B. Misunderstanding about clinical trials as an effective option to treatment; and

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3 ANALYSIS I. INTRODUCTION 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.

4 ANALYSIS I. INTRODUCTION - Continued 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. This report identifies specific results for the Australian lymphoma population. With this information, patient organizations in Australia can be better equipped to serve the needs of the local community.* * NOTE: Readers should be cautious in making comparisons between 2010 and 2012 results results are included in this report only to show the difference in demographics between 2010 and 2012 surveys and should not be interpreted to indicate any improvement or decline in what patients have experienced between those 2 years. The reason for this is the following: Approximately 78% of respondents in 2012 were diagnosed prior to 2010, and as such their responses reflect their experiences as they were over 2 years ago, and therefore do not indicate any improvement or deterioration in experience over the last 2 years. We were however for the Patient understanding and awareness at diagnosis about lymphoma question able to compare the awareness of patients diagnosed prior to 2010 (from both the 2010 and 2012 surveys) to patient awareness for those diagnosed after The results of that analysis are included in this report. Due to time and funding constraints this analysis was not performed for other questions on the survey. However in 2014 we plan to extend this type of analysis to provide improvement/decline analysis for all of the areas surveyed.

5 ANALYSIS II. SURVEY RESULTS Demographics Total response rate: A total of 1606 individuals answered this year s Global Patient Survey, including respondents from 51 countries around the world. Respondent Demographic Profile: Australia had the fourth highest survey participation rate, with 103 responses or 6% of the total. 72% of all Australian respondents were patients. Of those, 40% were females. Survey respondents had the following age profile: o (0%), o (5%), o (15%), o (57%), and o 65+ (23%).

6 ANALYSIS II. SURVEY RESULTS Demographics Continued Respondents to the survey had the following types of lymphoma: o Follicular (24%) o T-Cell (15%), o Hodgkin (21%), o DLBCL (2% versus 11% globally), o Waldenstrom s (4%), o Other indolent NHL (9%), o Other Aggressive NHL (8%), o CLL/SLL (2%), o MALT/Marginal Zone (0%), o Burkitts (3%), and o Mantle Cell (3%).

7 ANALYSIS II. SURVEY RESULTS Demographics Continued Hodgkin accounted for the largest proportion of lymphomas for year olds (60%), and 53% in the age group. The disease accounted for only 12% of all lymphomas in the age category, and 17% for 65+ year olds. Respondents to the survey were in the following stages of their patient journey: o 56% were in remission (versus 48% globally), o 16% were in the diagnosis stage (versus 22% globally), o 14% had relapsed, and o 15% were treatment free. 74% of patients were either satisfied or very satisfied with the diagnosis experience they had in relation to the medical care they received (versus 66% globally and 25% of patients in 2010).

8 ANALYSIS A. AWARENESS The Lymphoma Coalition and its members in Australia have an opportunity to continue to play an instrumental role in raising awareness about lymphomas with World Lymphoma Awareness Day to the general public, but also to play a more active role in the education of patients and the healthcare community so that more lives can be saved. Although awareness about lymphomas amongst the general public in Australia is poor, there are encouraging signs that awareness and understanding about lymphoma has improved since 2010, and that more Australian patients than global ones are visiting their doctors for signs and symptoms earlier on. Understanding and awareness about lymphomas is also low within the healthcare community as shown by the rate of misdiagnosis, improper medication prescription, and the time taken for an accurate diagnosis.

9 ANALYSIS Survey Findings - Patient Awareness In 2012, awareness about lymphoma amongst patients in Australia prior to their initial diagnosis for patients who at least understood it was some type of cancer of the lymphatic system, and who had been diagnosed within the last 2 years was 34%. By comparing respondents in the 2012 survey for who had been diagnosed within the last 2 years (47%) to those who had been diagnosed more than 2 years ago (32%), there appears to have been significant increase in this awareness and understanding. Of the 6 countries with a large enough sample size to compare results, this increase in awareness of 15% (along with that of France) was the largest indicating that any recent awareness initiatives have been successful. The 4 most prevalent symptoms patients exhibited prior to their diagnosis were: fatigue (21%), painless swollen gland/lump (19%), night sweats (16%), and weight loss (10%). Despite these symptoms, 47% were still prompted to visit their doctor either for their yearly physical (9% versus 17% globally and 0% of respondents in 2010), or because they were just not feeling well (38%).

10 ANALYSIS Survey Findings - Patient Awareness Continued In 2012, 46% visited their doctor because of their signs and symptoms (versus 56% of respondents in 2010). 69% of patients visited their doctors within less than 6 months of first experiencing symptoms (versus 57% globally), but 23% took between 6 months and 2 years and 5%, more than 2 years. Only 29% of all respondents were prompted to get a second opinion (versus 46% globally). Only 30% did so (versus 49% globally and 69% of respondents in 2010). Only 15% of patients said that lymphoma was suspected prior to their initial diagnosis and that 60% of those discussed this suspicion with their doctor.

11 ANALYSIS Healthcare Professional Awareness Only 17% of all respondents were correctly diagnosed with lymphoma for their initial symptoms. 23% (versus 44% of respondents in 2010) of all respondents were accurately diagnosed for their initial symptoms within the first 2 weeks, another 53% (versus 32% of respondents in 2010) by the 4 month mark, and the remaining 24% after that. The doctor s diagnosis for initial symptoms for 47% of patients included a cold/viral infection (16%), glandular issue (16%), or no diagnosis at all (15%). Medication was prescribed to 34% of those misdiagnosed. At the time of initial diagnosis 57% saw a general practitioner (versus 81% of respondents in 2010), while 17% saw a haematologist (14% versus no respondents in 2010) or lymphoma specialist (3% versus no respondents in 2010).

