Research FOR Patients
-For an informed and empowered opinion-
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In 2012, MDS UK Patient Support Group started a research to assess the needs of patients suffering from MDS in the UK. To date, this is the largest UK-specific research ever conducted focusing exclusively on needs, experience and quality of life of MDS patients. The aim of the survey is to better understand the impact of MDS on patients’ quality of life and to ultimately improve the care and support offered to MDS patients.
Thus far, the progress of the survey has been positive; we have collected results from 171 participants across UK covering all age groups and including patients without access to the internet.

The following report has been compiled by Raqeebah Agberemi.

Based on our survey, 83% of the participants are over 65 years old. This correlates with data published worldwide which states that 85% of MDS patients are 65 years and above. The median age group for MDS diagnosis is 74 years old. Based on our survey, the calculated median age is 70.

MDS Treatment

Development of treatment for MDS has made extraordinary progress over the past 10 years and there are no signs of this progress slowing down. A pioneering drug, Azacitidine which was made available in February 2011 UK for patients living in the UK with intermediate and high risk MDS was developed to help slow the progression of the disease while Lenalidomide has been effective for patients with the del 5q syndrome.

What do UK MDS patients say about the treatment options provided at the time of diagnosis?

53% reported being placed on Watch & Wait
47% reported being placed on active treatment or supportive care

More than half of the participants were told they were on Watch & Wait status. Being placed on Watch & Wait can be extremely stressful due to the uncertainties about the disease progression therefore adding to the worry that comes naturally with being diagnosed with MDS.

Question: How frequently did you think about MDS in the last 4 weeks? (The traffic light colours of green, yellow/amber and red are used to encode positive, neither positive or negative and negative responses.)

Question: How frequently did you think about MDS in the last 4 weeks? The traffic light colours of green, yellow/amber and red are used to encode positive, neither positive or negative and negative responses

More than 50% Watch & Wait patients thought about MDS to a significant extent compared to those placed on active treatment or supportive care (see graph below)

Reaction to being placed on Watch & Wait differs amongst patients, some patients are able to cope well with it. However, some may suffer from anxiety or depression as a result of being placed on Watch & Wait. Anxiety or depression might affect some aspects of their lives; it might lead to difficulties relating to their work life thus resulting in temporary leave of work or reduction in working hours. This might have some financial consequences to the patient.

The feeling of being anxious or depressed is aggravated by the lack of information at the time of diagnosis. Based on our survey,
38% Watch & Wait patients did not receive any written information at the time of diagnosis
43% Watch & Wait patients received minimal verbal information at the time of diagnosis

These figures illustrate the importance of providing adequate information to patients. If patients are provided with information in a patient friendly and personalised manner at the earliest stage of diagnosis, this might reduce the worry and help them cope well with being placed on Watch & Wait. Likewise, it will reduce the time a patient spends in consultations with the clinical team, or even with a counsellor, thus freeing up time to see other patients.

When asked about the greatest challenge of having MDS, Watch & Wait patients said:

‘‘The Watch & Wait policy. Regular 6x weekly visits to the hospital for blood tests then lack of feedback on the results’’
‘‘The uncertainty over whether there will be progression of the disease’’
‘‘Watch & Wait is a bit like having a sharp sword hanging about your head. It seems to get lower every time you are heading for your next blood test’’

In comparison, patients on active treatment/supportive care said:

‘‘The side effects of Azacitidine’’
‘’The disruption to our lives. Unable to plan ahead as Chemo dates can change if my blood is not right. Having platelets every week is a real nuisance’’
‘’Waiting 8 hours for blood transfusion’’

Support for MDS patients and carers

There is a constant need to access information and advice for MDS patients and their carers. Access to these services provides them with knowledge as they face several challenges throughout their MDS journey. Access to a clinical nurse specialist, appropriate signposting to services and peer to peer support have been found to be useful for MDS patients.
We currently have local groups in several parts of the UK. If you would like to attend any of our meetings, please visit our page for further details or call us on 020 7733 7558.

Access to MDS Nurse or Haematology Clinical Nurse Specialist

Question: Do you have access to a specific MDS Nurse or Haematology CNS?

6% reported they had no access to a CNS but would like to see one 19% reported that they had never been offered this service
It is important that MDS patients have access to a Clinical Nurse Specialist (CNS) because they play a vital role in the management of patients concerns and support their health and wellbeing. We liaise with Clinical Nurse Specialists in several hospitals across the UK to provide assistance and to make it known that support and care is available for MDS patients.
According to the National Cancer Patient Experience Survey (NCPES), having a CNS is an important factor found to be positively associated with a better patience experience.1
To understand the importance of CNSs, we divided the patients who answered the question, ‘’Do you have access to a specific MDS Nurse or Haematology CNS?’’ into five categories based on their level of worry.

Question: How frequently did you worry about MDS in the last 4 weeks? (The traffic light colours of green, yellow/amber and red are used to encode positive, neither positive or negative and negative responses.)

40% of those who had no access to a CNS but wants to see one and 52% of those who had never been offered the service, worried about MDS to a significant extent. The lack of access to a named CNS aggravates the emotional impact of MDS and the findings of our survey illustrates this.

MDS patients are often confused at the time of diagnosis mainly due to the fact that they have never heard of disease; having a CNS as a main point of contact makes it easier for patients to ask questions pertaining their diagnosis and treatment thus reducing the emotional impact of MDS. CNSs can also recommend additional support services to patients should they need it. Likewise, having access means that CNSs can quickly recognise any developing issues that may require attention thus potentially avoiding any major problems.

As the ageing population continues to increase, so will the challenge of supporting patients with MDS. The availability of treatments and development of new ones means that patients will live longer with the condition thus illustrating the importance of CNS as patients will need continuous support over the years.

Information about MDS UK at the time of diagnosis

Question: At the time of diagnosis, did you receive information on MDS UK Patient Support If not, how did you hear about MDS UK Patient Support Group? 

More than half of the participants said they did not receive any information on MDS UK at the time of diagnosis.
Half of the participants who had not received information about MDS UK, learnt about MDS UK via the internet.

Due to lack of information on MDS at the time of diagnosis, patients and carers have to take active steps when trying to find out more information about MDS. This makes them vulnerable to coming across unreliable, inaccurate and out of date online information.

Recommendations

In the long term, providing information at the earliest stage of diagnosis to all patients can really save substantial time and concern to all involved (patients, families, clinical staff).
Practical Suggestion: Some haematologists take it a very helpful step further: after seeking express consent from the patients, they copy MDS UK Patient Support Group into the patient’s clinic letter requesting us to send information to the patients. This step takes only one minute during consultation and ensures no patient goes potentially unsupported.

Summary of findings

  • Adequate provision of information at the earliest stage of diagnosis should be provided to Watch & Wait patients to help them better understand diagnosis and cope better with it.
  • Emotional and psychological support should be offered at the earliest stage to Watch & Wait patients who need it in order to help them navigate some of the challenges they might be facing.
  • Provision of information at the time of diagnosis is important to prevent patients from becoming vulnerable to inaccurate and unreliable information on the internet.
  • All MDS patients should have access to a clinical nurse specialist who can provide support following their diagnosis.

MDS UK May 2018 Newsletter

This article was first published in the 8th Edition of the MDS UK Newsletter. If you haven't received it, please contact us.
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