Abstract

BackgroundEczema can be difficult to treat due to its chronic, heterogeneous nature. Effective long-term treatments for adults and children are needed. Little is known about what considerations influence eczema patient and caregiver decision-making regarding clinical trial participation (CTP). This study identifies factors that adult patients and caregivers consider important for CTP and determines if differences exist between these groups. MethodsA 46-question survey was administered May 1-June 6, 2020, to adults and caregivers of children with eczema. Respondents were asked to rate the importance of a series of factors when considering CTP; adults and caregivers were compared. ResultsOut of 31 total factors queried, eleven factors differed significantly in importance ratings between adults (n = 470) and caregivers (n = 134). The route of therapy (p = 0.030), side effects (p = 0.014), washout period (p = 0.028), receiving a placebo (p = 0.027), rescue therapy option (p = 0.033), access to test drug after trial (p = 0.027), sticking with the clinical trial regimen (p = 0.025), fit with work/school (p = 0.005), impact on overall health (p = 0.008), and satisfaction with current treatment (p = 0.033) were all more likely to be rated as important by caregivers than by adult patients. Only altruism was rated more highly by adult patients than caregivers (p = 0.027). ConclusionsCaregivers are more likely than adults to attribute high importance to factors that may affect their child's eczema or well-being when considering CTP. Patient-centered CTP education materials and decision aids may support patients and caregivers in CTP decision-making.

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