12 ANALYSIS Healthcare Professional Awareness Continued 38% of the 17% of patients who were seen by either a haematologist or lymphoma specialist for their initial diagnosis were correctly diagnosed. 12% of those who were seen by a general practitioner also received a correct diagnosis. Only 13% of those years of age received an accurate diagnosis after initial symptoms. This compares to 65+ year olds where as many as 28% received the proper initial diagnosis after initial symptoms. Of those misdiagnosed, the age bracket that was most highly treated was year olds, where 41% of them were prescribed some sort of medication.

13 ANALYSIS Healthcare Professional Awareness Continued The most common misdiagnoses for year olds and for year olds was a cold/virus infection (average of 20%), whereas year olds and 65+ year olds most commonly were not given any diagnosis (average of 23%). In 2012, 67% of respondents had either nodal removal (33%) or a needle biopsy (34%) as the test for their initial diagnosis, while 32% had either a bone marrow biopsy (21%) or a blood test 11%). Of those who had a bone marrow biopsy 50% had to have more than one. Of those who had a needle biopsy, only 13% were diagnosed with lymphoma after initial symptoms compared to 15% for nodal removal, 19% for bone marrow and 27% for blood tests.

14 ANALYSIS B. CLINICAL TRIALS The Lymphoma Coalition and its member in Australia have a significant opportunity to create global awareness and understanding amongst patients and their support network through education and information dissemination to ensure that all patients have equal access to this option to treatment. There appears to be a disconnect between those who would be willing to participate in a clinical trial, and those who actually do so. An evaluation of the role of patient organizations in getting involved earlier in the patient s journey is therefore required. There is also a need for a more patient friendly process to ensure that lymphoma patients are approached in a way in which they are made to feel comfortable enough to participate in clinical trials. Awareness and understanding about clinical trials in Australia, and the degree to which patients are being approached to participate in them despite their willingness to do so is poor, and represents a missed opportunity. Not only are patients not being approached for their participation, but they also lack the proper information so as to be made to feel comfortable about making the right decision. Patients in various stages of the disease are not being approached equally and so do not have equal opportunity to take advantage of a treatment option that could save their lives. The majority of those approaching patients for their participation have been healthcare professionals.

15 ANALYSIS Survey Findings At the time of diagnosis, 60% of respondents understood what a clinical trial (versus 94% of respondents in 2010). Only 14% (versus 25% globally) of all respondents were approached to participate in a clinical trial despite the fact that of those, 100% (versus 69% globally) agreed to participate. Of those respondents who had not been approached, 40% said they would do so, and 56% were at least willing to learn more about them and needed more information before making a decision. Of those who did not want to participate, the 2 main reasons included: not enough information (34% versus 22% globally), and not trusting that the treatment would be successful (18%). Of all patients approached to participate in a clinical trial, 85% (versus 72% globally) were approached by a healthcare professional.

16 ANALYSIS Survey Findings Continued The second largest source of information about clinical trials was patient organizations (11%). None of those who were in the diagnosis stage at the time of the survey had previously been approached to participate in a clinical trial (versus 20% globally). Of those in remission at the time of the survey, 15% (versus 23% globally) had been approached, 20% who were treatment free had been approached (versus 32% globally), and 25% of those who had relapsed had been approached (versus 35% globally).

17 ANALYSIS C. Quality of Life Despite the increasing need for information and support for how patients might enhance the quality of their lives as they live longer with a more chronic disease, there are significant gaps in the delivery of these resources which pose important opportunities for the healthcare profession, treatment centers and patient support organizations alike. The physical effects of lymphoma have the greatest negative impact on patients quality of life, although emotional impacts and barriers to treatment are also key factors. Quality of life is poorest for the young, female and those receiving hospital treatment therapies. There are significant gaps in what the healthcare profession, treatment centers and patient support organizations are able to do in terms of making patients aware of and delivering the support resources available to help them improve their quality of life. In this respect, patient organizations in Australia are essentially an untapped resource for newly diagnosed patients.

18 ANALYSIS Survey Findings Physical & Emotional Impacts Since diagnosis, lymphoma patients in Australia have had a worse quality of life from a physical impact point of view than have had global patients specifically for: o Fatigue (69% versus 52% globally), o Trouble concentrating (42% versus 27% globally), o Weight loss (24% versus 15% globally), o Memory loss (22% versus 13% globally), and Patients in Australia have been less affected by the swelling of their arms and legs (3% versus 11% globally).

19 ANALYSIS Survey Findings Physical & Emotional Impacts Continued Patients in Australia have also been affected by: o Muscle weakness (40%), o Hair loss (35%), o Sleeplessness (34%), o Changes in taste and smell (32%), o Bowel changes (28%), o Problems fighting infections (28%), o Changes in sexual function (26%), o Aching joints (22%), o Mucositis/mouth ulcers (21%), o Skin reactions (20%), o Nausea & vomiting (20%), o Loss of appetite (21%), o Weight gain (13%), o Loss of fertility (12%), o Fluid retention (8%), and o Swelling of arms and legs (3%).

