Patients with Psoriasis Prefer "Large Role" in Decision Making Process

Isabelle J. Thibau, MPH

New data from the National Eczema Association suggested that a majority of patients with eczema and caregivers of children with eczema preferred to play a large role in decision-making regarding care.

An investigative team led by Isabelle J. Thibau, MPH, of the National Eczema Association, deemed eczema to be “particularly well suited” for the practice of shared decision-making (SDM) among patients and clinicians, especially given the myriad of treatment approaches available.

Despite this, the team noted the lack of data regarding the experiences with SDM among patients with eczema and caregivers in clinical settings across the United States, which prompted the current investigation.

Assessing SDM Familiarity

To address this issue, Thibau and colleagues enrolled adults US patients with a self-reported diagnosis of eczema or primary caregivers of pediatric patients with eczema, and invited them to complete a 64-question online survey regarding the burdens of the skin condition.

Following completion of the survey, patients were tasked with completing a 9-item SDM questionnaire (SDMQ9), which rated the extent of patient involvement in the care process, and responding to the Control Preferences Scale (CPS), which questioned how much control a patient or caregiver wanted regarding decisions made about their treatment.

The question, “How confident do you feel about engaging in shared decision-making with your primary eczema healthcare provider?” were answered with 1 of 5 available responses: extremely confident, very confident, moderately confident, slightly confident, and not confident at all.

Meanwhile, eczema control was measured via the Recap of Atopic Eczema (RECAP) 7-item questionnaire, and familiarity with SDM was assessed when patients were tasked with responding to the statement “I feel that I have ‘something to add’ to a discussion with a healthcare provider about my/my child’s condition” through a 5-point Likert scale.

The Findings

A total of 1313 respondents were featured in the study, a majority of whom were females (79.7%) and adults (82.7%) with a mean RECAP score of 11.7. The mean patient age was 39.5 years, and the mean SDMQ9 score was 65.1.

Regarding SDM, nearly half (49.6%) of all patients currently involved in the practice reported that they preferred “to make the final decision after seriously considering my doctor’s opinion”, while 655 of 955 (69.4%) patients reported being “very or extremely confident” engaging in SDM in the future.

Notably, patients who considered themselves “very well informed” about the causes of eczema had a 14.7-point higher (95%CI, 9.2-20.2) (P < .001) SDMQ9 score than those “not adequately informed”, with the former being 3.4 times more likely to be confident about future SDM practices.

Broadly speaking, patients reported that they would be more willing to engage in SDM if clinicians initiated it and valued the perspectives their patients had on their own bodies or if a treatment was no longer working.

With these findings, investigators suggested that health care providers had a “unique opportunity” to facilitate SDM and empower patients and caregivers by involving them in the process of eczema care.

“Acknowledgement from the clinician that the patient and caregiver perspective is valuable may also potentially increase SDM, which can increase satisfaction with the visit, ultimately leading to increased adherence and better disease control,” the team wrote.

The study, "Past, Present, and Future Shared Decision-making Behavior Among Patients With Eczema and Caregivers," was published online in JAMA Dermatology.