What are PROs?
Patient-reported outcomes (PROs) are assessments of patient health. They can be symptom- or disease-specific or ask about general health or overall quality of life. Hundreds of PROs have been developed to better understand the impact of disease on patients’ physical, mental and emotional health as well as their quality of life.
The vast majority of PROs in the medical literature have only rarely been used after initial publication. When they are used, PROs are primarily used for epidemiology studies or for clinical trials. In 2009, the U.S. Food and Drug Administration (FDA) issued guidance for the use of PROs in clinical trial research. Since then, pharmaceutical companies have become increasingly involved in developing and testing PROs for specific diseases.
A few dermatologists and dermatology departments have made PROs a routine part of clinical care. Some dermatologists have their patients complete PROs on paper and scores are entered manually into the electronic medical record (EMR). Only recently has the technology progressed to where PROs can be collected electronically and automatically integrated into the patient’s EMR.
How can PROs help?
The typical dermatology visit is brief, usually scheduled at 10-15-minute intervals, with the face-to-face time with the dermatologist even less. It can be difficult for patients to describe and dermatologists to appreciate the broad-ranging impacts of symptoms and disease appearance on their patients’ quality of life.
Have you ever left your doctor’s appointment with unanswered questions or unaddressed problems? Have you ever wondered how to bring up difficult or embarrassing topics to your doctor that are important to you? Do you ever feel alone in taking care of your health because your cares and worries are not usually discussed during your visit?
Some of the hardest questions that patients have about their skin disease go beyond physical symptoms. Quality of life can be significantly impaired by skin disease, and many patients do not know what to do or how to address what really matters to them. Our research has shown that quality of life issues in dermatology patients include:
Physical appearance
Relationships with family and friends
Comfort with being in public
Self-confidence/embarrassment
Mental health
Clothing choices
Soap and cosmetic choices
Food choices
Limitations with work and hobbies
Exercise and recreational activities
The emotional impacts of all these experiences can leave patients feeling embarrassed and unhappy, and for some, this leads to problems with depression and social isolation. We recommend that dermatologists regularly screen for depression, because depression can make it harder for patients to treat their skin condition.
How do PROs help patients?
PROs help clinicians by providing much more information than can be gleaned during a quick clinic visit about how their patient’s skin condition is affecting them. Skin conditions, especially chronic issues like eczema, acne or psoriasis, can affect all aspects of patients’ lives. While most visits focus on identifying and managing symptoms, the emotional and functional impacts can be as or more bothersome to patients. Acknowledging these can help clinicians better understand their patients’ struggles with their skin condition and help to optimize the ideal treatment plan. We have listed examples of how PROs have changed care here.
While nearly all patients can discuss their skin symptoms with their dermatologist, some patients feel they cannot bring up certain details about their condition, and this limits what their clinician knows about the real impact of their skin condition. PROs empower patients to address their problems by providing an indirect way to communicate these non-obvious concerns with their doctor. Conversations on the basic causes and treatments of a disease are often not enough. PROs help patients and their clinicians address problems that may otherwise be left unaddressed and improve patient satisfaction with their care.
Finally, in the words of Dr. Bob Swerlick at Emory University, “I’ve been treating patients how I felt they needed to be treated, not how they themselves needed to be treated.” As a specialist in patients with blistering diseases, he spent years going over the biologic causes (pathophysiology) of their disease, and with the Skindex-16, he learned that their concerns were most often about how they manage the next flare of the disease, especially if it happened on the weekends. He was able to provide more focused care and address his patients real, but often unspoken, concerns.