20 ANALYSIS Survey Findings Physical & Emotional Impacts Continued Females in Australia were affected significantly more than males for the following physical impacts including: o Hair loss (+20%), o Weight loss (+16%), o Fatigue (+15%), o Skin reactions (+10%), o Sleeplessness (+9%), o Aching joints (+9%), and o Loss of appetite (+8%). Males were more significantly impacted than females for: o Weight gain (+14%), o Muscle weakness (+12%), and o Mucositis/mouth ulcers (+10%).

21 ANALYSIS Survey Findings Physical & Emotional Impacts Continued Half of patients were affected most by concerns with changes in relationships with others (20%), concerns with changes in body image (14%) and financial stresses (14%), and impact on employment (16%) followed by: o Loss of self-esteem (11%), o Problems with insurance coverage (10%), o Difficulties with job/school (7%), o Difficulty using the health system (5%), and o Not understanding the options (3%). Young people (18-29 yrs.) struggled much more significantly than other age groups with the physical impacts of lymphomas. The 2 most significant impacts on this age group included changes in taste and smell and loss of appetite (80% of this age group were affected a lot), and mucositis/mouth ulcers (60% were affected). As far as emotional impacts were concerned, changes in relationships, concerns with body image and job/school had the most impact on this age group.

22 ANALYSIS Survey Findings Physical & Emotional Impacts Continued Only 33% of all patients said they had communicated any of these issues regarding the effects of lymphoma on the quality of their lives with their doctors, and of those, 63% said their doctors had been able to help them, while 25% said they had not. 50% of respondents sought support beyond their doctor. The proportion of patients affected by various barriers to treatment included: financial (14%), access to a treatment center (13%), personal support (8%), access to up to date treatment (5%), wait time to treatment (5%) and being unable to give up their caregiver role (4%). Financial issues were the most significant barriers to treatment affecting on average, 19% of year olds and year olds, while 25% of year olds were affected most by being unable to give up their caregiver role, and 16% of the 65+ age group were most affected with having access to up to date treatments.

23 ANALYSIS Survey Findings Treatment Center Support 53% of patients were provided with information about their treatment center by healthcare professionals, making them the most effective. The second most important source of information was the patient organization (20%) followed by: o Friends, family members, and other sources (20%), and o Online research (9%). 71% of respondents said their treatment center was most effective at offering them a counsellor/ psychologist (16%), a referral to an external support provider (20%), a social worker (18%), and/or a dietician/nutritionist (17%). 6% said that no services had been offered to them, and an average of about only 5% of respondents indicated that treatment centers had been effective at offering services such as physical therapy, pain management, a complementary therapist and a chaplain.

24 ANALYSIS Survey Findings Patient Support Organizations 57% (versus 45% globally) of respondents said their pa:ent support organiza:on was either very helpful or helpful at providing them with informa:on and support, while as many as 31% (versus 43% globally) said they did not use one. Pa:ent Support Organiza:ons could most improve their support to pa:ents by providing: o General informa:on, but informa:on also about their type of lymphoma and/or clinical trials, and to answer medical ques:ons (40%); o Personal support such as someone to visit them at home, in treatment, and/or a support organiza:on (24%); o Online support such as presenta:ons, an improved web site, and/or a support organiza:on (12%); o Telephone support such as someone personally answering the phone, and/or a 24 hour support line (6%); and o Financial support (6%).

25 ANALYSIS Survey Findings Home versus Hospital In 2012, 81% (versus 71% globally) of patients were using hospital based therapies including: o Intravenous (53% versus 43% globally and 71% of respondents in 2010) o Intravenous & oral (22% versus 0% of respondents in 2010) o Radiation (6%), o Subcutaneous (0%) and o Stem cell transplant (0%). While 20% were using home based therapies including: o Watch & Wait (14%), o Topical (4%), and o Oral medication (2%).

26 ANALYSIS Survey Findings Home versus Hospital Continued Patients receiving hospital based treatments have a worse quality of life than those of home based patients in that they are significantly more affected by the following physical impacts: o Hair loss (+29%), o Problems fighting infections (+18%), o Weight gain (+16% versus 8% globally) o Changes in taste and smell (+15% versus 23% globally), o Bowel changes (+13%), o Loss of appetite (+11%), o Loss of fertility (+11%), and o Swelling of arms and legs (+11%). These results are not surprising given that hospital treated patients typically receive harsher treatments than home treated patients.

27 ANALYSIS Survey Findings Home versus Hospital Continued Home treated patients were significantly more affected than were hospital treated patients for: o Skin reactions (+18% versus 10% globally), o Trouble concentrating (+11%), and o Weight loss (+10%) As many as 30% of those treated at home were not offered any treatment centre services versus 19% for those treated in hospital. 35% of those treated at home (versus 48% globally) did not use a patient support organization versus 43% of those treated in hospital.

28 ANALYSIS III. CONCLUSION It would appear that awareness of these cancers is still relatively low among patients and healthcare professionals despite the fact that there was a significant increase in awareness and understanding among patients. It is critical to educate about lymphoma to reduce this threat to patients. Despite this, it is good to see that Australian patients are visiting their doctors for signs and symptoms earlier on. Secondly, there is a place for patient support organizations to work alongside the healthcare community at the time of diagnosis to assist in 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. The following slides provide you with the details of the results. This report was produced in conjunction with Perception Insight, a firm with over 20 years experience in large scale global market research, survey production and analysis.

