Measuring treatment satisfaction in patients with primary immunodeficiency diseases receiving lifelong immunoglobulin replacement therapy

Nicolay, Uwe; Haag, Stefan; Eichmann, F.; Herget, Sabine; Spruck, D.; Gardulf, Ann

doi:10.1007/s11136-005-1746-x

Cited by 53 publications

(47 citation statements)

References 33 publications

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“…Treatment burden related to Ig therapy was evaluated with the Life Quality Index questionnaire (LQI) for the age group 2 to 12 years (observer: parent) and the age group 13 years and older (observer: patient) [20, 21]. The LQI covers four domains: treatment interference, therapy-related problems, therapy settings, and treatment costs.…”

Section: Methodsmentioning

confidence: 99%

Efficacy, Safety, and Pharmacokinetics of a Novel Human Immune Globulin Subcutaneous, 20 % in Patients with Primary Immunodeficiency Diseases in North America

et al. 2016

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Patients with primary immunodeficiency disease (PIDD) typically require life-long intravenous (IV) or subcutaneous (SC) immunoglobulin (Ig) replacement therapy to prevent recurrent infections. The efficacy, safety, and pharmacokinetics of a highly concentrated (20 %) Ig preparation for SC administration (IGSC 20 %) were evaluated in a prospective trial in patients with PIDD. A total of 74 patients (aged 3–83 years) received 4327 IGSC 20 % infusions over a median of 380.5 days. The rate of validated serious bacterial infections was 0.012 event/patient-year (p < 0.0001 compared with the historical control), and the annualized rate of infection was 2.41 events/patient. Median IgG trough levels were >14.5 g/l. The median maximum infusion rate was 60 ml/h/site (range 4.4–180), resulting in a median infusion duration of 0.95 h. A volume ≥30 ml was infused per site in 74.8 % of IGSC 20 % infusions. Most (84.9 %) infusions were administered using ≤2 infusion sites; for 99.8 % of infusions, there was no need to interrupt/stop administration or reduce the infusion rate. No related serious adverse event (AE) occurred during IGSC 20 % treatment; related non-serious AEs occurred at a rate of 0.036 event/infusion. The incidence of related local AEs was 0.015 event/infusion and of related systemic AEs was 0.021 event/infusion; most were mild in severity, none severe. Increased infusion rates or volumes were not associated with higher AE rates. The investigated IGSC 20 % treatment was shown to be effective and safe, enabling higher infusion rates and volumes per site compared to conventional SC treatments, resulting in fewer infusion sites and shorter infusion durations.Electronic supplementary materialThe online version of this article (doi:10.1007/s10875-016-0327-9) contains supplementary material, which is available to authorized users.

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Section: Methodsmentioning

confidence: 99%

Efficacy, Safety, and Pharmacokinetics of a Novel Human Immune Globulin Subcutaneous, 20 % in Patients with Primary Immunodeficiency Diseases in North America

et al. 2016

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“…Information about treatment cost was collected as part of the Life Quality Index (LQI) questionnaire, domain Costs. 18 The LQI included 15 questions addressing the following domains: Treatment Interference (interference of IgG therapy with work, school, family, and social life), Therapy-Related Problems (convenience of infusions, their painfulness, their impact on health improvement), Therapy Setting (how pleasant and convenient the environment was in which treatment was conducted), and Costs (cost of therapy and transportation to and from the location of therapy), as well as Total Score describing healthrelated quality of life overall.…”

Section: Pharmacoeconomic Assessmentsmentioning

confidence: 99%

Cost-minimization Analysis of IgPro20, a Subcutaneous Immunoglobulin, in Japanese Patients With Primary Immunodeficiency

Igarashi

Kanegane

Kobayashi

et al. 2014

Clinical Therapeutics

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“…El PedsQL es el cuestionario que ha sido más utilizado en niños con diagnóstico de inmunodeficiencias primarias. [20][21][22][23][24][25][26][27][28] Existen algunos reportes, la gran mayoría de ellos en ensayos clínicos, en los que se ha utilizado para comparar dos o más tratamientos, pero hay muy poca información a escala mundial de la calidad de vida en las inmunodeficiencias primarias y es nula en el caso de nuestro país.…”

Section: Discussionunclassified

Calidad de vida de los pacientes con inmunodeficiencias primarias de anticuerpos

et al. 2016

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INTRODUCCIÓNLas inmunodeficiencias primarias son enfermedades hereditarias generalmente causadas por alteraciones monogénicas. Pueden afectar el sistema inmunitario en su desarrollo, su función, o en ambos.1 Se clasifican de acuerdo con la afección particular del sistema inmuno- ABSTRACTPrimary immunodeficiencies (PID) are genetic diseases affecting immunological normal response. In the great majority of cases affected individual sare predisposed to recurrent and / or severe infections with impaired quality of life (QoL). The most frequent PID are defects in the production of antibodies. When diagnosis and treatment are not done properly, permanent damage may occur in affected organs and further affecting QoL.Objective: To evaluate QoL in patients with antibody PID compared with QoL of healthy controls. Methods:Cross-sectional study with the application of the instrument "Pediatric Quality of Life Inventory" (PedsQL) in its Mexican Spanish validated version. The PedsQL score difference between children with PID and healthy children was determined by the Student t test. The effect of a delayed in diagnosis was evaluated by analysis in a covariance model. 28 patients were included. The median age was 5 years and 5 months.

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Measuring treatment satisfaction in patients with primary immunodeficiency diseases receiving lifelong immunoglobulin replacement therapy

Abstract: Three valid LQI scales were determined. Cost-related questions should be removed due to low reliability. Patients-perceived therapy effectiveness and patient-physician/nurse interaction should be included in the instrument.

Cited by 53 publications

References 33 publications

Efficacy, Safety, and Pharmacokinetics of a Novel Human Immune Globulin Subcutaneous, 20 % in Patients with Primary Immunodeficiency Diseases in North America

Efficacy, Safety, and Pharmacokinetics of a Novel Human Immune Globulin Subcutaneous, 20 % in Patients with Primary Immunodeficiency Diseases in North America

Cost-minimization Analysis of IgPro20, a Subcutaneous Immunoglobulin, in Japanese Patients With Primary Immunodeficiency

Calidad de vida de los pacientes con inmunodeficiencias primarias de anticuerpos

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