What do UK MDS patients say about the information they receive at diagnosis?

According to UK MDS Survey:

  • Over half of respondents agree that their needs for verbal information on MDS have been met sufficiently. For the remaining 46% the provision of verbal information could be improved on.
  • Usefulness ratings of verbal information provided vary across patients.
  • Over one third of respondents have not been provided with any written information on MDS
  • Majority of those who received the written information, rate it as highly useful

provision of verbal information

 

usefulness of verbal information

 

provision of written information

usefulness of written information

 

What can you do to ensure you receive the information you need?

There are many different reasons why MDS patients may not be fully satisfied with the information they receive on MDS, such as the complexity of their diagnosis, unfamiliarity with the condition or medical terminology, short consultation time or information overload. Associated emotions of shock, uncertainty and feeling overwhelmed may also get in a way.

Patient also differ from one another in terms of the amount and detail of the information they want and at what stage.

One way to ensure you receive the information you need, and when you need it, is to ask questions that are relevant and matter to you. However, putting your concerns into words and finding the right questions to ask isn’t always easy.

To help MDS patients gain greater control over the flow of information in consultations, French and Australian researchers put together a list of over 50 questions, which were found to matter most to MDS patients and their family members in those countries. Please find out more about this research project HERE.

Using this list could help you decide what questions to ask your haematologist at your next consultation to better understand your diagnosis, treatments and consequently to make more informed decisions about your health care.

Please, see the QUESTION PROMPT LIST below to identify the questions that matter to you. Write them down together with any other questions that you have. Finally, if you can, bring someone with you to the consultation to take notes and to help you make sense of what’s been discussed.

Remember, our office is here to provide further general information on MDS and services that can help you. We don’t give clinical advice, as only your clinical team can do that, but if there is anything you would like to discuss with us, please don’t hesitate to call us on 020 7733 7558.

 

Question Prompt List for MDS:

Diagnosis
How common is my MDS? How many people get it?
Is my MDS a cancer?
What increases the risk of developing MDS?
Are other members of my family at risk of developing MDS?
What is anaemia?

Tests
Do I need any further tests?
What will more tests tell us?
Are the tests performed here?
Will I need a bone marrow biopsy?
When will I get the results?
How will I get the results (over the phone, at the next appointment, etc.)?
Can you explain my pathology report (laboratory test results) to me?
What follow-up tests will I need, and how often will I need them?

Prognosis and evolution
How bad is this MDS?
How high is the risk that my illness will develop into leukaemia?
What symptoms will the MDS cause?
Will the treatment cure the MDS or just control it and manage symptoms?
How long do people with my type of MDS usually live?
Is the treatment going to improve my chances of longer survival?
How likely is it that the treatment will improve my symptoms?
Is it worth going through treatment?
Will the treatment or illness reduce my sexual drive?
Is there anything that I can do to help myself? E.g. diet, work, exercise?
If I get new symptoms or side effects or existing ones worsen, what should I do?

Treatment options
Is it necessary to have treatment right now?
Do I have a choice of treatments?
What are the pros and cons of each treatment option?
What can I expect if I decide not to have treatment?
How much time do I have to think about this?
What is your opinion about the best treatment for me?
Will I need chemotherapy?
Will I need a bone marrow transplant?
Will I need any additional treatment after this?

Treatment plan
What is the treatment schedule, e.g. how many treatments will I have, how often, and for how long will I have treatment?
Where will I have the treatment?
Do I need someone to come with me?
What are the do’s and don’ts while having treatment?
What are the side effects?
Will I lose my hair?
Are there long-term side effects from the treatment?

Clinical trials
What are clinical trials?
Are there any clinical trials that might be relevant for me?
Will I be treated any differently if I enrol in a trial?

The team
Who will be coordinating my overall treatment and follow-up care?
Whom should I call with questions or concerns during non-business hours?

Support
Where can I find more information about my MDS? E.g. its treatment, or clinical trials?
Are there any complementary therapies that you believe may be helpful?
Are there any complementary therapies that would be bad for me?
Is there someone I can talk to who has been through this treatment?
Are there services/support groups that can help me and my family deal with this illness?
Will I be able to work, exercise, and perform my usual activities?
Will I be able to eat as usual?
Can you recommend a social worker to help me find support services?

 


What MDS UK is doing to improve the situation?

Haematologist's ability to effective identify and meet the information needs of their patients can also be enhanced through the Doctor-Patient communication skills training. Currently, it is recognised that relatively little time is dedicated to building on such crucial skills in medical education. MDS UK is supporting the development of the new training opportunities for haematologists and European Haematology Association (EHA) has shown some interest in this area. Together with other patient organisations, MDS UK is keen to collaborate with EHA on a project that could improve the current matters and lead to improvements in patient satisfaction with the information they receive.

The topic of Doctor-Patient communication is particularly relevant in UK, considering the heavy pressure on the NHS and the difficult circumstances that staff work in, when consultations may be shorter than planned. Advanced communication training skills for haematologists could improve this situation for both, patients and physicians by maximising time and efforts. Furthermore, as patients and their families learn more about their health problems on-line, it needs to be revised how this information is discussed with physicians.

We'll keep you informed on the progress in this area.

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