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30 DEMOGRAPHICS: Who Responded Are you CURRENTLY a lymphoma patient? Female Male Yes 72% (40%/32%) No 28% (17%/11%) Q1: Are you CURRENTLY a lymphoma patient? Base : Australia 2012 (103)

31 DEMOGRAPHICS: Who Responded Are you CURRENTLY a lymphoma patient? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 72% (2%,1%,21%,11%,11%) No 28% (0%,1%,3%,11%,4%) Q1: Are you CURRENTLY a lymphoma patient? Base : Australia 2012 (103)

32 DEMOGRAPHICS: Who Responded Are you CURRENTLY a lymphoma patient? Yes No 24% 28% 72% 77% Q1: Are you CURRENTLY a lymphoma patient? Base : Australia 2012 (103)

33 DEMOGRAPHICS: Age of Respondents Response Rates Total Female Male No. of Respondents Portion of Responses 100% 57% 43% 0% 5% 15% 57% 23% Q3: What is your age? Base : Australia 2012 (103)

34 DEMOGRAPHICS: Age of Respondents What is your age? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other % (0%,0%,0%,3%,1%) % (0%,0%,1%,8%,2%) % (2%,2%,17%,7%,11%) % (0%,0%,6%,4%,1%) Q3: What is your age? Base : Australia 2012 (103)

35 DEMOGRAPHICS: Stage of Patient Journey What stage are you at in your patient journey? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Newly diagnosed 11% (1%,1%,0%,2%,4%) Diagnosed & yet to be treated 5% (1%,0%,1%,1%,1%) In remission > 6 months 33% (0%,0%,12%,11%,1%) In remission > 2 years 23% (0%,1%,4%,2%,2%) Treatment free > 5 years 15% (0%,0%,2%,4%,4%) Have relapsed 6% (0%,0%,4%,1%,0%) Relapsed and in treatment 8% (0%,0%,2%,1%,3%) Q5: What stage are you at in your patient journey? Base : Australia 2012 (103)

36 DEMOGRAPHICS: Stage of Patient Journey What stage are you at in your patient journey? Newly diagnosed Diagnosed & yet to be treated In remission > 6 months In remission > 2 years Treatment free > 5 years Have relapsed Relapsed and in treatment 0% 0% 0% 5% 6% 8% 11% 12% 12% 15% 23% 29% 33% 47% Q5: What stage are you at in your patient journey? Base : Australia 2012 (103)

37 DEMOGRAPHICS: Lymphoma Subtype What type of lymphoma do you have? Burkitts 3% (0%,1%,0%,1%,1%) CLL/SLL 2% (0%,0%,0%,2%,0%) DLBCL 2% (0%,0%,0%,2%,0%) Follicular 24% (0%,0%,1%,17%,6%) Hodgkin 21% (0%,3%,8%,7%,4%) Mantle Cell 3% (0%,0%,0%,3%,0%) T-Cell 15% (0%,1%,2%,11%,1%) Waldenstrom's 4% (0%,0%,0%,2%,2%) Other Indolent NHL 9% (0%,0%,0%,5%,4%) Other Aggressive NHL 8% (0%,0%,1%,5%,2%) Don t Know 10% (0%,0%,3%,3%,4%) Q6: What type of lymphoma do you have? Base : Australia 2012 (103)

38 DEMOGRAPHICS: Lymphoma Subtype What type of lymphoma do you have? Burkitts CLL/SLL DLBCL Follicular Hodgkin Mantle Cell T-Cell 0% 0% 0% 3% 2% 2% 3% 6% 6% 15% 21% 24% 24% 53% Q6: What type of lymphoma do you have? Base : Australia 2012 (103)

39 DEMOGRAPHICS: Lymphoma Subtype What type of lymphoma do you have? Waldenstrom's Other Indolent NHL Other Aggressive NHL Don t Know MALT/Marginal Zone 0% 0% 0% 0% 4% 9% 6% 6% 8% 10% Q6: What type of lymphoma do you have? Base : Australia 2012 (103)

40 DEMOGRAPHICS: Initial Diagnostic Tool What test did you take to determine your INITIAL diagnosis? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Needle biopsy 34% (0%,1%,8%,8%,8%) Nodal removal 33% (0%,0%,13%,10%,4%) Bone Marrow biopsy 21% (2%,0%,1%,2%,0%) Blood tests 11% (0%,1%,3%,2%,3%) Not sure 1% (0%,0%,0%,0%,0%) Q7: What test did you take to determine your INITIAL diagnosis? Base : Australia 2012 (103)

41 DEMOGRAPHICS: More Than 1 Bone Marrow Biopsy Did you have more than one bone marrow biopsy? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 50% (0%,0%,0%,5%,0%) No 50% (9%,0%,5%,5%,0%) Q8: Did you have more than one bone marrow biopsy? Base : Australia 2012 (22)

42 DEMOGRAPHICS: Initial Treatment WHAT was the INITIAL Treatment? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Radiation 6% (0%,0%,1%,2%,2%) Intravenous therapy 53% (0%,1%,11%,15%,5%) Oral medication therapy 2% (0%,0%,0%,0%,0%) Watch and Wait 14% (1%,0%,7%,0%,2%) Topical medication 4% (0%,0%,0%,0%,4%) Intravenous & oral therapy 22% (1%,1%,6%,5%,2%) Q9: WHAT was the INITIAL Treatment? Base : Australia 2012 (102)

