Patient Experience Survey

The 2017 patient survey from Leukaemia CARE is now live and they need your help to improve the experience of blood cancer patients!

In 2016, Leukaemia CARE partnered with Quality Health to develop the 2016 blood cancer patient experience survey. 2,519 patients shared their experience of blood cancer from diagnosis through to living with and beyond cancer.

This survey has helped to provide evidence to the extent of issues faced by blood cancer patients in the UK and inform the work at Leukaemia CARE. The leukaemia-specific findings and subsequent recommendations for improvements were highlighted in the ‘Living with Leukaemia’ report – those relating to diagnosis were used to inform the #SpotLeukaemia campaign for blood cancer awareness month.

This year Leukaemia CARE’s patient survey is running again from September through to Saturday 16th December and I want you to share your blood cancer experience.

The 2017 patient survey aims to:

1. Provide a deeper understanding of the issues faced by blood cancer patients, particularly those diagnosed with rare types of blood cancer.

2. Give a greater picture of regional differences between patient experiences.

3. Understand which patient experience issues are getting worse by comparing results to those from 2016 – this will then prioritise the focus of future campaigns.

With your help, Leukaemia CARE will have a greater understanding of the issues faced by blood cancer patients. This will help direct their future work and bring about changes where they are most needed.

Share your experience. Inform the work. Improve the future experience of blood cancer patients.

TAKE THE SURVEY – CLICK HERE

If you would like to request a hard-copy of the survey, please call 01905 755977 or email advocacy@leukaemiacare.org.uk

Leukaemia Care: I wasn’t born yesterday

Leukaemia Care has published this outstanding report, it’s well worth a read. As a trustee of Leukaemia Care and a CML patient, I’m incredibly proud of the hard work that has gone into publishing this. Thank you. Kris
What’s the problem?
Research from sources such as Macmillan and Public Health England has shown that cancer survival worsens with increasing age. Older patients (those aged 65 and over) make up just under two-thirds of all leukaemia cases (64%). However, this group accounts for 81% of all leukaemia related deaths. The new report ‘Leukaemia: I wasn’t born yesterday’ looks at the challenges faced by older patients and makes recommendations for improvements.

What this means for patients
As part of our report, we undertook a survey of over 1,300 leukaemia patients, to uncover the inequalities that are impacting on cancer survival and patient experience.

Based on what you told us, we have made the following recommendations:
1. Improved awareness of the signs and symptoms of leukaemia, amongst the public and healthcare professionals, including the link between leukaemia and age.
2. Access to a clinical nurse specialist from diagnosis onwards for all patients.
3. Tailored information and support for patients, based on their individual need, not age. This should include guidance on finding accurate information online.
4. Equal access to clinical trials for patients of all ages, to ensure that robust evidence is available on the most appropriate treatment

What can you do to help?
1. Download a copy of the report (PDF)
2. Share the report on social media to help spread the word
3. If you’re aged 65 and over and have been affected by leukaemia, get in touch with us to share your story by emailing advocacy@leukaemiacare.org.uk or calling 01905 755977
4. Keep up to date with our campaigns by signing up to receive email communications from LC.

What is MY PCR survey…

A survey worth spreading…Kris

Dear PCR Campaign Supporters,

As many of you know, 9/22 was World CML Day, the date that symbolically represents the genetic change of Chromosomes 9 and 22 that causes CML. This also marks the one year anniversary of the “What is MY PCR” campaign. In honor of these two events, we are excited to announce the official launch of the PCR Campaign Impact Survey!

Our goal is to gather feedback from you as campaign participants to help us measure our impact and identify areas in which we can strengthen the campaign in 2014. Your voice is critical to shaping this campaign, and we want to hear your feedback! The survey is posted on the campaign website http://www.whatismypcr.org and we encourage you to share this opportunity within your networks as well.

The survey will be open from September 2013 to December 2013. At the conclusion of the survey, we will compile the results into a report in early 2014 to be shared with you and your networks. Currently available in English, Spanish and Thai, we will continue to add translations over the next two months as we receive them from the PCR campaign partners.

We look forward to receiving your feedback. Complete the online survey now!

http://www.surveymonkey.com/s/WhatIsMyPCRImpact

Best wishes for World CML Day,
From PCR Campaign Headquarters

Update on the International CML patients adherence survey

Received today from Giora at the CML Advocates Network, a fantastic study and well worth reading:

It is my great pleasure to update you on the great success and the recognition that our adherence survey has received at the EHA conference last weekend in Stockholm.

