Chronic Lymphocytic Leukemia patient survey points to a need for better patient education

[CLLerinOz]

The interim report of an ongoing survey of CLL patients demonstrates that over 60% of respondents were unaware of different CLL risk groups and that about 20% felt they had "not received enough information about CLL to make informed treatment decisions". 14% of patients surveyed "were unable to obtain answers to their questions" about treatment decisions.

The global survey aims"to better understand what CLL patients know about their disease, their perspectives on diagnosis and treatment, and their unmet needs to ultimately improve their care and outcomes."

It shows why having a good relationship with your physician and participating in a forum like this one is so important but it also indicates a need for better patient education overall.

The interim report includes the responses of 118 patients from March to 1 July 2022 in Europe, Latin America, USA, and Turkey and is being presented at the upcoming ASH 2022 conference in December. The survey hopes to receive 1100 responses by the end of 2022.

The report concludes:

"The lack of awareness about risk groups and their treatment implications highlights an educational gap. Likewise, the preferences to receive oral treatments and participate in treatment decisions may point to unmet needs among CLL patients. These results indicate that most CLL patients are satisfied with the amount of information they receive from clinicians, but many awareness gaps suggest better patient education is needed." (my emphasis)

Further details:

"Almost three-quarters of respondents (74%) relied on their physicians to answer their questions about CLL and its treatment, but notably 10% used online sources or social media, and only 1% used educational materials or treatment centers. Most patients (88%) wanted to be involved in treatment decisions, but fewer participated in their treatment decisions (65%)."

As well as asking patients how they access information about CLL, it also asks questions about their understanding of their condition and their treatment preferences. So far, it has found that:

62% of patients were unaware or unsure of the existence of different CLL risk groups

63% reported a lack of awareness about laboratory tests to determine risk

67% reported a lack of awareness of the treatment implications of different risk levels

74% of respondents believed testing all patients to determine their risk is important

87% preferred oral medications but there was little difference in their preference for fixed duration (preferred by 54%) vs treatment until progression (preferred by 47%)

On the question of treatment side effects, the survey found that, while 91% discussed treatment side effects with their physicians, 42% were seeking additional information. "28% of patients indicated they would stop their treatment if they experienced unbearable side effects, and 12% had experienced such side effects. Among those that stopped treatment for these reasons, 76% believed their control of their CLL suffered. Notably, 92% of respondents were not worried about discussing side effects with their clinicians for fear of treatment discontinuation. Finally, 56% and 36% of respondents indicated treatment unavailability and financial issues had a high impact on treatment discontinuation."

The survey also examined the impact of COVID-19 on CLL patients:

95% of respondents received COVID-19 vaccination but "12% of respondents were unaware that CLL increased their vulnerability to infection"

"78% of respondents reported that their treatment was not negatively impacted by the pandemic"

3540 Preliminary Results of Voice (Virtual Opinions poll Independent Centered on CLL patients’ Experience): A Global Survey to Assess the Disease-Specific Knowledge and Perspectives of Real-World Patients with CLL - Constantine S. Tam et al

ash.confex.com/ash/2022/web...

[seelel]

Interesting statistics, but I think an umbrella statistic of how many of the patients' doctors were CLL specialists might have some relevance to the patient's level of knowledge and engagement.

Generally speaking, you would expect general haematologists and oncologists to engage less with their patients on the given topics than a CLL specialist.

[CLLerinOz Administrator in reply to seelel]

There's probably a range of reasons why so many patients had gaps in their understanding of CLL. Along with the reason you've identified, I suspect that the time that physicians, including CLL specialists, have available for extended discussion and individual patient education is also a factor. If this sort of research can help to press the case for more coordinated patient education, that'll be a good outcome. In the meantime, our community does a great job of filling in a lot of those gaps for its members 😀

[Big_Dee in reply to CLLerinOz]

Hello CLLerinOz

I concur with the doctor's time constraints. The H/Os at my hospital have 45 minutes for first visit and 13 minutes for follow-up visits. The first visit is spent telling you that you have the big "C" illness and calming the patient and maybe explaining test results for CLL diagnose. My H/O was very knowable in CLL has he had spent years at Mayo Clinic, but admittedly said he had poor bed side manner. H/O had already ordered Flow Cytometry, FISH and IGVH tests before first meeting with H/O. The IGVH results had not been received at appointment time, so I was told I had good 13q markers and was in 0-1 stage. I was given results from all my tests except IGVH test. My initial H/O was fill in retired doctor until H/O who was referred to me by my GP could set appointment with me. I consider my referred H/O very competent and still with me to this day. My greatest source of CLL information has been a CLL Specialist university professor, who I found as a result of advice of this forum. It was through this forum that I found out how aggressive my CLL actually was and most follow up information on treatments and etc.