43 DEMOGRAPHICS: Initial Treatment WHAT was the INITIAL Treatment? Radiation Intravenous therapy Oral medication therapy Watch and Wait Topical medication Intravenous & oral therapy Don't know Stem cell transplant 0% 2% 0% 0% 0% 0% 0% 4% 6% 6% 6% 14% 18% 22% 53% 71% Q9: WHAT was the INITIAL Treatment? Base : Australia 2012 (102)

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45 PRE-DIAGNOSIS : Understanding of Lymphoma How much you understood about lymphoma, if anything, prior to your diagnosis: CLL/SLL DLBCL Follicular Hodgkin T-Cell Other In-depth 4% (0%,0%,1%,2%,1%) Cancer of lymphatic system 30% (0%,0%,4%,8%,6%) A type of cancer 33% (1%,2%,11%,7%,3%) Only heard the word 24% (1%,0%,4%,5%,4%) Never even heard the word 9% (0%,0%,5%,0%,1%) Q10: How much you understood about lymphoma, if anything, prior to your diagnosis: Base : Australia 2012 (102)

46 PRE-DIAGNOSIS : Understanding of Lymphoma How much you understood about lymphoma, if anything, prior to your diagnosis: In-depth Cancer of lymphatic system A type of cancer Only heard the word Never even heard the word 0% 0% 4% 6% 6% 9% 24% 30% 33% 88% Q10: How much you understood about lymphoma, if anything, prior to your diagnosis: Base : Australia 2012 (102)

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48 BEING DIAGNOSED: Initial Symptoms Looking back, did you have any of the following symptoms? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Painless swollen gland/lump 19% (0%,0%,6%,5%,2%) Night sweats 16% (0%,0%,3%,5%,3%) Unexplained fever 4% (0%,0%,1%,2%,1%) Weight loss 10% (0%,0%,1%,3%,2%) Fatigue 21% (1%,1%,4%,6%,3%) Persistent cough 7% (0%,0%,1%,3%,1%) Breathlessness 6% (0%,0%,0%,3%,0%) Persistent itching 6% (0%,0%,1%,3%,1%) Headaches,Dizziness,Bleeding 3% (0%,0%,1%,1%,0%) Other 9% (0%,0%,1%,2%,2%) Q11: Looking back, did you have any of the following symptoms? Base : Australia 2012 (303)

49 BEING DIAGNOSED: Initial Symptoms Looking back, did you have any of the following symptoms? Painless swollen gland/lump Night sweats Unexplained fever Weight loss Fatigue Persistent cough Breathlessness 4% 5% 5% 5% 5% 6% 7% 10% 12% 16% 19% 21% 21% 21% Q11: Looking back, did you have any of the following symptoms? Base : Australia 2012 (303)

50 BEING DIAGNOSED: Initial Symptoms Looking back, did you have any of the following symptoms? Persistent itching Headaches,Dizziness,Bleeding Other 0% 3% 6% 7% 9% 19% Q11: Looking back, did you have any of the following symptoms? Base : Australia 2012 (303)

51 BEING DIAGNOSED: Initial Prompt for Physician Visit What initially prompted you to go to the doctor? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Went for my yearly physical 9% (0%,0%,5%,0%,1%) Was just not feeling well 38% (1%,1%,6%,10%,7%) Had signs & symptoms 46% (0%,1%,12%,12%,6%) Don't know 7% (1%,0%,2%,1%,1%) Q12: What initially prompted you to go to the doctor? Base : Australia 2012 (106)

52 BEING DIAGNOSED: Initial Prompt for Physician Visit What initially prompted you to go to the doctor? Went for my yearly physical Was just not feeling well Had signs & symptoms Don't know 0% 0% 7% 9% 38% 44% 46% 56% Q12: What initially prompted you to go to the doctor? Base : Australia 2012 (106)

53 BEING DIAGNOSED: Time To First Visit to Physician Estimated time between first experiencing symptoms and first visit to a doctor? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Less than 6 mos 69% (0%,2%,16%,15%,10%) 6-12 months 19% (0%,0%,5%,6%,2%) 1-2 years 4% (0%,0%,1%,0%,1%) 2-5 years 3% (1%,0%,1%,0%,1%) More than 5 years 2% (0%,0%,0%,1%,0%) Not sure 4% (1%,0%,2%,0%,1%) Q13: Estimated time between first experiencing symptoms and first visit to a doctor? Base : Australia 2012 (102)

54 BEING DIAGNOSED: Initial Diagnosis What was the doctor s diagnosis for the INITIAL symptoms? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Cold Virus Infection 16% (1%,0%,1%,7%,1%) Flu 3% (0%,0%,0%,1%,1%) Asthma 1% (0%,0%,0%,1%,0%) Glands/enlarged glands 12% (0%,0%,4%,4%,1%) Glandular fever 4% (0%,0%,1%,1%,0%) Cysts 4% (0%,0%,1%,1%,0%) Cancer (various) 4% (0%,0%,0%,0%,1%) Lymphoma 17% (1%,1%,6%,2%,1%) Hernia 1% (0%,0%,1%,0%,0%) Back pain 1% (0%,0%,0%,1%,0%) Dermatitis/itchy skin/rash 7% (0%,0%,0%,2%,4%) Stress 4% (1%,0%,1%,2%,0%) No diagnosis 15% (0%,0%,6%,4%,2%) Others 13% (0%,1%,1%,6%,0%) Q14: What was the doctor s diagnosis for the INITIAL symptoms? Base : Australia 2012 (139)

