Abstract
ObjectiveWe assessed the health-related quality of life (HRQoL) in CVID adults receiving different schedules of immunoglobulin replacement therapy (IgRT) by intravenous (IVIG), subcutaneous (SCIG), and facilitated (fSCIG) preparations. For these patients, IgRT schedule was chosen after a period focused on identifying the most suitable individual option.MethodsThree hundred twenty-seven participants were enrolled in a prospective, observational, 18-month study. Participants received IgRT for at least 2 years. The first 6 months were devoted to the educational process during which the choices related to IgRT were regularly re-assessed, and the shift to alternative regimen was permitted. During the following 12 months, clinical data were prospectively collected, and only patients who did not further modify their IgRT schedule were included in the analysis of HRQoL measured by CVID_QoL, a specific instrument, and by GHQ-12, a tool to assess minor psychiatric nonpsychotic disorders.ResultsThree hundred four patients were included in the analysis. CVID_QoL global score and its dimensions (emotional functioning, relational functioning, gastrointestinal symptoms) were similar in IVIG, SCIG, and fSCIG recipients. Patients receiving IgRT by different routes of administration reported similar capacity to make long-term plans, discomfort due to therapy, and concern to run out of medications. Multivariate analysis revealed the GHQ-12 status, but not the IgRT mode of administration, as the major factor impacting on treatment-related QoL items, and a significant impact of age on discomfort related to IgRT.ConclusionsIgRT schedules do not impact the HRQoL in CVID if the treatment is established after an extensive educational period focused on individualizing the best therapeutic regimen.
Highlights
Common variable immune deficiencies (CVID) are a group of diseases whose complexity in clinical presentation and treatment poses difficulties in management [1]
The introduction of further therapeutic options, including the subcutaneous route of Ig administration (SCIG), which may be facilitated by human recombinant hyaluronidase, and the availability of formulations containing immunoglobulin at different concentrations have led to changes in the schedule of administration [4]
We have previously shown that such an health-related quality of life (HRQoL) elicitation did not reveal any influence of Ig administration schedule in an Italian cohort, using generic and disease-specific instruments [8,9,10]
Summary
Common variable immune deficiencies (CVID) are a group of diseases whose complexity in clinical presentation and treatment poses difficulties in management [1]. Since CVID patients require therapy for life, the acceptability of the different schedules and setting for Ig administration are considered important instruments to achieve adherence to treatment and in increasing health-related quality of life (HRQoL) in these patients [6]. As with other chronic conditions, treatment of patients living with CVID could impose demands on daily life to plan and selfcare management, as a result of the need to comply with complex therapeutic schedules, while balancing family or job commitments. This can result in a Bburden of treatment^ [11, 12]. Our own work indicates that patients with CVID manifest substantial restrictions and poor HRQoL, which worsen over the time, mainly due to CVID-associated clinical conditions [8,9,10]
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