CONTENTS:
When and Why You Should Ask For A Second Opinion
By Jennifer DiRaimo
It is not uncommon for patients to seek a second opinion regarding their medical care. Particularly with experts in a certain area, the knowledge they have can be helpful to ensure that an existing treatment plan and diagnosis in place is correct. A second opinion can bring peace of mind and even contribute to an individual’s wellbeing. However, many ITP patients and their families are often not sure how best to seek a second opinion. In this month’s e-News, we will share tips from hematologist and PDSA Medical Advisor Terry B. Gernsheimer, MD on when, why, and how you should ask for a second opinion regarding you or your family member’s immune thrombocytopenia (ITP) management.
Dr. Gernsheimer remarked that nowadays, unfortunately, it is not very common for hematologists to look at their patients’ blood smear under a microscope to view their platelets directly. She shared, this is so important because it provides insight into the underlying cause of a low platelet count: “A good hematologist knows to go down [to the lab] and look at the blood smear.”
One of the first questions Dr. Gernsheimer shared that should be asked when getting a second opinion is, “Is this really ITP?” Up to 15% of ITP patients are misdiagnosed, and in fact, have another condition that causes a low platelet count. It is important to know whether there is increased platelet destruction, increased splenic sequestration (platelet storage in the spleen), decreased platelet production, or a combination of these. Dr. Gernsheimer suggested talking to your doctor to see what has been ruled out in terms of other causes of a low platelet count. While it’s not possible to rule out all potential causes of a low platelet count, your hematologist should ask about other usual suspects, like certain exposures to medicines and infection. She highlighted the importance of feeling connected to your hematologist and if you are still receiving the same treatment for your ITP and your platelet count remains low or continues to fall, a second opinion may be helpful.
When and why to think about a second opinion if your hematologist has not:
- Looked directly at the blood smear, as this can sometimes reveal the underlying cause of a low platelet count.
- Asked if you have a family history of low platelet counts or tried to determine if you have always had a low count, as you could have an underlying inherited platelet disorder that you were born with.
- Asked about recent exposures to toxins, new medicines, vaccines, vitamin deficiencies, infection, bone marrow abnormalities, and liver disease, as you could have a secondary cause of ITP.
- Adjusted your management and your platelet count continues to fall or does not improve with treatment, as they may not be aware of all the various treatment and management options for ITP.
- Made you feel like you have a good connection with them, as it is important to have a good relationship with a provider who may be in your life for a while.
When asking for a second opinion, Dr. Gernsheimer suggested there are several questions you should consider asking your potential new provider. It is also helpful to know if the potential new provider is interested in listening to the information you want to share with them, and if you have questions, will they give you the time and space to ask about what you need? And will they be available if there is ever an urgent issue with your ITP? It is also valuable to ask if a potential new provider would be willing to collaborate with a hematologist who is an expert in ITP if they are not. This is important because many hematologists are also oncologists, and the majority of their patients are cancer patients, not ITP patients. They may not be as well informed about standards and recommendations for managing ITP compared to a hematologist who primarily treats ITP patients and their families.
What should you look for when getting a second opinion?
- What is the experience level of the provider in managing and treating ITP patients?
- How many ITP patients does the provider have?
- Will you be able to participate in shared decision-making and be able to ask questions?
- Is there a plan for when you need to reach them in an urgent situation?
- Are they willing to collaborate with an ITP expert?
Dr. Gernsheimer concluded that an ITP patient and their caregivers should never be afraid to ask for a second opinion—ever. You should not be concerned with offending your current hematologist as second opinions are very common and can be helpful not only to the patient and their caregivers, but also to the provider. She also shared that there’s no need for concern that your current hematologist will refuse to see you or your family member if you seek a second opinion. If any physician refuses to see you when you ask for a second opinion, they may not be the right provider for you. You may want to find someone else who will have your best interests at heart.
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