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Ed Forum 2016 SGL

2018 Global WM Patient Survey Results are Now Available

Oct 10, 2018

Every two years the Lymphoma Coalition conducts a global patient survey on Lymphomas and CLL. As in prior years, the IWMF encouraged WMers to participate, and your 2018 response was overwhelming. Of the 6,631 total global responses, 764 or 11.5% were from WMers; that’s quite impressive, since WM makes up only 1.5% of blood cancer patients.

The results have been compiled in a 40-page report, which is now available for viewing – so get a cup of tea or coffee and settle in to review it. We won’t try to summarize all of it, but here are a few takeaway points:

Who took the survey?

  • 89% of WM respondents were responding for the first time 
  • ​59% male/41% female, right in line with disease incidence
  • Age split also in line, although skewed younger as the survey was online
    • 6%: 40-59 years old
    • 44%: 60-69 years old
    • 40%: 70+ years old
  • Respondents were from 37 countries (the survey was translated into 18 languages)
    • 64% US
    • 8% Canada
    • 8% UK
    • 4% Australia
    • 3% China
    • 2% New Zealand
    • 1% France
    • 1% Germany
    • 1% Spain
    • 1% Mexico
    • 4% split among the remaining 27 countries
  • Year of diagnosis ranged from before 1995 to 2017
    • 3%:  Prior to 1995 
    • 7%:  1996-2002
    • 23%:  2003-2009
    • 53%:  2010-2016
    • 14%:  2017
  • Age at diagnosis ranged from:
    • 40-59:  16%
    • 60-69:  44%
    • 70+:  40%
  • Where respondents were in their experience with WM varied widely
    • 2%:  newly diagnosed
    • 22%:  diagnosed and in treatment
    • 8%:  maintenance treatment
    • 19%:  watch and wait
    • 33%:  in remission
    • 15%:  relapsed and in treatment
    • 1%:  transformed

What’s covered in the survey?

The survey covers six key areas:

  1. Demographics
  2. Patient Information, Guidance and Support
  3. Fear of Relapse
  4. Fatigue
  5. Living with Side Effects
  6. Barriers and Impediments

Some highlights that might intrigue you to read more:

  • The top five physical conditions affecting well-being after diagnosis were:
    • Fatigue
    • Muscle weakness
    • Changes in sleep patterns
    • Problems fighting infections
    • Night sweats
  • The top three psychosocial issues affecting well-being during treatment were:
    • Anxiety
    • Changes in relationships with loved ones, friends or co-workers/social life
    • Stress related to financial issues

Other areas of concern that were cited:

  • Effective communications with doctors about side effects
  • Barriers to receiving treatment
  • And much, much more!

To each and every one of the 764 WMers who participated in this study, thank you!

Enjoy your review of these results. Click HERE to read the full report.  

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