55 BEING DIAGNOSED: Initial Diagnosis What was the doctor s diagnosis for the INITIAL symptoms? Needle biopsy Nodal removal Bone Marrow Blood tests Not sure Cold Virus Infection 16% (3%,7%,4%,2%,0%) Flu 3% (1%,1%,1%,0%,0%) Asthma 1% (1%,0%,0%,0%,0%) Glands/enlarged glands 12% (4%,6%,1%,1%,0%) Glandular fever 4% (2%,1%,1%,0%,0%) Cysts 4% (1%,2%,1%,0%,0%) Cancer (various) 4% (1%,1%,1%,1%,0%) Lymphoma 17% (4%,6%,4%,3%,0%) Hernia 1% (0%,1%,0%,0%,0%) Back pain 1% (1%,0%,0%,0%,0%) Dermatitis/itchy skin/rash 7% (4%,2%,0%,1%,0%) Stress 4% (1%,1%,1%,1%,0%) No diagnosis 15% (6%,6%,3%,1%,0%) Others 13% (5%,3%,3%,2%,0%) Q14: What was the doctor s diagnosis for the INITIAL symptoms? Base : Australia 2012 (139)

56 BEING DIAGNOSED: Initial Diagnosis What was the doctor s diagnosis for the INITIAL symptoms? General practitioner Lymphoma oncologist Haematologist Surgeon Other Speciality Cold Virus Infection 11% (7%,0%,1%,0%,1%,0%,1%) Flu 2% (1%,0%,0%,0%,0%,0%,0%) Asthma 2% (1%,0%,0%,0%,0%,0%,0%) Glands/enlarged glands 9% (5%,0%,0%,0%,1%,1%,1%) Glandular fever 2% (1%,0%,0%,0%,0%,0%,0%) Cysts 3% (1%,0%,0%,0%,0%,0%,0%) Dermatologist Cancer (various) 5% (1%,0%,1%,0%,1%,1%,1%) General oncologist Q14: What was the doctor s diagnosis for the INITIAL symptoms? Base : Australia 2012 (139)

57 BEING DIAGNOSED: Initial Diagnosis What was the doctor s diagnosis for the INITIAL symptoms? General practitioner Dermatologist General oncologist Lymphoma oncologist Haematologist Surgeon Other Speciality Lymphoma 19% (5%,2%,2%,1%,4%,1%,2%) Hernia 1% (0%,0%,0%,0%,0%,0%,0%) Back pain 3% (1%,0%,0%,0%,0%,0%,1%) Dermatitis/itchy skin/rash 13% (4%,7%,0%,0%,1%,0%,1%) Stress 5% (2%,0%,0%,0%,0%,0%,0%) No diagnosis 14% (7%,1%,1%,1%,2%,1%,2%) Others 14% (6%,1%,1%,0%,1%,1%,3%) Q14: What was the doctor s diagnosis for the INITIAL symptoms? Base : Australia 2012 (139)

58 BEING DIAGNOSED: Initial Diagnosis What was the doctor s diagnosis for the INITIAL symptoms? Cold Virus Infection 16% (0%,1%,4%,9%,2%) Flu 3% (0%,1%,0%,2%,0%) Asthma 1% (0%,0%,0%,1%,0%) Glands/enlarged glands 12% (0%,0%,2%,7%,2%) Glandular fever 4% (0%,1%,1%,3%,0%) Cysts 4% (0%,0%,1%,1%,2%) Cancer (various) 4% (0%,0%,1%,1%,1%) Lymphoma 17% (0%,1%,2%,8%,6%) Hernia 1% (0%,0%,0%,1%,0%) Back pain 1% (0%,0%,0%,1%,0%) Dermatitis/itchy skin/rash 7% (0%,0%,1%,5%,0%) Stress 4% (0%,0%,1%,2%,0%) No diagnosis 15% (0%,1%,1%,8%,4%) Others 13% (0%,1%,3%,6%,3%) Q14: What was the doctor s diagnosis for the INITIAL symptoms? Base : Australia 2012 (139)

59 BEING DIAGNOSED: Prescription for Initial Diagnosis Were you given any medication for your initial diagnosis? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 34% (1%,1%,6%,9%,7%) No 66% (1%,1%,19%,13%,8%) Q15: Were you given any medication for your initial diagnosis? Base : Australia 2012 (102)

60 BEING DIAGNOSED: Prescription for Initial Diagnosis Were you given any medication for your initial diagnosis? Yes 34% (0%,0%,4%,24%,7%) No 66% (0%,5%,10%,34%,17%) Q15: Were you given any medication for your initial diagnosis? Base : Australia 2012 (102)

61 BEING DIAGNOSED: Prescription for Initial Diagnosis Were you given any medication for your initial diagnosis? Yes No 34% 38% 63% 66% Q15: Were you given any medication for your initial diagnosis? Base : Australia 2012 (102)

62 BEING DIAGNOSED: Type of Physician at Initial Diagnosis What type of doctor were you in the care of at initial diagnosis? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other General practitioner 57% (1%,2%,13%,14%,8%) Dermatologist 6% (0%,0%,0%,1%,5%) General oncologist 6% (0%,0%,3%,0%,2%) Lymphoma oncologist 3% (0%,0%,2%,0%,1%) Haematologist 14% (1%,1%,3%,5%,0%) Surgeon 5% (0%,0%,2%,1%,0%) Other Speciality 9% (0%,0%,3%,3%,1%) Q16: What type of doctor were you in the care of at initial diagnosis? Base : Australia 2012 (133)

