Health-Related Quality of Life and Health Resource Utilization in Patients with Primary Immunodeficiency Disease Prior to and Following 12 Months of Immunoglobulin G Treatment

Abstract

PurposeHealth-related quality of life (HRQOL) has not been examined in patients with predominant antibody deficiency both pre- and post-immunoglobulin G (IgG) treatment initiation. HRQOL and health resource utilization (HRU) were assessed in newly diagnosed patients with primary immunodeficiency disease (PIDD) pre- and 12 months post-IgG treatment initiation.MethodsAdults (age ≥18 years) completed the 36-item Short Form Health Survey, version 2; pediatric patients (PP)/caregivers completed the Pediatric Quality of Life Inventory (PedsQL). Scores were compared with normative data from the US general population (GP) and patients with other chronic conditions (OCC).ResultsSeventeen adult patients (APs), 8 PPs, and 8 caregivers completed baseline assessments. APs had significantly lower baseline mean physical component summary scores versus GP (37.4 vs 50.5, p < 0.01) adults with chronic back pain (44.1, p < 0.05) or cancer (44.4, p < 0.05) and lower mental component summary scores versus GP (41.6 vs 49.2, p < 0.05). PPs had lower PedsQL total (63.1 vs 82.7), physical summary (64.5 vs 84.5), and psychosocial summary (62.5 vs 81.7) scores versus GP. Post-IgG treatment, 14 APs, 6 PPs, and 8 caregivers completed assessments. Hospital admissions (0.2 versus 1.8, p < 0.01), serious infections (3.3 versus 10.9, p < 0.01) and antibiotic prescriptions (3.0 versus 7.1; p < 0.01) decreased significantly overall. While APs reported significant improvement in role-physical (p = 0.01), general health (p < 0.01), and social functioning (p = 0.02) and caregivers in vitality (p < 0.01), PPs did not.ConclusionsPre-IgG treatment, patients with PIDD experienced diminished HRQOL versus GP and patients with OCC; post-treatment, HRU decreased and certain HRQOL aspects improved for APs and caregivers.

“Experiences of the burden of treatment”—Patient reports of facilitated subcutaneous immunoglobulin treatment in adults with immunodeficiency

“…High satisfaction and increased well-being resulting from combining treatment with daily life were shown, which were interpreted as promoting factors. Clinically relevant increases of HRQOL in physical health and in the mental health domain have been shown when patients with immunodeficiency receive replacement therapy (Routes et al, 2016). Espanol et al (2014) have found that home therapy regimens where patients self-administer their treatment may lead to improvements in HRQOL and treatment satisfaction.…”

“…Because patients with severe immunodeficiency require therapy indefinitely, the form of administration as well as setting in which the therapy takes place is an important factor that can affect patients’ health‐related quality of life (HRQOL). It has been found that patients with PID experience lower HRQOL scores, higher hospitalisation rates and increased limitations in their social activities, work and physical activity (Jiang, Torgerson, & Ayars, ; Routes et al., ). The goal of treatment was to individualise treatment regime to provide optimal medical outcomes and quality of life for all patients in need of treatment.…”

“…It has been found that patients with PID experience lower HRQOL scores, higher hospitalisation rates and increased limitations in their social activities, work and physical activity (Jiang, Torgerson, & Ayars, 2015;Routes et al, 2016). The goal of treatment was to individualise treatment regime to provide optimal medical outcomes and quality of life for all patients in need of treatment.…”

Perceived health of patients with common variable immunodeficiency – a cluster analysis

“…Common variable immunodeficiency (CVID) is the most common primary immunodeficiency disease (PID). Most CVID patients receive immunoglobulin (Ig)G substitution, which has a significant impact on health-related quality of life [8,9]. The estimated prevalence of CVID is between 1 : 100 000 and 1 : 10 000 in the adult population [7].…”

“…The estimated prevalence of CVID is between 1 : 100 000 and 1 : 10 000 in the adult population [7]. Most CVID patients receive immunoglobulin (Ig)G substitution, which has a significant impact on health-related quality of life [8,9]. Previous studies have shown that there are subgroups of patients with CVID with respect to their genotype, B cell or T cell profiles and clinical phenotypes [10][11][12][13][14][15][16].…”