczéma Québec. She also serves as a patient partner and research coordinator at the MUHC Center of Excellence for Atopic Dermatitis (COE-AD). Valerie Jack is a co-founder and co-director of Eczéma Québec. She coordinates activities and handles external communications. Gaurav Isola is a research assistant and lab manager at the MUHC COE-AD. Carolyn Jack, MD, is an immunologist and dermatologist at McGill; she founded the COE-AD and is a co-founder and co-director of Eczéma Québec. Spring 2022

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CSPA IN ACTION

This year marks the 15th anniversary of the Canadian Skin Patient Alliance. The CSPA has strived to elevate the concerns of people in Canada impacted by hair, nail, and skin conditions, and provide information, support, and resources to help them manage their conditions. We are proud to have built on our annual Shed the Shame mental health awareness campaign this year by working with registered clinical psychologist Dr. Dayna Lee-Baggley to answer questions we hear about the toll on skin patients’ mental health. She shared her expertise in living with chronic illnesses to tackle questions about managing feelings of anger, guilt, and worry, how to deal with staring, and the importance of building a village of support. Check out our YouTube channel to see all her advice! As the song goes, “we get by with a little help from our friends” (or parents, partners, neighbours, cousins, and so on). CSPA is launching a social media

14 | www.canadianskin.ca | Spring 2022

CSPA in action: A spotlight on our latest activities, events and other information of importance to skin patients in Canada

initiative that spotlights family and friend caregivers. We are honouring the memory and example of Tanny Nadon (1941–2016) by recognizing those who go above and beyond in their role of caregiver to an individual impacted by a skin, hair, or nail condition. Check out our website for information about how to nominate someone in your life! People often contact us with questions about how to access a new treatment. We are very excited to launch a new drug coverage finder on our website that can help you answer the question: Is This Prescription Covered? Understanding whether you have coverage for a specific prescription medication depends on whether you have private insurance or are covered by a government drug plan. We have unpacked all these details and will show you to the right spot based on your answers to a series of Yes or No questions. Learn more about how to use this tool

in the article Helping skin patients access medications in Canada in this magazine. This drug coverage finder is the first element of the CSPA’s new SelfEmpowerment Toolkit, which will include many different resources to help you navigate whatever challenges you are facing. Stay tuned as we share with you guides on how to talk to your partner about how to support you, how to talk about your condition with kids, and how to get the most out of your dermatologist appointment. We are proud to support the launch of a report on the challenges of getting a cancer diagnosis in Canada, led by All.Can Canada and CSPA Affiliate Member Save Your Skin Foundation. The report includes information from melanoma and other cancer survivors and caregivers that inspired several recommendations on how our health system can do better for people who suspect they may have cancer before they get diagnosed.

How should you take photos for a successful virtual dermatology appointment?

CSPA AFFILIATE MEMBERS

By Harry Liu, MD (UBC Dermatology Resident)

Acne and Rosacea Society of Canada: acneaction.ca (acne) rosaceahelp.ca (rosacea)

Excellent photos can really help your dermatologist best address your skin concerns during a virtual visit. Dermatologists diagnose various skin conditions based on a few factors, including the location of the lesion on the body (the part of the skin that has an abnormal appearance), its colour, shape, and fine details of the rashes such as overlying scales and crusts. Capturing these factors in your photos as well as you can will help dermatologists to make the most accurate diagnosis. Remember when sending your photos to your dermatologist to be mindful of privacy and confidentiality (you may need to use a secure link provided by your doctor to send photos). 1. 2. 3.

4. 5. 6.

Whenever possible, try to have someone whom you feel comfortable with take the photo for you (e.g., a family member or close friend). To capture the colour of the lesion most accurately, photos should be taken under natural lighting. Avoid strong flashes or warm yellow lights. Find a neutral background with a consistent colour to minimize distractions (e.g., a white wall). Make sure your lesion is fully exposed (e.g., remove jewelry, roll up your sleeves if needed). Position the camera/phone parallel to your skin to accurately capture the shape of the lesion while minimizing any distortion. Tap your phone screen over the area of concern to focus your photos. Take at least two photos: • One full view to capture the body site with the lesion (so your dermatologist can know where the lesion is on your body) • One close-up view to capture the fine details of the lesion Double-check your work. Quality checklist: At least one far-away view and one close-up view are taken. I can tell the body location of the lesion from the photos. The photos are NOT blurry and I can see the fine details of the lesion. The colour and shape of the lesion captured in the photos are accurate (if not, check the lighting and angle of taking the photos).

SPONSOR OF CANADIAN SKIN MAGAZINE AbbVie is the Founding Sponsor of the Canadian Skin Magazine and an ongoing supporter of CSPA’s 2022 publications. AbbVie is not providing editorial support for the magazine. The CSPA is responsible for the final content featured in Canadian Skin.

CSPA CORPORATE SPONSORS

AboutFace: aboutface.ca

Alberta Lymphedema Association: albertalymphedema.com BC Lymphedema Association: bclymph.org Camp Liberté Society: campliberte.ca Canadian Alopecia Areata Foundation (CANAAF): canaaf.org Canadian Association for Porphyria: canadianassociationforporphyria.ca Canadian Association of Scarring Alopecias: casafiredup.com Canadian Burn Survivors Community (CBSC): canadianburnsurvivors.ca Canadian Psoriasis Network: cpn-rcp.com Canadian Skin Cancer Foundation: canadianskincancerfoundation.com Chronic Urticaria Society – Société d’urticaire chronique: en.urticairechronique.ca DEBRA Canada (epidermolysis bullosa): debracanada.org Eczéma Québec: eczemaquebec.com Eczema Society of Canada: eczemahelp.ca Firefighters’ Burn Fund: burnfundmb.ca Hidradenitis & Me Support Group: hidradenitisandme.ca HS Heroes: hsheroes.ca Mamingwey Burn Society: mamingwey.ca Melanoma Canada: melanomanetwork.ca Myositis Canada: myositis.ca Neurofibromatosis Society of Ontario: nfon.ca Save Your Skin Foundation: saveyourskin.ca Scleroderma Association of B.C.: sclerodermabc.ca Scleroderma Canada: scleroderma.ca Scleroderma Manitoba: sclerodermamanitoba.com

CANADIAN SKIN MEDICAL ADVISORS + BOARD MEMBERS + VOLUNTEERS Thank you to the Medical Advisors, Board Members, and Volunteers who support the work of the CSPA. For an updated list of names, visit canadianskin.ca/about-us

Scleroderma Society of Ontario: sclerodermaontario.ca Stevens–Johnson Syndrome Canada: sjscanada.org Tumour Foundation of BC: tumourfoundation.ca

Is My Prescription Covered? Determining what drug coverage is available to you and your family in Canada can feel complicated and overwhelming. The Canadian Skin Patient Alliance has developed Is My Prescription Covered? – an interactive drug coverage finder to help you determine if you have coverage for the prescription you have received. Drug coverage in Canada depends on many different factors, including whether you have access to a private insurance plan through work, school, or a union, where in Canada you live, your family income, your age, and what condition(s) you are using the prescription to treat. We often get questions from patients across Canada asking about drug coverage, and our new tool asks you Yes or No questions to help you answer this question. To try our new prescription drug coverage finder, visit our website: www.canadianskin.ca/is-my-prescription-covered