63 BEING DIAGNOSED: Type of Physician at Initial Diagnosis What type of doctor were you in the care of at initial diagnosis? General practitioner Dermatologist General oncologist Lymphoma oncologist Haematologist Surgeon Other Speciality 0% 3% 0% 0% 0% 0% 5% 6% 6% 9% 14% 19% 57% 81% Q16: What type of doctor were you in the care of at initial diagnosis? Base : Australia 2012 (133)

64 BEING DIAGNOSED: Desire or Suggestion for Second Opinion Did you or did someone in your community ever want you to get a second opinion? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 29% (0%,0%,7%,11%,3%) No 69% (2%,2%,18%,11%,12%) Not sure 2% (0%,0%,0%,0%,0%) Q18: Did you or did someone in your community ever want you to get a second opinion? Base : Australia 2012 (102)

65 BEING DIAGNOSED: Desire or Suggestion for Second Opinion Did you or did someone in your community ever want you to get a second opinion? Yes No Not sure 2% 0% 29% 31% 69% 69% Q18: Did you or did someone in your community ever want you to get a second opinion? Base : Australia 2012 (102)

66 BEING DIAGNOSED: Second Opinions Sought Did you end up getting one? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 30% (0%,0%,6%,11%,4%) No 67% (2%,1%,19%,11%,11%) Not sure 3% (0%,1%,0%,0%,0%) Q19: Did you end up getting one? Base : Australia 2012 (102)

67 BEING DIAGNOSED: Second Opinions Sought Did you end up getting one? Yes No Not sure 3% 0% 30% 31% 69% 67% Q19: Did you end up getting one? Base : Australia 2012 (102)

68 BEING DIAGNOSED: Timing of Accurate Diagnosis Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis) CLL/SLL DLBCL Follicular Hodgkin T-Cell Other 1-2 weeks 23% (1%,1%,6%,4%,4%) 3-4 weeks 29% (0%,1%,6%,3%,3%) 2-4 months 24% (0%,0%,7%,8%,2%) 5-10 months 14% (0%,0%,2%,7%,2%) 1-2 years 5% (0%,0%,2%,0%,2%) 3-4 years 1% (0%,0%,1%,0%,0%) 4+ years 4% (1%,0%,1%,0%,2%) Don't know 1% (0%,0%,0%,0%,0%) Q20: Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis) Base : Australia 2012 (102)

69 BEING DIAGNOSED: Timing of Accurate Diagnosis Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis) weeks 3-4 weeks 2-4 months 5-10 months 1-2 years 3-4 years 4+ years Don't know 0% 0% 1% 1% 0% 4% 5% 6% 13% 14% 19% 19% 23% 24% 29% 44% Q20: Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis) Base : Australia 2012 (102)

70 BEING DIAGNOSED: Suspicion of Lymphoma Was lymphoma ever suspected prior to your official diagnosis? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 15% (0%,0%,2%,7%,2%) No 82% (2%,2%,21%,14%,13%) Not sure 3% (0%,0%,2%,1%,0%) Q21: Was lymphoma ever suspected prior to your official diagnosis? Base : Australia 2012 (102)

71 BEING DIAGNOSED: Suspicion of Lymphoma Was lymphoma ever suspected prior to your official diagnosis? Yes No Not sure 3% 0% 6% 15% 82% 94% Q21: Was lymphoma ever suspected prior to your official diagnosis? Base : Australia 2012 (102)

72 BEING DIAGNOSED: Suspicion Discussed with Physician Was this suspicion ever discussed with your doctor? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 60% (0%,0%,7%,20%,13%) No 40% (0%,0%,7%,27%,0%) Q22: Was this suspicion ever discussed with your doctor? Base : Australia 2012 (15)

73 BEING DIAGNOSED: Medical Care Experience How positive was your diagnosis experience in relation to the medical care? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Very satisfied 44% (0%,1%,10%,9%,4%) Satisfied 30% (1%,1%,9%,5%,5%) Moderately satisfied 15% (1%,0%,1%,6%,4%) Not satisfied at all 9% (0%,0%,3%,1%,1%) Very dissatisfied 3% (0%,0%,2%,1%,0%) Q23: How positive was your diagnosis experience in relation to the medical care? Base : Australia 2012 (101)

74 BEING DIAGNOSED: Medical Care Experience How positive was your diagnosis experience in relation to the medical care? Very satisfied Satisfied Moderately satisfied Not satisfied at all Very dissatisfied 3% 6% 9% 15% 19% 19% 25% 30% 31% 44% Q23: How positive was your diagnosis experience in relation to the medical care? Base : Australia 2012 (101)

75

76 CLINICAL TRIALS: Knowledge at Diagnosis At the time of diagnosis, did you know what a clinical trial was? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 60% (0%,1%,14%,13%,8%) No 40% (2%,1%,10%,9%,6%) Q24: At the time of diagnosis, did you know what a clinical trial was? Base : Australia 2012 (100)

77 CLINICAL TRIALS: Knowledge at Diagnosis At the time of diagnosis, did you know what a clinical trial was? Yes No 6% 40% 60% 94% Q24: At the time of diagnosis, did you know what a clinical trial was? Base : Australia 2012 (100)

78 CLINICAL TRIALS: Offering as Treatment Option Approached to participate in a clinical trial as an option to treatment? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 14% (0%,1%,4%,4%,3%) No 86% (2%,1%,20%,18%,11%) Q25: Approached to participate in a clinical trial as an option to treatment? Base : Australia 2012 (100)