[CycleWonder]

I was so shocked at my diagnosis in 2017 that I wasn’t ready for quite awhile to learn more about my “markers”. I still only vaguely know them because I don’t really want to learn that much about them. I am happy to stay in a state of blissful ignorance. My husband has studied the results of my BMB.

Sometimes surveys don’t dig deep enough to understand the reason people make seemingly irrational decisions.

[country76]

I had to visit a specialist to confirm I had Cll. My oncologist (hematologist) didn't know which cancer I had. I was denied having an IGVH test until years later just before treatment with Ibrutinib by my hematologist. I knew nothing about Cll and was distressed since it was my second cancer and asked my hematologist how much time did I have. He laughed at me and said, "I don't know".

Several years down the road I feel IGVH and Serology should have been done with the Flow Cytometry and FISH.

Since this is a cancer of the Immune system there should be a baseline done initially. I did not have a serology done until I had been in treatment for almost 3 years. There should be a focus on the immune system too.

Perhaps these numbers should be watched with the other blood tests as to the may be progression and when to start treatment.

I maybe wrong since I am not a doctor however as a patient I feel the whole mess is chaotic and needs to be more organized. We are on our own to find out we need a specialist and these website were invaluable to me. They say don't listen to the website?? Another example is the higher skin cancer risk. It was details like that were not given to me. I found out from other patients on the website.

Also the side effects. When I told my pharmacologist and doctor they said they had never heard of them, referring to the knee pain. Now when hundreds of patients on the website complaining of knee pain seem to be a common issue. When complaining about cramps, we are not talking about any simple little charlie horse that I had experienced my whole life since a child.

I should stop here. Didn't mean to go into a vent. lol I feel there is a whole other program to having Cll Hematologists are not admitting or aware of.

Perhaps I should be more organized and write a handout for them to give to their Cll patients. lol

Has Cll drivin me crazy ? 😜🧐🤪🤗

[CycleWonder in reply to country76]

I am glad you found this community and learned valuable information from others walking the same path. It has also been an immeasurable guide for me.

People often don’t understand another’s perspective, especially if the two are in different roles. I have witnessed this not only as a patient but also during my career and as a parent to a child with special needs. After attending one school conference when they repeated various statistics about how far behind my child was, I finally asked in exasperation if they could share anything he had learned in the last six months. The school officials attending the meeting were taken aback at my request - it had never occurred to them parents might find it distressing to learn how far behind their child was and conversely, how helpful it was for them to share what he was learning.

I see patient/doctor relationships in a similar way. To a CLL specialists who has treated hundreds of patients, each new development in our disease may not be relevant to them in terms of deciding when we need to be treated or if our treatment is going well. But the new development is new to us and this is often our first time going down the CLL path.

I should share with my doctor what is troubling me and I am trying to do a better job of communicating. He will take the time to answer my questions if I remember to ask.

[country76 in reply to CycleWonder]

I also have a child with special needs. It is a life time of worry.

[Grandmajoanie in reply to country76]

I read what you wrote and in particular about the knee pain,

Iam 78 and was diagnosed when I was 70. I’m still on watch and wait.

For the last two months I have been having knee pain. I thought It was just

my age, then I saw you mentioned people having knee pain and is it cll related?

So are many cll patients suffering from knee pain? Why would that be?

TIA

[country76 in reply to Grandmajoanie]

The knee pain was a side effect of Ibrutinib.

When I was in Watch and Wait I only had occasional sudden tiredness that only lasted a short time. It was strange, I suddenly became tired and would lay on the couch for 15 or 20 minutes and it was gone. It didn't happen very often. I learned it was part of Cll. I was diagnosed with a blood test during a routine physical.

I was very active and would have not known I had anything wrong with me until I became anemic, my spleen enlarged, elevated WBC 130, enlarged lymph glands in my neck and I caught Legionnaires Disease, which I almost died from.

That is what started my treatment. I currently am doing fine and back to a normal life except for the Covid monkey on my back.

Wishing you well and your knee pain to go away and you have many years of watch and wait.

[JM10 in reply to country76]

Sadly, many will not benefit from the wise words on here until acronyms are banished and medical terms are explained in the text. For example: 'Several years down the road I feel IGVH and Serology should have been done with the Flow Cytometry and FISH'. Yes, I know, it up to me to decipher those terms but there are too many acronyms on HU and I am too tired now and too old to go ferreting about for endless explanations.

[Unglorious in reply to country76]

I so appreciated reading your post. I think each oncologist should on a daily basis read what the CLL community patients are posting and the various side effects they are experiencing. They need to join health unlocked.

[Mtk1]

I spent 4 years not knowing anything about cll, apart from what I was originally told by GP and haematologist, which was, it is the best cancer to get and you might never need treatment, it was only when I started treatment a year ago and seen this forum health unlocked in the information pamphlet I received with my 1st dose of acalabrutinib and joined this group. All I can say if it wasn’t for this forum I would be still in the dark, it has given me no end of information, and also a great deal of support this last year. Thank you healthunlocked.

Dave.