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The Rosacea Patient Journey: A Novel Approach to Conceptualizing Patient Experiences

Cutis. 2015 January;95(1):37-43

References

1. Baldwin HE. Systemic therapy for rosacea. Skin Therapy Lett. 2007;12:1-5, 9.

2. Drake L. Rosacea now estimated to affect at least 16 million Americans. Rosacea Review. Winter 2010. http://www.rosacea.org/rr/2010/winter/article_1.php. Accessed December 11, 2014.

3. Rosacea as an inflammatory disease: an expert interview with Brian Berman, MD, PhD. Medscape Web site. http://www.medscape.org/viewarticle/722156. Published May 27, 2010. Accessed December 11, 2014.

4. HealthEd Group, Inc. Rheumatoid arthritis patient journey map. http://visual.ly/rheumatoid-arthritis-patient-journey-map. Accessed December 19, 2014.

5. Wilkin J, Dahl M, Detmar M, et al. Standard classification of rosacea: report of the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea. J Am Acad Dermatol. 2002;46:584-587.

6. Elewski BE. Results of a national rosacea patient survey: common issues that concern rosacea sufferers. J Drugs Dermatol. 2009;8:120-123.

7. Del Rosso J. Management of rosacea in the United States: analysis based on recent prescribing patterns and insurance claims. J Am Acad Dermatol. 2008;58:AB13.

8. New survey reveals first impressions may not always be rosy for people with the widespread skin condition rosacea. Medical News Today Web site. http://www.medicalnew today.com/releases/185491.php. Updated April 15, 2010. Accessed December 12, 2014.

9. Shear NH, Levine C. Needs survey of Canadian rosacea patients. J Cutan Med Surg. 1999;3:178-181.

10. Sweeney C. In a perfect world, rosacea remains a problem. New York Times. April 24, 2008. http://www.nytimes.com/2008/04/24/fashion/24SKIN.html?pagewanted=all. Accessed December 12, 2014.

11. Alghothani L, Jacks SK, Vander HA, et al. Disparities in access to dermatologic care according to insurance type. Arch Dermatol. 2012;148:956-957.

12. Resneck J Jr. Too few or too many dermatologists? difficulties in assessing optimal workforce size. Arch Dermatol. 2001;137:1295-1301.

13. Rosacea Research & Development Institute Web site. http://irosacea.org/misdiagnosed_rosacea.html. Accessed December 19, 2014.

14. Crawford GH, Pelle MT, James WD. Rosacea: I. etiology, pathogenesis, and subtype classification. J Am Acad Dermatol. 2004;51:327-341.

15. Elewski BE, Draelos Z, Dreno B, et al. Rosacea—global diversity and optimized outcome: proposed international consensus from the Rosacea International Expert Group. J Eur Acad Dermatol Venereol. 2011;25:188-200.

16. Del Rosso JQ, Baldwin H, Webster G. American Acne & Rosacea Society rosacea medical management guidelines. J Drugs Dermatol. 2008;7:531-533.

17. Fowler J Jr, Jackson M, Moore A, et al. Efficacy and safety of once-daily topical brimonidine tartrate gel 0.5% for the treatment of moderate to severe facial erythema of rosacea: results of two randomized, double-blind, and vehicle-controlled pivotal studies. J Drugs Dermatol. 2013;12:650-656.

18. Aksoy B, Altaykan-Hapa A, Egemen D, et al. The impact of rosacea on quality of life: effects of demographic and clinical characteristics and various treatment modalities. Br J Dermatol. 2010;163:719-725.

19. Dahl MV, Katz HI, Krueger GG, et al. Topical metronidazole maintains remissions of rosacea. Arch Dermatol. 1998;134:679-683.

20. Thiboutot DM, Fleischer AB, Del Rosso JQ, et al. A multicenter study of topical azelaic acid 15% gel in combination with oral doxycycline as initial therapy and azelaic acid 15% gel as maintenance monotherapy. J Drugs Dermatol. 2009;8:639-648.

21. Boehncke WH, Ochsendorf F, Paeslack I, et al. Decorative cosmetics improve the quality of life in patients with disfiguring skin diseases. Eur J Dermatol. 2002;12:577-580.

22. Jackson JM, Pelle M. Topical rosacea therapy: the importance of vehicles for efficacy, tolerability and compliance. J Drugs Dermatol. 2011;10:627-633.

23. Wolf JE Jr. Medication adherence: a key factor in effective management of rosacea. Adv Ther. 2001;18:272-281.

24. Managing rosacea. National Rosacea Society Web site. http://www.rosacea.org/patients/materials/managing/lifestyle.php. Accessed December 19, 2014.

