gms | German Medical Science

Background: The people-centred model of care for psoriasis prioritizes patients’ needs and preferences in clinical decisions, along with clinical evidence and expertise. Health literacy (HL), i.e. the individual’s capacity to seek, understand and utilize health information, is a prerequisite to make informed decisions.

Objective: To examine the associations between sources of information regarding psoriasis and its treatments, HL and shared decision making, from the patients’ and the physicians’ perspectives.

Method: Preliminary baseline data from the longitudinal observational PsoValue study included German patients aged ≥18 years with plaque-type psoriasis, who were initiating a new systemic treatment. The main outcome was shared decisions for the new treatment, from both the patients’ and the physicians’ perspectives. Patients also completed the Health Literacy Questionnaire (subscales Healthcare provider support [HPS], Having sufficient information [HSI], Critical appraisal [CA], Ability to find good health information [FHI] and Reading and understanding health information [UHI]) and reported on their sources of information about the disease/ treatments.

Results: Participants were 54 patients (44.9±14.7 years, 48.1% male). Mean Psoriasis Area and Severity Index (PASI) was 8.4±9.0 and 92.6% of patients were initiating therapy with biologics. From the physicians’ perspective, the new treatment was mainly decided by themselves in 24.1% of cases and a shared decision in 75.9% of cases. Patients reported 57.4% of shared decisions, 27.8% of decisions mainly driven by physicians and 11.1% of decisions mainly driven by themselves. The rate of agreement between the physicians’ and the patients’ perspectives was poor (Cohen’s K = 0.05). Information regarding psoriasis/ treatments were mainly conveyed by the physicians (90.7%/ 87.0%), retrieved from the internet (48.1%/ 29.6%) and from brochures (25.9%/ 24.1%). Higher levels of HL were significantly associated with receiving information from brochures and from physicians, but not from the internet. No significant correlations were found between the patients’ perspective of shared decisions and HL, but the physicians’ report of shared decisions was significantly correlated with higher levels of patients’ HL (r between 0.31 and 0.47).

Discussion: The extremely poor agreement between patients’ and physicians’ perspectives of shared decisions denotes a lack of clear communication in the clinical setting. Even in cases of shared decisions, if the patient does not acknowledge his/her participation, the disease self-management/ treatment compliance may be compromised. Because patients with higher levels of HL are more likely to be involved in clinical decisions, it is crucial to provide them with the information and support they need to advocate for their needs, preferences and treatment goals.

Practical implications: Along with the information provided by the physicians, brochures with information that is easy to understand might contribute to improve patients’ HL. Internet sources must be used with caution.

Appeal for practice in one sentence: Patient education and participation in clinical decisions should be boosted, particularly for those with low levels of HL.

Funding: This study was part of the project “Understanding patient choices in value-based psoriasis care: Identification of patient motives for using Apremilast” (PsoValue), which was supported by Amgen.