Past, Present and Future Shared Decision Making Behavior Among Patients With Eczema and Caregivers


By National Eczema Association

Published On: Jul 6, 2022

Last Updated On: Jul 6, 2022

Findings Highlight Importance of Shared Decision Making between Patients and Healthcare Providers

To what extent do patients with eczema provide input into their own treatment and what factors contribute to positive care conversations? 

The National Eczema Association (NEA) research team sought to answer these questions in their latest publication based on survey findings from eczema patients and caregivers. Published July 6, 2022 in JAMA Dermatology, this paper discussed the eczema community’s experiences with shared decision making, a practice that can contribute to desired care outcomes.

Findings of the NEA-led study were analyzed in collaboration with principal investigators Isabelle J. Thibau, MPH (NEA), Allison R. Loiselle, PhD (NEA), Emile Latour, MS (Biostatistics Shared Resource, Knight Cancer Institute, Oregon Health & Science University), Erin Foster, MD, PhD (Center for Health & Healing, Oregon Health & Science University) and Wendy Smith Begolka, MBS (NEA). 

Choosing a treatment for eczema can be challenging – for both patients and providers – due to the highly variable nature of the disease. There are also many new treatments for eczema, with more in development, highlighting the need for increased collaboration between healthcare providers and patients when discussing and deciding on treatment options.

Shared decision making is the process of a healthcare provider (HCP) working with a patient or caregiver to factor the patient’s unique preferences and values into making decisions about medically appropriate treatment options.”

The process of shared decision making can help patients understand and choose treatments that align with their personal needs. Prior research about shared decision making for other chronic diseases found it to be a valuable approach to increase patient satisfaction during consultations and adherence to treatment regimens.1 Another study in the U.S. also found a correlation between poor shared decision making and poor patient-reported outcomes.2 These findings, along with other dermatologic and non-dermatologic studies, exposed a gap in understanding the experience and potential value of shared decision making for eczema patients.

The research team surmised that shared decision making would be beneficial for a condition such as eczema that fluctuates in severity and varies in treatment per patient. Before exploring opportunities to enhance shared decision making in eczema care, however, the team first had to identify community experiences and preferences for shared decision making, as this had not been previously assessed.

Shared decision making correlates to higher patient care satisfaction

From the survey results of 1,313 patients and caregivers, investigators found that a “higher degree of involvement in shared decision making was significantly associated with higher consultation satisfaction.”4 Upon further analysis, they also determined that “self-reported knowledge about the causes of eczema was associated with past and future shared decision making” and that disease control was inversely associated with past shared decision making behavior.4

Motivating factors in shared decision making

Shared decision making can originate from the patient’s own initiative; however, NEA’s investigators noted key motivators that are directly related to higher levels of shared decision making between healthcare professionals and patients. Motivating factors found to increase participation in shared decision making include:

  • the clinician welcomes the patient’s input or initiates an opportunity for shared decision making;
  • acknowledges the patient is the expert on their body;
  • provides multiple recommendations for treatment and helps guide the patient toward a decision;
  • or if treatment is or is not working.4

Analyzing high levels of patient and caregiver involvement in shared decision making for eczema treatment

Healthcare providers have a unique opportunity to facilitate shared decision making in care settings by empowering patients and caregivers to make decisions and incorporating education about eczema and its causes into patient interactions. These new survey results demonstrated that a higher degree of patient involvement in eczema shared decision making was associated with higher levels of consultation satisfaction and provide a strong foundation for engagement in shared decision making to additionally foster adherence to treatment plans and control of the condition itself.

To validate respondents’ answers, investigators utilized three tools as part of the 64-question survey. RECAP refers to a questionnaire about eczema control over the course of a week; SDMQ9 refers to a questionnaire about how much patients or caregivers have been involved in the shared decision making process; and CPS refers to a scale that asks how much control a patient or caregiver wants in their own treatment.4 

Survey analysis showed respondents were mostly female adult patients with a mean patient RECAP score of 11.7 and a mean SDMQ9 of 65.1.4 

In regard to current shared decision making processes, 49.6% of respondents state they prefer to make their own decision after considering the doctor’s opinion and 69.4% report being very/extremely confident to engage in shared decision making in the future.4 These findings confirm an important role for shared decision making for improving patient satisfaction with their care.

Furthermore, those who reported feeling “very well informed” about eczema causes had a 14.7-point higher SDMQ9 score and were 3.4 times more likely to be confident to engage in future shared decision making.4 The SDMQ9 score was 10.9 points higher (95% CI, 3.1-18.8; P=.006) for those who felt their opinions were valued compared with those who did not.

Opportunities for incorporating shared decision making into clinical practice

One notable gap identified in the study, however, is between patient and healthcare provider perception of how much shared decision making occurred as previous, non-eczema-related studies report disparate results between the two groups.5 Future studies are underway and will explore aspects of the patient-provider relationship.

Overall, the study exemplifies that shared decision making is a vital aspect of care conversations for eczema patients and should become more utilized in normal clinical practice to improve patient satisfaction and ideally care outcomes.

Additional findings and insights from this study are expected to be published soon. For more information about this study and other research conducted by NEA, visit:

Visit the JAMA site to view the full article here.


1. Van der Kraaij GE, Vermeulen FM, Smeets PMG, Smets EMA, Spuls PI. The current extent of and need for shared decision making in atopic dermatitis and psoriasis in the Netherlands: an online survey study amongst patients and physicians. J Eur Acad Dermatol Venereol. 2020.

2. Hughes TM, Meerut K, Chen Q, et al. Association of shared decision-making on patient-reported health outcomes and healthcare utilization. Am Surg. 2018.

3. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies Press (US); 2014.

4. Thibau, I.J., Loiselle, A., Begolka, W.S. et al. Past, present, and future shared decision making behavior among eczema patients and caregivers. JAMA Dermatol (2022).

5. Wei W, Anderson P, Gadkari A, et al. Discordance Between Physician-and-Patient-Reported Disease Severity in Adults with Atopic Dermatitis: A US Cross-Sectional Survey. Am J Clin Dermatol. 2017.

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