2012 Global Survey Results
In early 2012, the Lymphoma Coalition launched an on-line global survey to its 54 member organizations and their local members to help them gain a better understanding of and determine the accuracy of what they believe are the following growing concerns affecting lymphoma patients around the world:
a) A general lack of understanding and awareness of the signs and symptoms of an increasingly complex disease on the part of both patients and healthcare professionals that can typically result in late diagnosis ;
b) Misunderstanding about clinical trials as an effective option to treatment; and
c) A quality of life being experienced by lymphoma patients that requires improvement.
The comparison of survey results every 2 years is an important benchmarking tool that will allow us to identify important trends as they evolve over time, and to illustrate progress in these three key areas.
It would appear that although awareness of these cancers has increased, misdiagnosis remains the same around the world. It is critical to educate the Practitioners and General Oncologists about lymphoma to reduce this threat to patients.
Secondly, there is a place for patient support organizations to work alongside the healthcare community at the time of diagnosis to assist in clinical trial education and all aspects of journey support. A formal and delicate structured process is required for this to take place.
Thank you to all the patients who participated and shared their journey with us.
Through a better understanding of these issues and their ability to paint a picture of and share the results with its member organizations, friends and partners, healthcare professionals, government, and the public, the Coalition is better equipped to educate the lymphoma community and develop advocacy platforms for change thereby having a positive effect on the lives of lymphoma patients everywhere.
2010 Global Survey Results
The 2010 Lymphoma Survey was conducted over the month of July and August and received over 1700 responses from both patients and patient communities around the world. The purpose of the survey was to get a better idea of three main areas that the Lymphoma Coalition feel are a growing concern for lymphoma patients worldwide:
I. Clinical trials – often misunderstood by patients and their families, we looked to find out how many patients and patient communities knew what clinical trials were and how they found out about them. With 95% of patients knowing what a clinical trial was, and only 5% saying they would under no circumstances participate in one, we were pleasantly surprised with the results. However, 56% of patients said they needed more information before deciding whether to participate or not-- signalling that further education could help boost participation rates.
II. Diagnosis & patient awareness – a lack of understanding of this complex cancer has led to diagnosis issues. The survey showed us that 55% of patients received at least one misdiagnosis. We wanted to see how long it was taking lymphoma patients to be diagnosed accurately and if they were being given medication for these misdiagnoses. Furthermore, how were patients viewing the diagnosis experience -- did this differ from how their friends or family view it? Lastly, we wanted to find out how aware patients were of lymphoma prior to their diagnosis and how this influenced their diagnosis experience.
III. Young adults & compliance – lymphomas are on the rise in young adults in many countries around the world. We wanted to see what was going on with young adults during diagnosis, how aware they were of lymphoma prior to diagnosis, and their attitude towards clinical trials. Results, such as young adults not remaining as physically active as other age groups post-diagnosis, were especially concerning. We also wanted to see if young adults were getting enough social support to meet their needs, as this may play a vital role in their road to remission.
The 2010 Lymphoma Survey received over 1700 responses from individuals across the globe. 77% of responders were lymphoma patients, with the remainder of responses coming from involved members of lymphoma patient communities. Of the respondents that were patients, 70% were in remission or had been treatment free for over 5 years.
It should be noted that, while this survey was taken on a global scale, 72% of the responses were from North America, with Canada and the USA making up 16% and 56% of the results respectively. Other notable countries included Japan (7%), the UK (4%), France (4%), and New Zealand (4%).
The age of participants ranged from 10 to over 65, with the majority (57%) being in the 46-65 age bracket. Young adults, aged 18-29, made up only 5% of total responses, signalling that this age group personally chose not to complete the survey or are not well represented in lymphoma patient organizations.
On the gender side, it was close to a 60/40 split females to males. Out of the 12 main lymphoma types, Follicular lymphoma had highest representation at 35%, in line with the global statistic of 40%[i]. The next highest was Hodgkin’s at 12% and Mantle Cell at 10%. Over half of all patients suffered from painless swelling in the neck, armpit or groin as initial symptoms. Night sweats and fatigue were also very common symptoms, getting responses in over one-third of all patients. Of patients that underwent stem cell transplant treatment, 47% were Mantle Cell patients and 10% were Hodgkin patients. The majority of stem cell transplant patients were between the ages of 46-65 (71%).
At the Young Adult level, Hodgkin lymphomas represented 66%, with DLBCL taking the second largest chunk with 16%. Symptoms in young adults were similar to the rest of the age groups but persistent itching was found to be more common (12% in young adults as opposed to 7% in total) 67% of responders said their initial therapy was via intravenous. 15% of responses used “Watch and Wait” as their initial therapy. “Watch and Wait” was found most common in CLL/SLL patients, where it was used 50% of the time. Follicular patients reported using this therapy type 20% of the time.
The survey found that a surprising 95% of patients knew what a clinical trial was but only 28% had ever been approached to participate in one. While 40% of responders say they would absolutely participate in a clinical trial, only 4% would say no to a clinical trial; the remaining 56% needed more information before they could decide.
