PDSA e-News: May 28, 2021

Sharing The Patient Perspective Of Unmet Needs In Among Families Living With Immune Thrombocytopenia

mother with childPDSA’s research team was invited to contribute an article to the Annals of Blood, a scientific journal that devoted an entire issue to immune thrombocytopenia (ITP). Our article focused on the patient’s perspective on living with ITP and their perceived unmet needs. The article highlighted how patients with ITP face a complex set of challenges. The burden of ITP impacts the overall health-related quality of life of patients and their families. The patients’ perspective on unmet needs, and the physical and emotional burden of disease were discussed in an attempt to illustrate areas where healthcare providers could consider enhancing their current approach to managing patients with ITP. The article emphasized that patients want their voices heard and their experiences with ITP acknowledged beyond simply treating the platelet count. The study also pointed out that further investigations are required to clarify the emotional and physical consequences of living with ITP, including the nature and source of pain, anxiety, depression, and fatigue reported in both adults and pediatric patients with ITP.


Comments from PDSA’s Medical Advisors:

The PDSA article includes video descriptions of individual cases of ITP. It draws on the Natural History Study initiated in 2017 which has enrolled approximately 1600 patients. A major theme is how individual cases of ITP are with many different factors including but well beyond age and gender influencing the patient experience. As data continues to be accrued, more and more findings will come out of it. In turn, patient experiences may be increasingly linked to the biology of ITP such that eventually it may be easier to anticipate given journeys and thus how to manage them.

Additional IVIG benefits During A Global Pandemic

IVLast year, the authors of this short correspondence article wrote that SARS-CoV-2 (COVID-19) antibodies could be detected in intravenous immunoglobulin (IVIG) products using ELISA techniques that focus on antibodies with this specificity. They theorized that IVIG might help in the treatment of SARS-CoV-2 (COVID-19). However, they recognized that studies were needed, including those that test viral neutralization. In the correspondence article, the authors describe how they established a program for continuous monitoring of plasma donated in Spain, Germany, Czech Republic, Slovakia, and the USA to track the amount of COVID-19 antibodies present and the amount of such antibodies that made it into IVIG products. As COVID-19 continued to spread worldwide, they found that anti-SARS-CoV-2 antibodies increased over the last year consistent with the immune status of the general population. IVIG may be helpful as a tool to protect against COVID-19 infection among individuals who are immunodeficient and receive IVIG products to manage their condition. The authors conclude that it may be beneficial to monitor the presence of COVID-19 antibodies in IVIG.


Comments from PDSA’s Medical Advisors:

IVIG has not previously had antibody to SARS/CoV2 in it. Infected donors were likely excluded based on recent illness. Now, immune plasma, and presumably IgG concentrates derived from such donors in the form of IVIG, may play a limited role in managing patients with COVID 19. Nevertheless, as mentioned by the authors the spread of natural infection and vaccination will influence the prevalence and likely titers of anti-SARS/CoV2 neutralizing antibodies in the donor pool used to prepare IVIG. Whether the amount of anti-SARS/CoV2 neutralizing antibody administered during replacement therapy for immune deficiencies will be enough offer protection or mitigate disease severity is still conjectural but seems promising. If so, patients with acquired immune deficiencies due to hematologic malignancies or other disorders managed by immunosuppression that affects antibody production post vaccination (e.g. rituximab) would provide a larger potential population who might benefit from IVIG given in doses used to treat ITP. It is worth noting that this article is specifically pertinent to IVIG produced by Grifols. Whether all of their lots of IVIG or only some will have these antibodies and at what level remains to be demonstrated. Similarly some but not all IVIG in use in the United States may have some antibody at this time but this remains uncertain.


Special Thanks to our e-News Sponsor:
Amgen logo



back to top

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo