Dermatology & Quality of Life
Improving Quality of Life for Dermatologic Conditions Through Assessment
Every day, 84.5 million Americans experience the physical and emotional impacts of skin disease, often facing crippling feelings of embarrassment and shame. Yet these highly personal consequences are notoriously difficult to capture and describe, and even harder to quantify. Without a reliable way to compare a person’s quality of life before and after treatment for a skin condition, it can be challenging to determine if the treatment is making a tangible impact on a patient. In the best cases, a researcher in a clinical trial might administer a broad assessment that crudely calculates a patient’s overall quality of life, a measure that is often not specific enough to be of help during treatment.
Suephy Chen, MD, Professor and Vice Chair of Dermatology at Emory University, wants to change that. “[Current assessments] are not very sensitive measures, so they may not pick up on improvements in a specific dermatologic disease,” explains Chen.
Chen developed ItchyQoL™, RosaQoL™, and Scalpdex™, which are disease-specific quality of life measures for psoriasis, rosacea, and seborrhoeic dermatitis, respectively. For instance, ItchyQoL™ tracks improvement in a painful chronic disease called psoriasis, which is characterized by red, scaly patches of skin covered by a layer of dead skin cells. The assessment measures the impact of these itchy patches through multiple lenses, such as physical, emotional, and functional effects.
ItchyQoL™ has met with resounding success, and has already been adapted as the official itch quality of life instrument in Europe. To this date, the tool has been translated into over 14 different languages.
Overall, these instruments provide a more sensitive measure of how effectively dermatological treatments impact patients’ quality of life. They have attracted the interest of pharmaceutical companies, which use it as an outcome measure for drug trials. Drug trials require highly specific, quantifiable results to prove a treatment’s efficacy. Without convincing data, promising drugs might not make it to market.
But Chen is not ready to call it quits. In addition to the assessments she has already pioneered, she is developing other editions of the tool. For example, the original assessments were developed for adults, and thus, Chen is currently working on extending the use of such assessments to other populations. With support from a grant from the National Institutes of Health, Chen has been working with Jim Roberts, PhD, Associate Professor of Psychology from Georgia Tech, to develop pediatric versions of ItchyQoL™, as well as ItchyQuant™, an illustrated self-report scale for itch severity. Chen explains, “Children have very different perceptions of how itch affects them. We developed the ItchyQuant™ for kids who have a hard time understanding sophisticated instructions.”
Both the pediatric ItchyQo™L tools and the ItchyQuant™ are currently going through the validation process, which evaluates the reliability of the assessments. This requires delivering the assessment repeatedly to a test group over time. “We administer the questionnaire at baseline, a week later, and a few months later,” Chen says, “Between the first two timepoints, the itch shouldn’t have changed a lot, so if they answer the same way, we know it’s reliable.” The comparison of the first and third time points test the patients’ responsiveness to the instrument.
So far, ItchyQuant™ has been validated in adults with psoriasis. The results, published in the Journal of Investigative Dermatology in January 2017, indicated that patients also preferred ItchyQuantTM over traditional self-report numeric rating scales on the basis that it was easier to use (Haydek et al., 2017).
Chen has also been working on NailQol™, which measures how nail fungus affects quality of life, and developing alternate versions of the SkinDex, a 15-30 question instrument which objectively assesses the overall impact of dermatologic healthcare on patients.
“That’s a lot of questions for patients to answer when you only have a 15 minute appointment with your dermatologist”, Chen says, as she explains her incentive for the project. SkinDexMini™ further improves efficiency and the ability to deploy the QOL instrument in busy clinical environments where it may be used without disruption of workflows. The questions in this QOL instrument focus on capturing data in three domains affecting patients who have skin disease: symptoms, emotions, and function.
In collaboration with Chren, the original developer of Skindex, and Robert A. Swerlick, MD, Head of Dermatology at the Emory Clinic, Chen developed the Standard Dermatology Outcome Measures ("SDOM"). SDOM enhances the SkinDexMin™i by allowing the capture of an itch score using a visual analog scale, a patient global assessment of skin disease treatment response, an assessment of skin disease treatment adequacy, and a screen for possible iatrogenic injury from treatment.
As these quality of life instruments continue through the validation process, Chen has high hopes that in the future these tools, originally developed for research purposes, can also be incorporated into clinical care. “It’s exciting because, if these tools get used in clinical care,” Chen excitedly says, “that would be a really nice opportunity to see whether or not we’ve made a big difference.”
Techids: 05067, 06082, 06083, 17192
Read our technology brief for RosaQol
Read our technology brief for ItchyQol
Read our technology brief for Scalpdex