As part of its World CML Day 2021 activities, Friends of Max created a simple survey whose main objective was to gauge disease awareness levels amongst CMLers and their caregivers. Google Form was chosen as the preferred mode of conducting the survey due to the wide familiarity, the ease of circulating the survey and the collecting of reliable data from the respondents.
To ensure maximum participation, Friends of Max circulated the survey using communication platforms such as WhatsApp where we are connected with approximately 1300 and an Email group where we are connected with another 700 members. We also circulated the survey on our Social Media platforms, namely Facebook, Twitter and LinkedIn. For ease of access, the survey was translated to Hindi and circulated in India and Nepal.
Responses were collected from 4th August to 9th September 2021, during which we received a total of 783 responses from 17 different countries. 85% of these respondents stated that they were CML Patients, whereas the rest stated that they were caregivers of CML patients.
The respondents generally showed excellent awareness in the following areas-
1. Basic concepts and acronyms related to CML (Q 1, 2, 3, 9)
2. Nature and cause of CML (Q 4, 16, 17)
3. Monitoring and treatment methods available (Q 10, 15, 18, 19)
4. First Generation TKI (Q 5)
5. Compliance and dietary restrictions (Q 12)
However, certain information gaps could also be observed in the following areas-
1. Second Generation TKI (Q 6)
2. Mutations related to CML (Q 8)
3. Drug Resistance (Q 20)
4. Stages of disease progression in CML (Q 11)
5. More technical questions about CML (Q 14)
Respondents were also found to have a tendency to avoid questions related to the following topics-
1. Second and Third Generation TKI (Q 6, 7)
2. Background of CML and its treatment (Q 14)
3. Drug Resistance (Q 20)
The expert panel presiding over the Analysis segment at the Virtual Gathering to discuss the survey made some pertinent observations. The panel comprised of physicians, patient leaders and the Max team. Some of their observations are listed below-
1. Dr Jude Vaz observed that different regions/languages may use different terminologies to refer to the same thing. Certain questions (like Q 2) may not have been understood by the non-English speaking population due to the language barrier and that could have an impact on the results of the survey.
2. Dr Dipanwita Maiti shared that most patients are familiar with brand names of drugs instead of their technical names, and suggested that if in certain questions (Q 5, 6, 7) the brand names “Glivec” instead of Imatinib, “Tasigna” instead of Nilotinib, and “Sprycel” instead of Dasatinib were used, it could improve the results for these questions.
3. Dr Raghu Krishnaswamy commented that the fact that most questions showed an accuracy of about 80% goes to prove the authenticity of the survey results.
4. Viji Venkatesh commented that in certain question (like Q 10), even though only 38% of the respondents have answered correctly, an additional 37% displayed knowledge of RT-PCR and could relate it to Bcr-Abl testing. The lack of awareness about FISH could be attributed to the fact that this method is no longer commonly used and thus the younger generation would be largely unaware of it
5. “Every answer is a correct answer” – Dr Pankaj Malhotra very aptly pointed out that just because there isn’t enough data to prove the correctness of something, does not mean that it is wrong. Cancer is a topic that has been researched on for decades and there are still a lot of areas where light needs to be shed.
The survey and the discussion at the Virtual Gathering has given us some deep insights into the information gaps that exist amongst CMLers and their caregivers-
1. Most of the questions in the survey were based on topics that have already been shared on Friends of Max’s social media pages. The low scores in these questions highlight the fact that this information is not being properly disseminated amongst the CML fraternity.
2. There is a need to focus on certain topics such as Second and Third Generation TKIs, CML mutations, relation between disease mutation and lack of compliance and drug resistance amongst CMLers.
3. There is also a need to remove certain misconceptions. For example, almost 10% of the respondents believe that CML is a hereditary disease (Q17). Similarly, 25% respondents believe that there are factors other than interchange of Chromosome 9 & 22 which can be responsible for CML (Q16). 17% respondents also displayed confusion between Grapes and Grapefruit (Q13)
Friends of Max is determined to take decisive steps to bridge the information gaps. A few steps that we plan to take in the near future towards achieving this are-
1. Encouraging patient leaders to stay updated and share relevant articles from FOM’s social media pages.
2. Ask physicians and experts at the patient support group meetings to address the topics where respondents showed lack of awareness/ existence of misconceptions
To read the complete report on FOM World CML Day 2021 Survey & Virtual Gathering, click here.