[Translated article] Good humanisation practices in the healthcare of patients with rare diseases in Pharmacy Services.

Objective: To analyse the presence of Good Humanisation Practices in the care of patients with rare diseases in Hospital Pharmacy Services and to identify the strengths and prevalent areas for improvement in the humanisation of healthcare.

Methods: An online questionnaire structured in 2 parts was developed using Google Form®. The first one was designed to collect identifying data and the second one included questions related to compliance with the 61 standards of the Manual of Good Humanisation Practices in the healthcare of patients with rare diseases in Hospital Pharmacy Services. Access to the questionnaire was sent by email to the Heads of the Hospital Pharmacy Service of 18 hospitals. The study period was from October 2021 to October 2022. The analysed variables were the number of criteria that were considered met, total compliance (percentage of criteria met), by strategic line and by type or level of standard, globally and grouped by regions of Spain.

Results: 18 Hospital Pharmacy Services were included. The overall mean of standards met was 31.1 (95% CI: 24.8-37.6) and mean total compliance was 52.1% (95% CI: 44.4%-59.7%). The mean compliance by strategic line was: Line 1, Humanisation culture: 46.5% (95% CI: 35.3%-57.7%), Line 2, Patient empowerment: 47.4% (95% CI: 37.1%-57.8%), Line 3, Professional care: 49.7% (95% CI: 39.8%-59.1%), Line 4, Physical spaces and comfort: 55.6% (95% CI: 46.3%-64.8%), and Line 5, Organisation of healthcare: 63.8% (95% CI: 55.8%-71.9%).

Conclusion: The average compliance with the standards is between 40% and 60%, which indicates that humanisation is present in the Hospital Pharmacy Services, but there is a wide margin for improvement. The main strength in the humanisation of Hospital Pharmacy Services is a patient-centred care organisation, and the area with the greatest room for improvement is the culture of humanisation.