OBJECTIVES: This study aimed to characterize patients’ journey with Psoriatic Disease (PsD) in Portugal, through patient-reported expectations and unmet needs, from symptom onset to diagnosis, treatment, and follow-up. PsD is a chronic condition that includes Psoriasis (PsO) and Psoriatic Arthritis (PsA), affecting the skin, the joints, or both.

METHODS: An exploratory sequential mixed-methods design was implemented to collect information about PsD patient journey. The initial phase consisted of data collection through a focus group and exploratory interviews with PsD patients (n=10), followed by an online anonymous quantitative survey, shared with members of two patient associations. Descriptive data analysis was complemented with qualitative insights.

RESULTS: From March to April 2022, 161 PsD patients (95 PsO; 9 PsA; 57 both conditions) responded the survey. 61% female, and mean disease duration of 21 years. Onset of symptoms had a significant impact on these patients, particularly due to social stigma (75%). 23% of patients reported more than 1 year to achieve a definitive diagnosis, mainly due to lengthy waiting lists for a specialist appointment. At the time of diagnosis, 42% reported not receiving all necessary information about disease management. Regarding treatment, 16% of patients weren’t involved in any decision-making. 40% of patients were on biological therapy, but most of them only initiated biologics after trying several conventional therapies. Furthermore, 71% stated that biological therapy improved their quality of life, while conventional therapies had low or no impact in improving quality of life (44%). Patients highlighted a significant economic burden from having to seek multidisciplinary follow-up care in the private sector (48%), as well as the need to purchase additional products (80%).

CONCLUSIONS: This patient-reported experience study characterized PsD patients’ expectations, hurdles and unmet needs in Portugal, highlighting barriers faced throughout the course of their journey. By characterizing the PsD patients’ journey these results can support future patient-centered initiatives.