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

IMPORTANCE: Engaging in shared decision-making (SDM) can help patients understand and choose treatments according to their values and has been shown to improve patient satisfaction and adherence with treatment. It is well suited for conditions like eczema for which several medically appropriate treatment options exist. However, little is known about the use and experience of SDM in eczema. OBJECTIVE: To understand experiences, preferences, and expectations for SDM in eczema care settings from the patient and caregiver perspective. DESIGN, SETTING, AND PARTICIPANTS: The National Eczema Association conducted an online survey in January 2021 among self-selected patients and caregivers. Inclusion criteria (US resident, patient with eczema or caregiver of a patient with eczema aged ≤17 years, respondent age ≥18 years) were met by 1313 of 1387 respondents (94.7%). Data analysis was performed from May 2021 to November 2021. MAIN OUTCOMES AND MEASURES: Outcomes were past SDM (using a 9-item SDM questionnaire [SDMQ9]; score ranges transformed to 0-100), present SDM (Control Preferences Scale), and future SDM (self-reported confidence and motivation to engage in SDM) behavior. RESULTS: Among the 1313 respondents included in the study, most were female (1046 of 1313 [79.7%]) adult (1086 of 1313 [82.7%]) patients with a mean (SD) patient Recap of Atopic Eczema score of 11.7 (7.2), mean (SD) patient age of 39.5 (22.2) years, and mean (SD) SDMQ9 score of 65.1 (27.4). For present SDM, 479 of 966 (49.6%) reported “I prefer to make the final decision after seriously considering my doctor’s opinion,” and 655 of 955 (69.4%) reported being very or extremely confident to engage in SDM in the future. Those who reported feeling “very well informed” about the causes of eczema had a 14.7-point higher (95% CI, 9.2-20.2; P < .001, multiple linear regression) SDMQ9 score than those “not adequately informed” and were 3.4 times more likely (95% CI, 2.1-5.7; P < .001, multiple logistic regression) to be confident to engage in future SDM. Respondents reported that they would be motivated to engage in SDM if the clinician initiated SDM, valued input from the patient, and acknowledged that patients are experts on their own bodies or if a treatment is no longer working. CONCLUSIONS AND RELEVANCE: Results of this survey study suggest that a majority of patients with eczema and caregivers prefer a large role in decision-making for their care and that clinicians can initiate and facilitate SDM to improve patient satisfaction with care.