Impact of the Alfacare patient support programme on quality of life in patients with Alpha-1 Antitrypsin deficiency

<bold>Introduction:</bold> AlfaCare is a patient support programme (PSP) for Alpha-1 Antitrypsin deficiency (AATD) patients aimed at improving patients' quality of life (QoL) and enhancing disease adaptation through psychological support and training in respiratory techniques. The programme offers phone counselling, personalised physiotherapy and group educational activities. Our aim is to evaluate the impact of AlfaCare in patients’ QoL. <bold>Methods:</bold> Patients enrolled had severe AATD and received standard medical care and augmentation therapy. The COPD Assessment Test (CAT) was used to assess QoL at programme entry and annually thereafter. Bivariate analysis was used to test differences in mean CAT scores at yearly follow-ups vs. baseline. <bold>Results:</bold> 232 patients were included: 48.7% women, age 58.3, 75% GOLD Stage II or III. Assessments were performed on 115 patients (year 1), 109 (year 2), 135 (year 3) and 87 (year 4). Average CAT scores: 21.0 (baseline), 18.1 (year 1), 18.1 (year 2), 17.2 (year 3) and 16.3 (year 4). Average differences in CAT scores for each follow-up vs. baseline were -3.8 (year 1, p<0.001), -3.1 (year 2, p<0.001), -4.1 (year 3, p<0.001) and -5.6 (year 4, p<0.001). <bold>Conclusions:</bold> Patients enrolled in AlfaCare consistently showed improved QoL over follow-up. This QoL improvement resulted in a reduction in the CAT category from high to medium impact after year 1, which was sustained in subsequent years. Results suggest that AlfaCare, which involves regular visits and education by psychologists, can be effective in enhancing the QoL of patients with AATD. This PSP may also help prevent or delay the progression of respiratory symptoms and its complications.