Here are some key facts related to our study:

• We launched the survey on World CML Day, 22.9 2012. We had 2 arms – the on-line survey where patients were recruited by CML patients groups and CML forums on the Internet, and the same questionnaire as hard copy, which was distributed by physicians in 3 countries: France, Germany and Italy. The survey was prepared in 12 languages. The on-line recruitment closed on 3 January 2013, and the deadline for paper questionnaires was 31 January. In just a short time, we have received 2151 responses on-line from patients in 79 countries, and 395 responses on the hard copy questionnaires. We couldn’t have done it without your help and support.

• We submitted an abstract to EHA and it was one of the 8 % which were accepted for an oral presentation in the CML scientific session. I had the honour to do the presentation at the EHA this last Sunday morning, 16 June. You can find the abstract here: http://www.cmladvocates.net/news/3-news/newsflash/250-eha-2013-adherence

• For those of you who are interested to see the web-stream of my presentation and see the slides which contain some of the main findings and the messages we wanted the haematologists to understand, you can go to the following link and see the slides and hear my talk and see some pictures: http://www.cmladvocates.net/3-news/newsflash/261-adherencesurvey

• You can also download the PPT file of the presentation there, so feel free to use it and to translate it. You can also hear my talk about the results of the survey, which I gave at CML Horizons 2013, which brought together more than 100 CML advocates from 60 countries, and was held in Prague last month. http://cmladvocates.net/cmlhorizons2013

• Most of the patients groups in many countries did an outstanding and remarkable work on recruiting patients to answer the on-line link. Some of them have translated the survey to their languages, printed it and had patients complete them, and then inserted the data to the on-line link. Some of these groups who did a remarkable work are: The MAX foundation, the patients groups in Thailand, Lebanon, Serbia, Slovenia, Venezuela, Philippines, Mexico and many more. Thank each of you for your help and support!

• We have also received a great support from the following CML forums on the internet and many of the patients who visit these forums have completed the survey: The Asian CML support group lead by Anjana and Roy, The UK CML support group led by Sandy Craine, the NewCMLDrug website and forum Led by Jerry Mayfield, and the CML2 forum. We also received support from Novartis, Pfizer, BMS and Ariad to contract a logistics agency that helped to collected and analyse the questionnaires.

• Special thanks to those who worked very hard to carry out the hard copy survey in 3 countries:
  • Mina Daban the head of the LMC patients group in France and the FI LMC- the CML haematologists group in France.
  • Felice Bombaci the head of the Italian CML patients group and the GIMEMA group – the Italian CML Doctors.
  • Jan Geissler of Leukemia Online, the German CML patients support group, and to the German CML Study group.

• Special thanks to the advisers who have accompanied us during this special journey: Joelle Guilhot from France, Lina Elliason from the UK, Fabio Efficace from Italy and Verena Hoffmann from Germany. These experts advisers are all involved heavily in CML research and publications, and their experience has contributed a lot to our success.

• This is no question the largest study done with CML patients on any topic, and the largest study ever done on adherence to medications like TKIs. The data base is huge and we have so far done only initial descriptive analysis, a submission to EHA, and a publication on CML Advocates Network. In-depth multivariate analysis has just started now, with collaboration of the GIMEMA work group in Italy led by Fabio Efficace.

I am very glad that with your help we have increased the recognition of the CML community as one of the most active worldwide patients communities. Thank you all so much. We will keep you updated on further developments as we are now aiming to prepare a publication at one of the scientific magazines and also submit an abstract for ASH.

TKI survey on behalf of CML Advocates Network

A request from the CML Advocates Network who I fully endorse and would ask you complete the survey. Many thanks, Kris

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Imatinib, dasatinib and nilotinib are a tyrosine kinase inhibitors (TKIs) that have been established as effective therapies in chronic myeloid leukemia. While imatinib (marketed as Gleevec/Glivec), and in some markets nilotinib (marketed as Tasigna) as well as Dasatinib (marketed as Sprycel), have been available for some years, non-original copy versions of these drugs have also been provided to CML patients in a number of countries. With the patent ending on Glivec/Gleevec from 2013 in some markets, the use of generic TKIs in CML is becoming more and more widespread.

With the CML Horizons 2013 patient conference putting a spotlight on the situation of generics and copies in CML therapy, this survey intends to understand the availability of original TKIs and other non-original TKIs for the treatment in CML in countries all across the globe. It also aims to understand how CML patient groups are addressing the issue of quality assurance when generics and copies become available.

This survey is run by the CML Advocates Network without any commercial interest and without support from any pharmaceutical company. The results of this survey will be presented to the community at the CML Horizons 2013 meeting in May.

It should take 10-15 minutes of your time to complete the 10 questions. We would like to cover as many countries as possible – your contribution is greatly appreciated and will help us a lot!

Please respond to the survey here: http://www.cmladvocates.net/tkisurvey
(and please also respond if NO generics/copies are available in your country, which is equally important to know)

Can you please respond latest by 12 April 2013?

Many thanks and best wishes,

Jan (on behalf of the CML Advocates Network)