Frequently, patients may get overwhelmed by the information provided by the healthcare team and may not think of specific questions to ask during consultations or clinic visits. This is perfectly normal as these visits are often stressful, with complex disease and treatment related information.
In the following video, Professor Mittelman reviews his list of the 10 most important questions to ask your doctor or healthcare team.
Having a list of questions will help you prepare for your visits and may help you better understand your diagnosis, treatment options, and strategies for wellness. The following list was compiled by MDS patient groups in collaboration with clinicians and updated by the MDS Foundation’s Nurse Leadership Board.1,2
Not all questions may apply to your unique MDS journey, however, we hope this list will help alleviate some of the stress surrounding your diagnosis and discussions with your healthcare team.
Support groups and MDS experts recommend seeking an opinion from an MDS expert when it comes to rare blood cancers like MDS, as not all hematologists are MDS specialists. This can be particularly helpful to gain access to clinical trials.
Once treatment begins, you’ll need to know what to expect, how you can manage your health, and how your response to treatment will be evaluated.
A diagnosis of Myelodysplastic Syndrome (MDS) is a shock to anyone. The MDS Foundation is here to support patients and their families as they navigate their care options. We provide information about the disease, work with healthcare providers, and fund research.
The MDS Foundation strives to learn from patients’ experiences. In partnership with Clinical Care Options, LLC., the MDS Foundation surveyed patients with MDS about their perceptions of treatment and care. The following results showcase patients’ concerns during the treatment process and what they would like from their care team. Together we are ensuring the patient voice is heard!
Our goal, by sharing this information with patients, healthcare providers, and researchers, is to emphasize the patient experience and what can be improved.
A majority of patients feel their individual values and treatment goals are understood by their care team. Of these patients, more men felt understood than women. Most patients feel they are well informed about treatment options and the most appropriate treatments for their disease are provided by their care team.
MDS is a complex disease, taking many forms. The treatment options are just as varied and can be confusing. Survey results show that most patients have discussed multiple treatment options and diagnosis tools with their healthcare team.
When you are diagnosed with MDS, the last thing you want to think about is how to access treatment and the cost of care. Fortunately, most of the survey participants have easy access to care, and cost is a concern to less than half.
In partnership with Clinical Care Options, LLC.
Supported by educational grants from AbbVie Inc., Geron, and Karyopharm Therapeutics.