This gap is even bigger in young adults where only 85% knew what a clinical trial was and 75% needed more information before considering the treatment path. However, we are seeing the same pattern in every age bracket—patients have an idea of what clinical trials are, but most want to learn more before participating.
Of those approached with clinical trials as an option to treatment, 79% were approached by their doctors. Other than doctors, patients are finding information about clinical trials through personal research (9%), and only 4% were approached by their patient organization.
The top four reasons for not participating in a clinical trial were:
I. that they wanted a treatment that was already tested and had a good history of success (29%)
II. did not have enough information to make their decision (18%)
III. the clinic or hospital was too far away from the amount of visits that was required (9%)
IV. 30% said other with no explanation.
Diagnosis & Awareness
55% were misdiagnosed prior to discovering lymphoma. Common misdiagnoses included cold or flu, various infections or viruses, and general stress or overwork. 34% of these misdiagnoses were accompanied with medication. Young adults, in particular, were given medication for their initial diagnosis 58% of the time.
The following chart shows how young adults are receiving accurate diagnoses later than other demographics.
56% of responders went to the doctor with recognizable signs and 29% were “just not feeling well”. 15% found they had lymphoma through a physical examination—only 4% of young adults found the disease this way. Young adults went to the doctor with recognizable signs at a comparable rate as other demographics, however more (39%) were “just not feeling well”.
Though most people had heard of lymphoma prior to diagnosis, they knew very little about the disease and almost never connected their symptoms to it.
While 56% of patients went to the doctor with recognizable signs, only about 1 in 5 (19%) of these patients suspected it would be lymphoma. This demonstrates how little lymphoma is on the radar for doctors and the general population.
Furthermore, when asked to rate their knowledge of lymphoma on a scale of 1(know very little) to 5, 69% of patients rated their knowledge a “1”. The lack of awareness is especially concerning when looking at young adults, where only 43% had heard of lymphoma prior to diagnosis compared to 64% of the whole survey.
When comparing knowledge of lymphoma prior to diagnosis to their diagnosis experience, we found that knowing more about the cancer prior to diagnosis didn’t make people any more or less satisfied with their diagnosis experience. Of those who said they knew a lot about lymphoma prior to being diagnosed (rating their knowledge 4/5 or 5/5), they rated their diagnosis experience very similarly to those who knew little about it. Those who rated their diagnosis experience 1/5 tended to have more misdiagnoses and a longer total diagnosis time (see charts below).
We also found that on average, the patient’s community viewed the diagnosis experience negatively compared to how the actual patient viewed it.
There was an interesting relationship between diagnosis experience and type of doctor. Patients who went to a general oncologist or lymphoma specialist had a quick diagnosis and were much more satisfied with their diagnosis experience. Lymphoma specialists in particular were only used by people 46+.
Whether or not the patient got a second opinion was split 50/50. Young adults got less second opinions than other demographics (42% young adults vs. 51% entire survey), but when asked if they or their community wanted a second opinion they responded “yes” more than other demographic (59% young adults vs. 50% entire survey).
Compliance & Young Adults
It is difficult to get a real understanding of what’s going on with patient compliance especially in young adults. It may be possible that those patients who might take the time to answer this survey may also be very compliant as well. For example, when asked if the patient followed his/her treatment path and if they attended all follow up appointments, 90+% said they complied to the fullest, answering “All the time”. Also, considering that 70% of responders were in remission, perhaps this helps illustrate that compliance is an important part in patient recovery. There was, however, a negative trend in young adults remaining physically active as illustrated in the chart below.
Looking specifically at patients that used oral medication as their initial therapy, 14% followed their treatment path “often” (as opposed to “all the time”) which is double that of the rest of the responders at 7%. What patients consider “often” is inconclusive but may or may not be affecting the success of this treatment path.
Of those who did not comply fully and personally chose to stop or alter their treatment path, finances (33%), feeling too sick (17%), feeling better (17%), and limited access to a treatment centre (14%) were the top reasons.
Ongoing social support is important for young adults.. Results show that meeting other people with lymphoma online is important to young adults, but surprisingly, meeting face-to-face was ranked as more important. At the same time, young adults are interested in online education material. Topics they are interested in are long-term effects of treatment and what the next step is in remission. This is fitting considering three-quarters surveyed were in remission.
I. This survey determined that patients and their support community are open to understanding more about clinical trials. There is a role for us to assist in this process.
II. Facts are not available to prove our assumption that lymphoma incidence is rising in Young Adults and mortality is an issue in this age group around the world not just UK and NA but anecdotally we are hearing from patient groups from around the world that it is. This age group surprised us with their interest in more science education and they are also in need of support and guidance in moving on with their life once they are in remission. We will review this age group in more detail to determine the role we have with them and how to gather the necessary research.
III. Diagnosis is an issue in most patient cases as is evident in the results of this survey. It is important for LC to work to develop an educational program for General Practitioners and Oncologists to alleviate this problem.