Dermatology & Quality of Life
Improving Quality of Life for Dermatologic Conditions Through Assessment
Dermatologic conditions can be embarrassing and stressful for those affected. Skin diseases can affect the way people see themselves, as well as how they project themselves in society. A major goal of dermatology is to minimize this negative quality of life impact. To know how well a treatment might be working on quality of life, it would be helpful to quantify the impact.
Emory dermatologist, Suephy Chen, MD, associate professor in dermatology, has developed three instruments that measure how a patient's quality of life is affected by particular skin diseases. The three instruments, ItchyQoLTM, RosaQoLTM, and ScalpdexTM, are surveys that assess how chronic itch, rosacea, and scalp psoriasis and seborrhoeic dermatitis, respectively, impact a patient's quality of life.
Rosacea and psoriasis are both chronic skin diseases. Rosacea typically involves recurring redness on the cheeks, nose, chin, or forehead. This redness increases and persists over time, often causing blood vessels under the skin to become visible. If untreated, rosacea can cause bumps and pimples to develop. Symptoms of rosacea include dryness, skin thickening, and/or facial swelling, in addition to watery or bloodshot eyes.
Psoriasis occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells. Affecting as many as 7.5 million Americans, psoriasis typically causes raised, red patches on the skin that are covered with a silvery white buildup of dead skin cells.
While there are treatments to control and reverse symptoms for rosacea and psoriasis, there are no cures. The symptoms that accompany these ongoing conditions can impact a patient’s day-to-day activities, affecting a patient's quality of life, or QoL. Quality of life incorporates physical, emotional, and functional aspects of a patient’s well being. Chen says instruments that measure QoL are important in treating a disease.
Using patient-derived items, the ItchyQoLTM, RosaQoLTM, and ScalpdexTM evaluate patients on disease-specific issues such as embarrassment, physical pain, and social stressors. These results, in turn, are quantified into scores. These scores can be used in the research setting as well as for individual patient care. "It's one thing for somebody to sit in front of you and give you a long conversation about how this is horrible, but if you can distill it down to a number that has meaning, then that’s incredibly powerful when you want to know whether somebody’s improving or not," says Chen. "You can also see what particular aspect of the disease impact is improving or not."
Chen says the instruments have generated interest from pharmaceutical companies and academic institutions; the surveys can be used to measure the effectiveness of a particular drug, or to examine similarities and differences across populations. The instruments are also being translated into other languages to be used in global studies. RosaQoLTM and ScalpdexTM are both available in Spanish, and ItchyQoLTM is available in 15 languages.
Corporations and academic medical centers frequently use Chen's Quality of Life instruments in clinical trials and observational studies, says Raj Guddneppanavar, licensing associate in Emory's Office of Technology Transfer. "These instruments are making a positive impact in the way patients are treated and are being used to help develop new treatments and new ways of thinking about treatments for these potentially debilitating dermatological diseases," Semprevio says.
To develop these instruments, Chen and her team conducted focus groups and in-depth interviews with patients, until they began identifying patterns. Then they devised a set of questions and tested the psychometrics of the measures to ensure validity, reliability, and responsiveness. Such measures in assessing a patient's quality in life weren’t always available in dermatology. In fact, the impetus for these instruments stems from a gap that Chen found in her field. During her residency in the 90s, Chen encountered a psoriasis patient who was receiving a topical treatment that used coal tar. The messy procedure required him to be in bed for hours, sandwiched between hot towels and plastic wrap.
In an effort to reduce costs and improve efficiency under the policy of managed care, Chen says the hospital decided to deny the patient this treatment. Chen says she tried to advocate for the patient by searching for evidence of the treatment's effectiveness in scientific literature. However, she found that no such research existed in the field of dermatology. "It turned out that health services research is what would address this gap," Chen says.
Health services research investigates how patients are impacted by healthcare in the real world. After completing her residency, Chen began a health services research fellowship at Stanford University, working alongside a health services researcher in cardiology. In 2000, Chen joined the faculty at Emory and applied the methods she had learned to dermatology. "When I got into the field, there was hardly anything out there," Chen says. "I was forced to make my own tools."
Chen and her team are in the process of getting a fourth such instrument licensed, called NailQolTM, which measures how nail fungus affects quality of life. Also in the works is a pediatric version of ItchyQoLTM, which will use cartoons to illustrate the survey questions in a more age-appropriate manner. In addition to the adult and pediatric versions of ItchyQoLTM, Chen says that she has also designed a version of ItchyQoLTM for teens.
Techids: 05067, 06082, 06083
Read our technology brief for RosaQol
Read our technology brief for ItchyQol
Read our technology brief for Scalpdex