In 2019, five patients advocate organizations collaborated with the FDA to conduct an external, patient-focused drug development meeting on atopic dermatitis (AD) called More Than Skin Deep, according to Wendy Smith Begolka, MBS. “The meeting provided critical awareness and a deeper understanding of the overall patient experience and the significant burden of AD for patients and their families,” she says, “in addition to identifying unmet therapeutic and care needs. While there is growing awareness of the seriousness of AD and the unmet needs of affected individuals,
there is limited published information regarding the lived experience of the disease as reported by patients.”
For a study published in JAMA Dermatology, Smith Begolka and colleagues aimed to describe the multidimensional burden of AD among adults living in the United States. “Our study is the continuation of collaborative work by the patient advocate organizations that convened the meeting and further analyzes survey data collected from meeting participants to investigate the contribution of different dimensions of the disease and the impact on QOL,” Smith Begolka says. “We hypothesized that some elements of disease burden would correlate more strongly with overall disease impact scores.”
To examine their hypothesis, the study team analyzed data from 1,065 survey respondents, all of whom were adults living with AD. They used univariable and multivariable ordinal regression to examine links between clinical and
demographic characteristics with each level of overall reported AD impact scores (1-5 scale, with 1 being no impact and 5 being significant impact).
Majority of Patients With AD Report a Significant Impact on Their Lives
Smith Begolka and colleagues identified three key findings:
1l There is a considerable negative effect of AD on the lives of adult patients.
› The majority (51%) of patients with moderate-to-severe AD report a high/ significant impact on their lives due to
overall burden from AD symptoms.
› Another 28% of patients reported a moderate impact.
2l As AD disease severity and time spent managing AD symptoms increases, so too does patient-reported overall burden of disease.
› Higher patient-reported disease burden is linked with spending 11 or more hours per week on disease management.
3l Overall AD disease burden is not driven by any single disease or QOL impact, underscoring its complex heterogeneity.
› The burden of AD is multidimensional and can be uniquely experienced by affected individuals (Figure).
Study Adds an Important Dimension of Patients’ Lived Experiences
“Our work complements previous published research that acknowledges the clinical heterogeneity of AD but adds an important dimension regarding the heterogeneity of patients’ lived experiences,” Smith Begolka says. “This indicates that both aspects are important as dermatologists and patients work together to acknowledge the unique disease burden each patient faces and design treatment approaches that strive to alleviate clinical and QOL impacts. Furthermore, given that time spent managing AD was found to be an additional source of burden for patients with AD, as treatment plans are being designed, dermatologists should consider the efforts needed for patients to appropriately use recommended options to avoid additional, unintended iatrogenic burden.
Smith Begolka and colleagues concur that further research is needed in this area. “While we did not find a single aspect of patients’ experiences that correlates strongly with a large group of affected individuals, further investigation may elucidate how individual patients weigh these factors at a single point in time and at different times of their lives,” Smith Begolka says. “Further exploration and understanding this lived experience heterogeneity
will be important for care decision making, as well as maximizing desired treatment outcomes. In addition, further work is needed to identify strategies and therapies that reduce time spent managing AD.”
