OBJECTIVES: Alpha-1 antitrypsin deficiency (AATD) is a rare genetic disorder affecting an estimated 3.4 million individuals worldwide and is characterised by a reduced serum concentration of alpha-1 antitrypsin and/or the identification of a defective genotype.

The aim of this study was to define the patient journey in the treatment of AATD in the day hospital, from the perspective of healthcare professionals and to estimate the economic burden of the process.

METHODS: Three workshops were carried out with a multidisciplinary expert panel (pneumology, 8; pharmacy, 8; nurse, 5) to develop the patient journey. Subsequently, a consensus meeting was held to validate the representative of the patient journey in Spanish clinical practice. Finally, the cost associated with the process was quantified.

RESULTS: Three phases were identified in the patient journey: 1) before treatment ; 2) during treatment; and 3) after treatment . An average time was estimated at 77 minutes/patient, 169 minutes/patient, and 28 minutes/patient for phase 1, 2 and 3, respectively. In phase 1, the estimated average cost per patient was €0.81 for administration staff, €11.09 for nursing and €5.44 for pharmacy. During the phase 2, cost per patient was estimated at €1.98, €20.56, €10.89, and €4.81 for the warden, nursing, pharmacy and pneumology, respectively. In the phase 3, an average cost per patient was estimated at €0.81 for administration staff, €1.61 for nursing, €1.36 for pharmacy, and €2.75 for pneumology.

CONCLUSIONS: Use of the patient journey can help clinicians to understand the experiences their patients go through helping them to develop patient-centered treatment. In this case, the patient journey related to the treatment of AATD is widely conditioned by the long time required to prepare and administrate the drug. Reducing this time should be a priority to clinicians to reduce the burden of care on the healthcare system.