CONTENTS:

Treatments for Immune Thrombocytopenia (ITP) Place a Burden on Patients and Impact Quality of Life: Insights from a Social Media Listening Exercise

Doctor patient

Burdens to the quality of life (QoL) of ITP patients are not always captured in interactions between a patient and their healthcare provider. This study assessed posts on various social media platforms, including Facebook, X (formerly Twitter), Instagram, Reddit, and YouTube, to capture insights, perspectives, and unmet needs of ITP patients. Publicly available, open conversations related to ITP that took place between March 2021 and February 2023 were examined, resulting in a total of 1,085 relevant conversations. Over 70% of these conversations were from ITP patients with chronic ITP, and 70% were written by female patients.

The topic that was most discussed was related to treatment experience. Some positive stories talked about how effective a particular therapy was and the lack of side effects they experienced. On the other hand, negative topics included side effects (particularly for steroids), a specific treatment no longer being effective after long-term use, and a treatment being completely ineffective. Another discussion topic was about worry that a patient would end up losing response to their ITP treatment or develop a tolerance. ITP patients who were in remission after first-line therapy tended to focus on positive experiences related to the effectiveness of a therapy. However, those with chronic ITP who failed multiple therapies shared that the first-line treatments were not effective over the long term and hoped for a therapy that could cure their condition.

Some ITP patients also discussed the emotional burden that their condition caused, particularly related to the uncertainty that a particular therapy could treat their ITP. The unpredictable nature of these treatments and the possibility that patients would go into relapse caused many to feel frustrated and hopeless. Many posts also discussed how ITP symptoms, such as bleeding, bruising, and treatment side effects severely impacted their physical health, and that low platelet counts and therapies led to fatigue and exhaustion.

Lastly, some social media posts also raised concerns that knowledge and awareness of ITP was low among healthcare providers who were not experts in this field. Additionally, some patients shared that their physicians were concerned only about raising their platelet counts, often discounting the patient's own treatment preferences. Along a similar vein, patients shared that having a supportive, positive experience with their healthcare provider improved their emotional wellbeing.


Ask the Experts

This month's e-News includes patient questions about various topics important to the ITP and other platelet disorders community.

As the measles outbreak that started in Texas in late January continues to grow and now spans multiple states, ITP patients and caregivers have contacted PDSA with their questions and concerns about getting the Measles, Mumps, and Rubella (MMR) vaccine. If you have a question that you would like answered by one of PDSA's medical advisors or other experts, please email your question to: pdsa@pdsa.org and enter "Ask the Experts" in the subject line.

QUESTION:

Do we have any research from the medical advisors on ITP and MMR (measles, mumps, rubella) vaccine? With the outbreak of measles here in Texas, I was going to schedule a MMR vax as recommended for my age, but one of the first questions the pharmacy asked is if you had a history of ITP. I then went to the CDC website, and it similarly mentioned ITP or low platelets as a side effect of MMR. (adult with ITP)

QUESTION:

Hello, I recently found out that I don’t have any antibodies for measles. Wondering if anybody here has had any experience getting the MMR vaccine with low platelets? Also weigh the options of what’s riskier for my health – the vax or just rolling the dice. (adult with ITP)

ANSWER:

There is an associated risk of ITP caused by the MMR vaccine in young children (not adults) usually developing 2 to 6 weeks after the vaccine. However, the risk of ITP with vaccine is 200-fold lower than with natural infection.

Data currently favors checking vaccine titers that are considered protective and if not immune, revaccination would be recommended.

For patients with active ITP, there is no worry that the vaccine is going to cause ITP (since ITP is already active). There could be a transient worsening of thrombocytopenia as with any other vaccine.

For patients who had MMR-associated ITP that is in remission, check for immunity first and if not immune, a booster is recommended.

For patients who had non-MMR ITP that is truly in remission, data does not exist about the likelihood of MMR inducing a recurrence of ITP as compared with other vaccines. Checking titers is a good first step in this group and then vaccinating if in a high-risk situation in which MMR booster is being recommended.

In all cases, platelet counts should be checked about a week after vaccination.


To learn more about the connection between vaccines and ITP, check out PDSA's podcast episode: Clearing the Confusion on ITP and Vaccines: Weighing the Risks and Understanding the Benefits.