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Alpha 1 Antitrypsin Therapy: A Satisfaction Survey of Individuals Self-Administering
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A1758 - Alpha 1 Antitrypsin Therapy: A Satisfaction Survey of Individuals Self-Administering
Author Block: R. A. Sandhaus1, B. S. Boyd2; 1Division of Pulmonary, Critical Care and Sleep Medicine, National Jewish Health, Littleton, CO, United States, 2Disease Management and Clinical Research, AlphaNet Inc., Coral Gables, FL, United States.
RATIONALE
Treatment of Alpha 1 Antitrypsin Deficiency (AATD) with intravenous (IV) Alpha 1 Antitrypsin (AAT) therapy relies heavily on healthcare professionals and can be inconvenient for patients. Self-administration has been shown to be safe and effective in other therapy areas; however, there are limited data and no recommendations for its use in AATD. This survey investigated the occurrence, practicalities, satisfaction and challenges of AAT
self-administration in AATD patients.
METHODS
This study was a cross-sectional, observational, telephone survey of patients included in the AlphaNet Disease Management and Prevention Program. Included patients were aged ≥18 years, diagnosed with AATD, and receiving Zemaira® (CSL Behring, PA) AAT therapy. Descriptive analyses were performed for the total patient population and for three demographic subgroups: age, gender and occupation.
RESULTS
Of 640 individuals contacted, 555 (86.7%) responded: mean (SD) age was 59.9 (±10.5 years); 55.9% were female. The majority of responders (90.8%) had never self-administered and most were not considering starting, due to satisfaction with their current regimen (79.7%) or a lack of confidence (26.2%). A total of 1.8% of responders had previously self-administered AAT treatment; the most frequently cited reason for stopping was the inability to self-administer independently (30.0%). Of patients not self-administering, 2.3% received treatment at home, for the majority of patients this was administered by their spouse. Overall, 44 responders self-administered their infusions (7.9%) and all patients were ‘very satisfied’ (95.4%) or ‘satisfied’ (4.6%) with their treatment. Patients more commonly heard about self-administration from other patients (39.5%) than from clinicians (25.9%). Greater independence was cited by the majority of patients (93.0%) as the greatest benefit of self-administration. The majority of patients (83.7%) reported no difficulties; challenges reported by five responders included the choice of injection site, problems finding a vein, port blockage and IV stick injuries. All self-administering patients were offered training; most received on average 2-3 training sessions (56.4%). Training was most commonly provided by home nursing agencies (72.1%).
CONCLUSION
Self-administration of AAT therapy has the potential to improve convenience and may benefit a subset of AATD patients. Results of this survey demonstrate that patients
self-administering are ‘very satisfied’, have improved independence and require limited training to self-administer independently. Educational programs are needed to raise awareness of self-administration, particularly among clinicians. Additionally, improved resources to support patients may be beneficial, in particular where patients lack confidence to initiate self-administration, or find it difficult to continue self-administering independently with worsening symptoms.
Author Block: R. A. Sandhaus1, B. S. Boyd2; 1Division of Pulmonary, Critical Care and Sleep Medicine, National Jewish Health, Littleton, CO, United States, 2Disease Management and Clinical Research, AlphaNet Inc., Coral Gables, FL, United States.
RATIONALE
Treatment of Alpha 1 Antitrypsin Deficiency (AATD) with intravenous (IV) Alpha 1 Antitrypsin (AAT) therapy relies heavily on healthcare professionals and can be inconvenient for patients. Self-administration has been shown to be safe and effective in other therapy areas; however, there are limited data and no recommendations for its use in AATD. This survey investigated the occurrence, practicalities, satisfaction and challenges of AAT
self-administration in AATD patients.
METHODS
This study was a cross-sectional, observational, telephone survey of patients included in the AlphaNet Disease Management and Prevention Program. Included patients were aged ≥18 years, diagnosed with AATD, and receiving Zemaira® (CSL Behring, PA) AAT therapy. Descriptive analyses were performed for the total patient population and for three demographic subgroups: age, gender and occupation.
RESULTS
Of 640 individuals contacted, 555 (86.7%) responded: mean (SD) age was 59.9 (±10.5 years); 55.9% were female. The majority of responders (90.8%) had never self-administered and most were not considering starting, due to satisfaction with their current regimen (79.7%) or a lack of confidence (26.2%). A total of 1.8% of responders had previously self-administered AAT treatment; the most frequently cited reason for stopping was the inability to self-administer independently (30.0%). Of patients not self-administering, 2.3% received treatment at home, for the majority of patients this was administered by their spouse. Overall, 44 responders self-administered their infusions (7.9%) and all patients were ‘very satisfied’ (95.4%) or ‘satisfied’ (4.6%) with their treatment. Patients more commonly heard about self-administration from other patients (39.5%) than from clinicians (25.9%). Greater independence was cited by the majority of patients (93.0%) as the greatest benefit of self-administration. The majority of patients (83.7%) reported no difficulties; challenges reported by five responders included the choice of injection site, problems finding a vein, port blockage and IV stick injuries. All self-administering patients were offered training; most received on average 2-3 training sessions (56.4%). Training was most commonly provided by home nursing agencies (72.1%).
CONCLUSION
Self-administration of AAT therapy has the potential to improve convenience and may benefit a subset of AATD patients. Results of this survey demonstrate that patients
self-administering are ‘very satisfied’, have improved independence and require limited training to self-administer independently. Educational programs are needed to raise awareness of self-administration, particularly among clinicians. Additionally, improved resources to support patients may be beneficial, in particular where patients lack confidence to initiate self-administration, or find it difficult to continue self-administering independently with worsening symptoms.
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