Shared decision making for eczema patients and caregivers is not dependent on length of relationship with a provider or provider specialty

Abstract Shared decision making (SDM) is used in clinical settings to help patients make decisions regarding their treatment in collaboration with their healthcare provider (HCP). Shared decision making is well-suited for eczema as many treatment and management options exist, and there is significant disease, lived experience and patient preference heterogeneity. While a strong patient–provider relationship is likely important to facilitate SDM, the assumption that a long-term relationship between a patient and an eczema specialist leads to better SDM has not been evaluated. This study aims to understand the impact of the duration of the patient–provider relationship and type of provider on SDM experience, confidence to engage and trust in the HCP. The National Eczema Association conducted an online 64-question survey January 12 to March 14, 2021 of adult patients and caregivers of children with atopic dermatitis (AD). The SDM experience, assessed with the SDMQ9 instrument (score ranges transformed to 0–100), self-reported confidence to engage in SDM (categories: not confident at all/slightly confident/moderately confident vs. very confident/extremely confident) and trust in provider were compared by time with primary eczema HCP (categories: ≤12 months, 13–36 months and >36 months) and whether or not the HCP was a specialist (Dermatologist or Allergist vs. other provider types). Additionally, four groups were created for comparison of SDM experience: (i) patients who considered themselves to be well informed about the causes of eczema currently working with eczema specialists, (ii) patients not adequately informed and working with specialists and patients (iii) informed or (iv)uninformed working with nonspecialists. ANOVA was used for group comparison of continuous variables and Kruskal–Wallis tests were used for proportions. Responses from 767 adults and 177 caregivers (944 total) met inclusion criteria. Patients were primarily female (80.2%) and had a mean eczema RECAP score of 11.4. There was no difference in SDMQ9 score by time with HCP [≤12 months (62.6; n = 281), 13–36 months (66.9; n = 261) and >36 months (65.1; n = 402)], although respondents who saw their HCP longer than 12 months indicated they were more confident to engage in SDM (P < 0.001) and were more likely to ‘always’ trust their HCP (P < 0.001). There was no difference in SDMQ9 score, confidence to engage or trust in HCP for those seeing specialists (n = 734) vs. nonspecialists (n = 210). However, patients who were well informed had higher SDMQ9 scores than those who were not adequately informed, regardless of whether or not they were seeing a specialist (20.1 points higher for those who were well informed/seeing a specialist and 17.6 points higher for well informed/nonspecialist). The same was true for confidence to engage in SDM. Trust and confidence can build over time between patients with AD and providers, which may have an impact on treatment decisions and adherence. However, not all patients with AD and caregivers have access, resources or the ability to have long-term relationships with providers who are eczema specialists. This study shows that neither of those are prerequisite for patients with AD to engage in productive SDM, but that patient knowledge may be highly important. This highlights the need for comprehensive patient education across eczema care settings.