Affiliation:
1. Department of Dermatology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands
2. Health, Medical and Neuropsychology Unit, Institute of Psychology, Leiden University, 2311 EZ Leiden, The Netherlands
Abstract
Background: Little is known about the impact of MF on quality of life (QoL) in newly diagnosed patients. Objectives: To describe the impact of the MF diagnosis on QoL, patient expectations, and treatment satisfaction over the first 6 months after diagnosis. Methods: Outcomes of this prospective cohort study of newly diagnosed MF patients conducted between 2020 and 2022 at the Leiden University Medical Center included the Skindex-29, RAND-12 Health Survey, degree of itch, pain, and fatigue (Visual Analogue Scale (VAS)), patient expectations, and Client Satisfaction Questionnaire-8 (CSQ-8), measured at baseline and after six months. Results: A total of 28 patients with MF were included. At baseline, 66% (n = 18) “strongly-totally” expected positive effects of the treatment. At the time of diagnosis, 28% of the patients (n = 8) were moderately to severely affected. There was no statistical change in the Skindex-29 score sum score (20 [10–34] vs. 20 [9–36]; p = 0.81) or in the other three subdomains, the RAND-12 scores, and the VAS itch, pain, and fatigue over time. Treatment satisfaction was high overall. Conclusion: Despite that the newly diagnosed MF patients anticipate a positive treatment effect, few improvements in QoL and symptom reduction were found. These data can be used for adequate expectation management and provide a rationale for further evaluation of treatment regimens in these patients.