25. van Zuuren EJ, Fedorowicz Z. Lack of ‘appropriately assessed’ patient-reported outcomes in randomized controlled trials assessing the effectiveness of interventions for rosacea. Br J Dermatol. 2013;168:442-444.

26. Del Rosso JQ. Advances in understanding and managing rosacea: part 2: the central role, evaluation, and medical management of diffuse and persistent facial erythema of rosacea. J Clin Aesthet Dermatol. 2012;5:26-36.

27. Davis SA, Lin HC, Yu CH, et al. Underuse of early follow-up visits: a missed opportunity to improve patients’ adherence. 2014;13:833-836.

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29. Tools for the professional. National Rosacea Society Web site. http://www.rosacea.org/physicians/index.php. Accessed December 19, 2014.

Management

The last part of the journey is disease management, which occurs when the patient learns how to control his/her symptoms long-term. Important factors contributing to long-term control of rosacea flares are medication adherence and avoiding lifestyle triggers.^23,24 Through the other stages of the journey, the patient has learned which treatments work and which factors may lead to exacerbation of symptoms.

Educating Patients on the Journey

The patient journey is a concept that can be applied to any disease state and brings to light roadblocks that patients may face from the initial diagnosis to successful disease management. Rosacea patients are faced with confusing and aggravating symptoms that can cause anxiety and may lead them to seek treatment from a physician. Facial flushing and phymatous changes of the nose can be mistaken for alcohol abuse, leading rosacea to be a socially stigmatizing disease.¹⁵ Because rosacea involves mostly the facial skin, it can disrupt social and professional interactions, leading to quality-of-life effects such as difficulty functioning on a day-to-day basis, which can be detrimental because patients usually are aged 30 to 50 years and may be perceived based on their appearance in the workforce.³ A lack of confidence, low self-esteem, embarrassment, and anxiety can even lead to serious psychiatric conditions such as depression and body dysmorphic disorder.²⁵ Because the severity of rosacea increases over time, it is important to educate patients about seeking early treatment; therefore, understanding and awareness of rosacea symptoms are necessary to prompt patients to see a medical professional to either confirm or refute the diagnosis.

Rosacea is a clinical diagnosis that relies on patterns of primary and secondary features, as outlined in a 2002 report by the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea.⁵ Even with this consensus grading system, it appears that additional fine-tuning of the criteria is needed in the disease definition. Importantly, because much of the pathogenesis and progression of rosacea is still not completely understood, there is no laboratory benchmark test that can be utilized for correct diagnosis.¹⁴ Moreover, many of the clinical manifestations of rosacea are shared with other conditions, and patients may present with different symptoms or varying combinations.²⁶

Treatment of rosacea is multifactorial and behavioral, as patients must not only be able to obtain and adhere to oral and topical regimens and possible procedures but also avoid various lifestyle and environmental triggers and learn to cope with emotional distress caused by their symptoms. Although patients who discontinue use of medications appear to be in the minority, education is still needed to stress the chronic nature of rosacea and the importance of the continuation of treatment. Collaboration between the physician and patient is needed to determine why a certain medication may not be effective and explore other treatment options. Treatment ineffectiveness could be due to incorrect use of the product, failure to use an adjunct skin care regimen, or inability to control rosacea triggers. Adequate early follow-up also is needed to maximize patient adherence to treatment.²⁷ Working together with the patient to develop a treatment plan that can be followed is necessary for long-term control of rosacea symptoms.

There is little information on how to address the psychological needs of patients, but patients can find support from various avenues. For instance, the National Rosacea Society, a large advocacy group, produces newsletters and educational materials for both physicians and patients.^28,29 There also are online support groups for rosacea patients that have thousands of members who exchange stories and provide words of encouragement. Although there are not many face-to-face support groups, physicians may consider developing live support groups for their rosacea patients. As patients achieve the later stages of the rosacea patient journey, they hopefully will have controlled their symptoms by following a treatment regimen and learning to adapt to a new life of successful disease management.

Many aspects of the rosacea patient journey have yet to be explored. It is uncertain how long patients with symptoms of rosacea wait before seeking treatment, what methods they use to control their rosacea before they receive a prescribed treatment or physician recommendations, and how they react to their diagnosis. It also is unknown how many rosacea patients receive an initial misdiagnosis of another condition and which physicians typically make the misdiagnosis. We also need to know more about the role of psychological issues in addressing patient adherence to treatment. Similarly, what role do support groups such as online forums play on adherence? There is a need for more patient education and awareness of rosacea.