Article
The Great Mimickers of Rosacea
Although rosacea is one of the most common conditions treated by dermatologists, it also is one of the most misunderstood.
Rosacea patients experience symptoms ranging from flushing to persistent acnelike rashes that can cause low self-esteem and anxiety, leading to social and professional isolation.1 Although it is estimated that 16 million individuals in the United States have rosacea, only 10% seek treatment.2,3 The motivation for patients to seek and adhere to treatment is not well characterized.
A patient journey is a map of the steps a patient takes as he/she progresses through different segments of the disease from diagnosis to management, including all the influences that can push him/her toward or away from certain decisions. The patient journey model provides a structure for understanding key issues in rosacea management, including barriers to successful treatment outcomes.
The patient journey model progresses from development of disease and diagnosis to treatment and disease management (Figure). We sought to examine each step of the rosacea patient journey to better understand key patient care boundaries faced by rosacea patients. We assessed the current literature regarding each step of the patient experience and identified areas of the patient journey with limited research.
Click here to view the figure as a PDF to print for future reference.
Researching the Patient Experience
A PubMed search of articles indexed for MEDLINE as well as a search of the National Rosacea Society Web site (https://www.rosacea.org) were conducted to identify articles and materials that quantitatively or qualitatively described rosacea patient experiences. Search terms included rosacea, rosacea patient experience, rosacea treatment, rosacea adherence, and rosacea quality of life. A Google search also was conducted using the same terms to obtain current news articles online. Current literature pertaining to the patient journey was summarized.
To create a model for the rosacea patient journey, we refined a rheumatoid arthritis patient journey map4 and included the critical components of the journey for rosacea patients. We organized the journey into stages, including prediagnosis, diagnosis, treatment, adherence, and management. We first explored what occurs prior to diagnosis, which includes the patient’s symptoms before visiting a physician. We then examined the process of diagnosis and the implementation of a treatment plan. Treatment adherence was then explored, ending with the ways patients self-manage their disease beyond the physician’s office.
Prediagnosis: What Motivates Patients to Seek Treatment
Rosacea can present with many symptoms that may lead patients to see a physician, including facial erythema and telangiectases, papules and pustules, phymatous changes, and ocular manifestations.5 The most common concern is temporary facial flushing, followed by persistent redness, then bumps and pimples.6 Many patients seek treatment after persistent facial flushing and an intolerable burning sensation. Some middle-aged patients decide to see a dermatologist for the first time when they break out in acne lesions after a history of clear skin. Others seek treatment because they can no longer tolerate the pain and embarrassment associated with their symptoms. However, patients who seek treatment only account for a small proportion of patients with rosacea, as only 10% of patients seek conventional medical treatment.7 Furthermore, symptomatic patients on average wait 7 months to 5 years before receiving a diagnosis.8,9
Care often is delayed or not pursued because many rosacea symptoms are mild when they first appear and may not initially bother the patient. Patients may not think anything of their symptoms and dismiss them as either acne vulgaris or sunburn. Due to the relapsing and remitting nature of the disease course, patients may feel their symptoms will resolve. Of patients diagnosed with rosacea, only one-half have heard of the condition prior to diagnosis,8 which can largely be attributed to lack of patient education on the signs and symptoms of rosacea, a concern that prompted the National Rosacea Society to designate the month of April as rosacea awareness month.5
With sales of antiredness facial care products growing 35% from 2002 to 2007, accounting for an increase of $300 million in revenue, patients also may be turning to over-the-counter products first.10 Men with rosacea tend to present with more severe symptoms such as rhinophyma, which may be due to their desire to wait until their symptoms reached more advanced stages of disease before seeking medical help.5
Diagnosis of Rosacea
After the patient decides that his/her symptoms are unusual, severe, or intolerable enough to seek treatment, the issues of access to dermatologic care and receiving the correct diagnosis come into play. Accessing dermatologic care can be difficult, as appointments may be hard to obtain, and even if the patient is able to get an appointment, it could be many weeks later.11 For some rosacea patients, the anxiety of waiting for their appointment prompts them to seek support and advice from online message boards (eg, https://www.rosacea-support.org). The long wait for appointments may be attributed to the increased demand for dermatologists for cosmetic procedures.12 Additionally, disparities according to insurance type can contribute to difficulties procuring an appointment. In one study, privately insured dermatology patients demonstrated a 91% acceptance rate and shorter wait times for appointments compared to publicly insured patients who were limited to a 29.8% acceptance rate and longer wait times.11 Many patients then are left to wait for an appointment with a dermatologist or instead turn to a primary care physician. Of patients diagnosed with rosacea in one study (N=2847), the majority of patients were seen by a dermatologist (79%), while the other patients were diagnosed by a family physician (14%) or other types of physicians such as internists and ophthalmologists (7%).6