Results Of An On-Line Patient Survey From The Asian CML Group

In order to evaluate the different healthcare responses and needs of patients in developing and developed countries, a survey was carried out from the Asian CML Support Group and summarized in Table 2. The developed nations comprised patients from the US and Europe while the developing nations comprised patients from Asia. Nine patients from the developed countries and nine from the developing countries were included in the survey.

Table 2. Survey Results

In several areas, there were clear agreements in the responses between patients in the two groups. Both groups voted overwhelmingly (100%) that being a part of the on-line support groups had increased their mental well being. A relatively high percentage in both groups (>30%) viewed the support group as a lifeline. This is a striking observation, particularly from the Asian perspective. Asian cultural tendencies may be expected to vote more towards support from family and friends. In both groups, a significant percentage (>60%) said that the on-line groups had influenced their treatment decisions. This illustrates the rise of the informed patient model in deciding treatment in cancer therapy.

Interestingly, the areas where different responses were observed were in patient education level and location in rural areas or cities. In the developing country group, 88.9% were college educated and above, as opposed to only 44.4% in the other group. This may be indicative that the access to computers and the Internet in developing countries is limited largely to the middle-class and the wealthy, which may be expected to incorporate relatively higher education levels. While 100% of all developing country patients were in the big cities, a smaller percentage of 77.8% was found for patients from the developed countries. This may again reflect the expected trend of greater access to computers and the Internet for the rural areas of the developed countries.

Taken as a whole, the breakdown of the group posting by topic is shown in Figure 1 for a sampling of 459 messages. Information on disease and treatment together with emotional support make up the bulk of the messages, with about an equal contribution from each. A much smaller component of the messages include drug access and insurance issues.

Types Of Emotional Support Discussions In The Group

Typically, the diagnosis of CML, its subsequent treatment, and the realization of mortality result in profound changes in the emotional well being of the patients and their caregivers. The support group is a very relevant forum for the patient and caregiver to seek out emotional support. The types of emotional support messages are very varied, but some of the more pertinent ones include:

a. Sharing the emotions and feelings of the day that one was diagnosed, often a traumatic and unforgettable part of the patient’s life.

b. The worries of living life with CML.

c. The difficulty family members often have in relating to having a CML patient in the family.

d. Messages of congratulations for a member reaching remission and commiseration for a member losing remission.

Sharing and exchanging their feelings and opinions on these topics help the list members deal with the difficult emotional aspects of having cancer.

A further aspect of emotional support involves community support in a physical sense, moving from on-line to direct contact as illustrated by the following examples. A patient from Australia who suffered from severe side-effects of Imatinib was apprehensive of going for a holiday in the US, owing to possible difficulties in obtaining treatment should it be needed while on holiday. Listmembers living in the area the patient planned to visit, gave their phone numbers and that of their oncologists to assure the patient that medical help would be on-hand if needed. The patient was reassured and went on the holiday without mishap. A second example is that of a patient in Singapore who was unable to have a particular diagnostic test carried out, the test being unavailable in Singapore. Two listmembers, not only identified the institution in the US where it could be done, but arranged with the institution to have it done for the patient when the patient went to the US on business.

Disease And Treatment Discussions

Besides emotional support, information on disease and treatment is the other main message topic on the list. Typically this comprises:

a. Messages sharing the types of tests and frequency of monitoring of individual patients.

b. Shared experience on side effects.

c. Updates by members taking part in clinical trials (these are for members for whom Imatinib treatment has not proved successful)

d. Presentations of research abstracts on CML from the leading leukemia journals, meetings and conferences.

The large amount of information sharing on disease and treatment protocols on the list is a vital aspect of obtaining proper treatment, particularly for patients in developing countries, and this will be elaborated further in the following discussion.

When considering the treatment problems faced by newly diagnosed CML patients in cities in the developing nations (with particular reference to India), the following factors are highly relevant:

a. Selection of the correct treatment.

b. Correct treatment with Imatinib (right dose and dose escalation)

c. Correct monitoring of the disease.

d. Correct treatment of side effects.

Typically, the problems encountered by patients are the following:

a. Oncologists are unaware that Imatinib is the treatment of choice and persist in treating the patient with the older but much less effective drug interferon. This can sometimes be a result of the high cost of Imatinib that makes it unaffordable for most patients.

b. Oncologists are unaware of the correct dosages of Imatinib.

c. Oncologists are unaware of the recommended disease monitoring tests and their frequencies.

d. Poor treatment of side effects.

e. The high cost of Imatinib.

Information Flow From The Top CML Treatment Centers

As CML is a life-threatening disease, improper treatment can have serious health consequences for the patients. The on-line support group offers 24 hours a day, 7 days a week access to information from patients around the world. As a number of patients from the group attend the top treatment centers in the US, these patients provide a means to transfer the protocols and practices they are treated with to patients from the developing nations who post questions on these topics on the list. These patients can then discuss with their oncologists what is being done at the top treatment centers, and arrive at more informed treatment strategies. 

A second way of transmitting information from the top world CML experts is to discuss the latest medical journal articles written by CML experts, outlining CML current research and protocols in the group. The group has a few scientists and doctors who use their background to present the articles in an easy-to-understand layman manner to the other members.

To illustrate this information flow in action, here is an example from the support list.

A patient in India was being treated with a lower dose of Imatinib owing to side effects. However, the top centers would persist with a higher dose in this case, as this patient is deemed high-risk, and in high-risk patients more aggressive treatment is deemed necessary. With this information, the patient is in discussion with the oncologist on a possible dose increase.

