As the world’s largest support group for CML patients, Friends of Max, with the help of The Max Foundation’s South Asia team has started conducting surveys around World CML Day every year. The purpose of these exercises is to gain insights on the needs and challenges faced by the CML Community in India and elsewhere.
In the last two years, the world had to confront an unprecedented situation – The COVID-19 pandemic. To understand the impact of this pandemic – the challenges faced and the lessons learnt by the CML community in South Asia, The Max Foundation and Friends of Max conducted a survey titled – “Impact of COVID-19 on the CML Community in South Asia”.
More than 1000 respondents participated in this survey and gave us valuable insights into the management of this disease in these difficult times. In this report, we discuss the findings.
The goals of this survey were:
- To ensure that all stakeholders (patients, caregivers, physicians, FOM volunteers and The Max Foundation) stay connected and updated with the total management and challenges faced by the community
- To provide a platform to the patients to express their opinions and concerns
- To gain insights on the efficacy of interventions
- To identify gaps and new potential areas of intervention
A popular online platform was chosen as the preferred mode given its wide familiarity, ease of circulating the survey and collecting reliable data from respondents. This survey was then widely circulated over Instant Messaging Service, Email and Social Media. Besides English, the survey was translated into Hindi (for patients in North & Central India and Nepal), Kannada and Tamil. Other regions were happy to take the survey in English. Responses were collected between 1st August and 4th September 2022.
Some observations –
- Although 1039 responses seems like a big number, it accounts for a comparatively small percentage of the number of CML patients in the region.
- Despite translating the survey in Hindi, the response from Hindi-speaking states was only 12.7%.
- Similarly, the Tamil and Kannada translations for the survey attracted 2.5% and 0.9% of the total responses respectively.
It is apparent that the concept of a survey and willingness to participate in an exercise like this is still something unfamiliar to patients in the region.
A total of 45 questions were posed to the respondents of the survey. According to their nature, these questions were divided into 6 major sections:
- Patient profile / demographics
- COVID-19 and vaccination
- Impact on treatment
- Impact on nutrition
- Economic impact
- Psychosocial impact
- Efficacy of interventions by The Max Foundation and FOM volunteers
The complete set of questions can be accessed here – https://forms.gle/s1okoxfVpUxfxfaf6
Major Insights gained:
A] Profile of respondents
- Age Group – 74% of respondents were aged between 31-60 years, followed by over 60 (16%) and 18-30 years (10%). Only 3 respondents out of the total were aged below 18.
- Gender – The vast majority (71%) of respondents were male and 29% were female.
- The vast majority of respondents have been prescribed Imatinib for treatment of their disease.
- 49% of respondents are college graduates and above. 15% are educated up to the 12th grade and 22% up to the 10th grade. 14% have only completed junior school education.
B] COVID-19 and Vaccination
- 23% of respondents had tested positive for COVID-19. Of these, 15% had to be hospitalized.
- 94% of respondents said that they have been vaccinated against COVID-19, while 92% respondents have taken both doses.
- A direct correlation was found between the vaccination status of the patients and their level of education. 28% of those unvaccinated have only completed junior school and another 28% have completed their matriculation.
- 49% of respondents mentioned at least one apprehension against getting vaccinated, but no correlation was found here with the level of education.
- 80% of respondents received their vaccines at a government facility. An almost equal number of respondents said that they did not have to pay to get vaccinated.
- 10% of the respondents were frontline workers whereas another 17% fell under the category of essential services. 35% of respondents said that they never stepped out of their homes during the pandemic. Meanwhile 13% stated that they had to step out on a daily basis.
C] Treatment and Monitoring
- 55% of respondents faced at least some kind of disruption in their treatment. Disruption in consultation accounted for the highest percentage (18%), closely followed by disruption in collection of medicine supply (14%).
- 25.5% of respondents in need approached the Max team for support in collection of supply, while another 16% approached FOM City Chapter Leaders in their respective regions.
- Of those who underwent monitoring tests, the majority had to visit a clinic with no access to at-home sample collection.
- 35% of respondents did not undergo any monitoring tests during the pandemic. This percentage was found to not have any major influence from wage loss or fear of COVID-19 infection.
D] Economic Impact
- It is observed that daily wage earners comprise 25% of the pool of respondents. A big percentage of respondents are dependent on other family members with students comprising 4%, homemakers comprising 14% and another 22% being unemployed individuals.
- Of those employed, only 34% had the provision of working from home. 30% had to work out of their offices and another 36% were engaged in field work.
- 57% of respondents said that they experienced wage loss during the pandemic.
E] Psychosocial Impact
- More number of respondents were worried about their friends/family being infected by COVID-19 pandemic than they were about themselves.
- Similarly, the fear of death due to COVID-19 was low amongst the respondents who took the survey.
- 64% of respondents said that they were not very concerned about access to medicine supply, while a similar percentage said that they did not have concerns over consulting their treating physician.
- 37% of respondents claimed to have suffered from bouts of anxiety or depression during the pandemic. Of these, the majority (37%) said that they talked to their friends/family to deal with it, while 30% said that they did not do anything about it. No correlation was observed between patients experiencing bouts of anxiety/depression and age groups/ education levels.
I] Impact on Nutrition
- 61% of respondents said that they had access to nutritional foods during the pandemic while 22% said that they did not. 17% were unsure. However, 35% of the total number of respondents said that they experienced a decline in their nutritional intake. It is observed that 72% of these also experienced a loss of wages during the pandemic.
- Amongst those who experienced a negative impact on their nutrition, fruits and vegetables were most commonly missed followed by meat and eggs.
J] Interventions by The Max Foundation and FOM
- One-third of the respondents were unable to attend any online support group meetings by The Max Foundation and Friends of Max. The most commonly cited reasons were “Did not know how to attend a virtual meeting” followed by “No meeting was conducted in my region”.
- A few respondents cited lack of time, absence of information, network issues and other challenges.
The vast majority of respondents said that they found Max and FOM’s interventions during the pandemic as “extremely helpful”.
Moving forward, we believe that the following steps will help us improve our interventions to deliver maximum benefit to the CML community:
- Work with physicians and experts to address the major issues faced by the patients at the upcoming Support Group Meetings and other interventions.
- Encourage patient leaders and members of the community to actively participate in FOM events.
- Impart training to patients and caregivers on how to answer surveys and participate in online activities.
- Give thought to ways of increasing participation and making the surveys more response friendly.
- Impress upon the minds of the CML Community the importance of participating in these surveys, sharing their experiences and feedback, and their power to make a difference in our patient interventions and advocacy.