BACKGROUND: Primary immunodeficiency disease (PID) is a genetic condition characterized by a nonexistent or nonfunctioning part of the immune system. Individuals with PID are at risk for repeated and severe infections that are difficult to treat and may be fatal, if untreated. Immunoglobulin replacement therapy (IGRT) is a commonly used treatment for some types of PID, and can be administered at home or at a medical facility, either intravenously (IV) or subcutaneously (SC).
OBJECTIVE: To understand the humanistic impact associated with IGRT within a broader study that developed and evaluated a novel patient-reported outcome measure of overall patient experiences with IGRT (the Ig Patient Experience with Treatment [IgPET]).
METHODS: Researchers conducted phone interviews of Englishspeaking individuals aged ≥ 17 years who received IGRT for PID in the United States. The interviews included concept elicitation focused on participants’ experiences with IGRT and cognitive debriefing of the IgPET. Interviews were audio recorded and transcribed for qualitative analysis.
RESULTS: Twenty-one interviews were conducted. Patients were mostly female (n = 19, 90.5%), white (n = 20; 95.2%), and college educated (n = 14, 66.6%). The mean age was 42.5 (range 17-70) years, and mean time since PID diagnosis was 8.3 (range 1-26) years. Approximately half of the patients received IV treatment and half received SC treatment; 76.2% received IGRT at home. Although patients overwhelmingly stated that they did not consider their IGRT to be burdensome, many described economic and humanistic impacts associated with their care. These included obtaining or maintaining health insurance coverage; skipping treatments due to costs and lapses in health insurance coverage; interference with work and productivity due to frequency of treatments and side effects of IGRT; time required to order, prepare, set up, and schedule infusions; and time required to travel to a medical facility for IGRT. Worries about insurance coverage were similar regardless of IGRT mode of administration.
CONCLUSIONS: This qualitative study suggests that patients generally considered IGRT to be lifesaving rather than burdensome. Nevertheless, patients described humanistic implications associated with IGRT, including worries about insurance coverage, productivity loss, and time spent planning and receiving infusions; these responses suggest areas for improvement in IGRT.