In order for this model of information flow to work optimally, the tendency of Asians to view doctors as having all encompassing knowledge about a disease and its treatment has to be overcome. Particularly in cases of cancer, of which there are numerous types, and where treatments are frequently changing, oncologists may not be up to date on the latest treatment for a rare disease. In this case, informed patients, ably supported by the on-line groups, work together with the doctors to arrive at the best treatment solution for the patient.

A Model For Village Telemedicine

A particular difficulty encountered in villages and rural areas is that CML experts or oncologists familiar with this rare disease are unlikely to be accessible to patients, and treatment is likely to be administered by a general oncologist, who may not be familiar with the latest treatment. A good model for this is from the rural and remote areas of the US, where even a general oncologist may not be available for 250 miles of one’s home. The following is an example of a rural patient in the US benefiting from the on-line support group. It is likely that village telemedicine centers in developing nations could benefit along the same lines.

A patient from a rural area in the US was being given sub-therapeutic doses of Imatinib by his oncologist, and not reaching remission. After being shown a published paper on proper disease management written by a top CML expert by the patient (who in turn received it from the support group) the doctor changed the dose to the therapeutic dose. The patient has since reached remission on the therapeutic dose.

We hope that more CML patients from developing countries join our support group and as they get information and relay it to their doctors, the doctors who are grossly overworked with little time to access the CML literature, may benefit from CML articles being passed to them by their patients who receive these from the group. These city doctors can therefore learn the newest treatment protocols and can in turn pass the knowledge to their village counterparts through telemedicine. New cancer drugs are first discovered and experimented in clinical trials in developed nations and it is natural that the oncology experts conducting these trials will first discover the benefits and pitfalls of a new cancer drug. It is vital in a life-threatening disease like cancer, for this information to reach oncologists worldwide as fast as possible. On-line patient cancer support groups can provide a good conduit for this purpose. The accuracy of the information can always be checked with a quick e-mail between oncologists.

Drug Access Issues Discussions In The Group

A principal difficulty encountered by CML patients in developing countries is being able to afford Imatinib. The discussion list has been instrumental in pointing out the existence of GIPAP to members and how to apply for it. It has also provided a forum to air the concerns of patients over the administration of GIPAP. A patient from China reported to our group that he had paid out-of-pocket for Imatinib for one year and was financially crippled. China, then, did not have GIPAP in place and with the help of listmember advocates from the group, the Chinese patient applied to the drug manufacturer and was successful in obtaining a free supply of Imatinib on compassionate grounds.

Summary And Drawbacks

This paper has highlighted a case study of the Asian CML Support Group in providing disease treatment information and emotional support to its members. It illustrates with a survey and examples from the on-line support group how the treatment and mental well being of patients, particularly those in the developing countries has been positively impacted. It is envisioned as more Internet connections occur in developing countries, more patients will benefit from the on-line support groups.

The major drawbacks of the support group are the low percentage that make up Asian members, the barrier of language, lack of computer access in areas other than the big Asian cities, the inability to penetrate rural areas in developing countries, cultural barriers which prevent Asian patients from being advocates of their disease treatment and the poverty level in many Asian countries that prevent first-line disease treatments from being implemented due to the high cost of cancer drugs. E-health applications are unable to reach the majority of developing countries [35] and it is naïve to assume that the barriers of poverty, limited medical care, lack of access to education and computers can be overcome in the short term. For CML patients to benefit to the same degree in Asian nations as in the Western world, economic and political concerns must be addressed at the government levels.

However, on-line health support groups can still reach a subset of patients in the developing world and impact their healthcare positively as shown in this paper. In turn, through the help of medical professionals and transmission of information and expertise via telemedicine, more patients in developing countries can be potentially helped, including the rural areas. Audio conferencing among patients is already being used by breast cancer women in rural areas of Canada [36] as a means of support. The Yahoo on-line groups have a “Chat” feature that enable voice contact over the Internet and transcends the barriers of language and dialects. Currently, we use this feature on the Asian CML Support Group with Asian patients and caregivers who are ill versed in the English language.

To reach a wider audience in developing countries remains a challenge but we expect to do that with time and the help of cheap generic cancer drugs which allow more cancer patients in developing countries access to life-extending treatment. The emergence of informed patients in developing countries can only add to improvements in healthcare and drug access as seen in the developed nations.[37,38] In the area of CML, on-line support groups in developed nations have powerfully impacted healthcare in influencing the development of Imatinib and effecting policy change in a nation’s healthcare system [E-Health Applications: A Look At Online Discussion Lists on Chronic Myelogenous Leukemia by J.D. Ramos, A. Rai-Chaudhuri and R.W. Neill, submitted to British Medical Journal] and it is to be hoped that our group can also make important contributions to the healthcare of CML patients in developing countries.

Acknowledgments:

Dr. Anjana Rai-Chaudhuri would like to thank Joana Ramos, cancer advocate, for guidance in patient advocacy and useful references. She would also like to thank Robert W. Neill, Jr. of the CML International Support Group on Yahoo for support and discussion in his list at the very traumatic time of her husband’s diagnosis. This served to later inspire her to form the Asian CML Support Group on Yahoo. She would also like to extend her heartfelt thanks to CML survivor and her friend, Dr. Eva Marie Ratilla of the Philippines, who helped her in the initial stages to form the Asian CML Support Group. 

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