Search

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.To understand experiences, preferences, and expectations for SDM in eczema care settings from the patient and caregiver perspective.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.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.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.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.

ImportancePatient values and preferences can inform atopic dermatitis (AD) care. Systematic summaries of evidence addressing patient values and preferences have not previously been available.ObjectiveTo inform American Academy of Allergy, Asthma & Immunology (AAAAI)/American College of Allergy, Asthma and Immunology (ACAAI) Joint Task Force on Practice Parameters AD guideline development, patient and caregiver values and preferences in the management of AD were systematically synthesized.Evidence ReviewPaired reviewers independently screened MEDLINE, Embase, PsycINFO, and CINAHL databases from inception until March 20, 2022, for studies of patients with AD or their caregivers, eliciting values and preferences about treatment, rated risk of bias, and extracted data. Thematic and inductive content analysis to qualitatively synthesize the findings was used. Patients, caregivers, and clinical experts provided triangulation. The GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation–Confidence in the Evidence from Reviews of Qualitative Research) informed rating of the quality of evidence.FindingsA total of 7780 studies were identified, of which 62 proved eligible (n = 19 442; median age across studies [range], 15 years [3-44]; 59% female participants). High certainty evidence showed that patients and caregivers preferred to start with nonmedical treatments and to step up therapy with increasing AD severity. Moderate certainty evidence showed that adverse effects from treatment were a substantial concern. Low certainty evidence showed that patients and caregivers preferred odorless treatments that are not visible and have a minimal effect on daily life. Patients valued treatments capable of relieving itching and burning skin and preferred to apply topical corticosteroids sparingly. Patients valued a strong patient-clinician relationship. Some studies presented varied perspectives and 18 were at high risk for industry sponsorship bias.Conclusions and RelevanceIn the first systematic review to address patient values and preferences in management of AD to our knowledge, 6 key themes that may inform optimal clinical care, practice guidelines, and future research have been identified.

ImportanceAtopic dermatitis (AD) is long term and burdensome. Studies investigating disease burden in adults are limited in scope with gaps in understanding of the adult patient lived experience.ObjectiveTo describe the multidimensional burden of AD among mainly US adults.Design, Setting, and ParticipantsThis survey study for an externally led patient-focused drug development meeting with the US Food and Drug Administration on adult patients with AD was conducted between August 1, 2019, and October 11, 2019. Data were analyzed betwean March 26, 2021, and June 29, 2021.Main Outcomes and MeasuresWe used multivariable ordinal regression to assess associations between demographic and clinical variables and patient-reported overall AD impact scores (ordinal scale from 1 [no impact] to 5 [significant impact]).ResultsAmong 1065 survey respondents, 114 (11%) were aged 18 to 24 years, 235 (22%) were 25 to 34 years, 242 (23%) were 35 to 50 years, 288 (27%) were 51 to 64 years, and 186 (17%) were aged 65 years or older; 881 (83%) were women. Four hundred eighty-nine (46%) participants reported low-moderate AD impact scores (2-3), 544 (51%) reported high-significant impact scores (4-5), whereas 32 (3%) reported no association of AD with disease burden (impact score, 1). Variables strongly associated with overall impact scores were current AD severity (moderate: OR, 4.13; 95% CI, 2.94-5.79; severe: OR, 13.63; 95% CI, 8.65-21.50 vs mild), and time spent managing AD (11-20 hours: OR, 2.67; 95% CI, 1.77-4.03, ≥21 hours: OR, 5.34; 95% CI, 3.22-8.85, vs Conclusions and RelevanceIn this survey study, AD severity and time spent managing symptoms showed the strongest associations with disease burden. This analysis highlights the multidimensional burden of AD in adults and emphasizes the need for more effective treatment strategies that reduce the time patients spend managing their AD.