Survey data collected by IDF in 2017 and 2018 points to several factors in adults with X-linked agammaglobulinemia (XLA) living in the U.S. that correlate with lower perceived quality of life. These factors include hospitalization, multiple chronic conditions or infections, and reliance on public insurance.
The new study, “Health-Related Quality of Life in 91 patients with X-linked agammaglobulinemia,” was recently published in the Journal of Clinical Immunology. The good news is that, overall, mental and physical quality of life were not significantly different for adult or pediatric patients with XLA compared to the general public. This finding means that the diagnosis itself does not necessarily lower patients’ perceived quality of life.
However, within the adult XLA population (58 individuals), respondents who experienced two or more chronic conditions (such as arthritis, asthma, or lymphopenia), were hospitalized, or had three or more infections within the last 12 months had a significantly lower physical quality of life than peers. Those with three or more chronic conditions also had a significantly lower mental quality of life. The most-reported chronic condition among this subgroup was chronic fatigue (78.5%). Sinus infection was the most common infection type among those with three or more infections.
Of note, adults with XLA who used public insurance experienced significantly lower mental quality of life than those using private insurance or a mix of private and public insurance. This correlation points to stressors unique to this group of patients as they navigate life with XLA.
The health and insurance-related factors uncovered in this study suggest a focus for the XLA community and their supporters in maintaining a high physical and mental quality of life for these individuals.