79 CLINICAL TRIALS: Offering as Treatment Option Approached to participate in a clinical trial as an option to treatment? In remission > 2 years Newly diagnosed Diagnosed & yet to be treated Treatment free > 5 years Have relapsed In remission > 6 months Relapsed and in treatment Yes 14% (0%,0%,4%,4%,3%,3%,0%) No 86% (9%,5%,29%,20%,12%,3%,8%) Q25: Approached to participate in a clinical trial as an option to treatment? Base : Australia 2012 (100)

80 CLINICAL TRIALS: Offering as Treatment Option Approached to participate in a clinical trial as an option to treatment? Yes No 14% 19% 81% 86% Q25: Approached to participate in a clinical trial as an option to treatment? Base : Australia 2012 (100)

81 CLINICAL TRIALS: Who Discussed Option With Patient Who discussed this option of treatment with you? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Doctor 74% (0%,5%,21%,21%,16%) Nurse 11% (0%,0%,0%,11%,0%) Patient organization 11% (0%,0%,5%,5%,0%) Personal research 5% (0%,0%,5%,0%,0%) Q26: Who discussed this option of treatment with you? Base : Australia 2012 (19)

82 CLINICAL TRIALS: Agreed to Participate Did you agree to participate? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 100% (0%,7%,29%,29%,21%) Q27: Did you agree to participate? Base : Australia 2012 (14)

83 CLINICAL TRIALS: Agreed to Participate Did you agree to participate? In remission > 2 years Newly diagnosed Diagnosed & yet to be treated Treatment free > 5 years Have relapsed In remission > 6 months Relapsed and in treatment Yes 100% (0%,0%,29%,29%,21%,21%,0%) Q27: Did you agree to participate? Base : Australia 2012 (14)

84 CLINICAL TRIALS: If Asked, Would Patient Participate How likely is it that you would agree to participate in a clinical trial if asked? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 40% (2%,1%,6%,9%,9%) No 5% (0%,0%,1%,0%,0%) Need more information 56% (0%,0%,16%,12%,3%) Q28: How likely is it that you would agree to participate in a clinical trial if asked? Base : Australia 2012 (86)

85 CLINICAL TRIALS: If Asked, Would Patient Participate How likely is it that you would agree to participate in a clinical trial if asked? Yes No Need more information 0% 5% 40% 44% 56% 56% Q28: How likely is it that you would agree to participate in a clinical trial if asked? Base : Australia 2012 (86)

86 CLINICAL TRIALS: Reasons for Not Participating What were your reasons for not wanting to participate? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Lack of understanding 2% (0%,0%,0%,0%,0%) Wanted a successful treatment 18% (0%,0%,5%,3%,0%) Not enough information 34% (0%,0%,10%,3%,5%) Was too involved for me 2% (0%,0%,2%,0%,0%) Clinic was too far away 3% (0%,0%,0%,2%,0%) Could not afford it 3% (0%,0%,0%,2%,2%) Other 38% (0%,0%,8%,10%,2%) Q29: What were your reasons for not wanting to participate? Base : Australia 2012 (61)

87

88 QUALITY OF LIFE: Barriers to Receiving Adequate Treatment Have you experienced any serious barriers to receiving adequate treatment? Female Male Financial 14% (6%/8%) Access to treatment center 13% (4%/8%) Access to up to date treatment 5% (1%/4%) Wait time to treatment too long 5% (1%/4%) Personal support 8% (7%/1%) Unable to give up care giver role 4% (4%/0%) Other 51% (31%/20%) Q30: Have you experienced any serious barriers to receiving adequate treatment? Base : Australia 2012 (112)

89 QUALITY OF LIFE: Barriers to Receiving Adequate Treatment Have you experienced any serious barriers to receiving adequate treatment? Home Treatment Hospital Treatment Financial 15% (0%,15%) Access to treatment center 14% (1%,13%) Access to up to date treatment 4% (0%,4%) Wait time to treatment too long 5% (0%,5%) Personal support 7% (1%,6%) Unable to give up care giver role 4% (1%,3%) Other 51% (3%,48%) Q30: Have you experienced any serious barriers to receiving adequate treatment? Base : Australia 2012 (112)

90 QUALITY OF LIFE: Barriers to Receiving Adequate Treatment Have you experienced any serious barriers to receiving adequate treatment? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Financial 14% (0%,1%,3%,5%,2%) Access to treatment center 13% (0%,1%,1%,3%,4%) Access to up to date treatment 5% (0%,0%,2%,1%,1%) Wait time to treatment too long 5% (0%,1%,1%,1%,0%) Personal support 8% (0%,1%,2%,2%,3%) Unable to give up care giver role 4% (0%,0%,0%,3%,1%) Other 51% (2%,1%,14%,8%,4%) Q30: Have you experienced any serious barriers to receiving adequate treatment? Base : Australia 2012 (112)

91 QUALITY OF LIFE: Barriers to Receiving Adequate Treatment Have you experienced any serious barriers to receiving adequate treatment? Financial 14% (0%,1%,2%,10%,2%) Access to treatment center 13% (0%,0%,1%,9%,3%) Access to up to date treatment 5% (0%,1%,0%,1%,4%) Wait time to treatment too long 5% (0%,0%,1%,4%,0%) Personal support 8% (0%,0%,2%,6%,0%) Unable to give up care giver role 4% (0%,0%,4%,0%,0%) Other 51% (0%,3%,5%,29%,14%) Q30: Have you experienced any serious barriers to receiving adequate treatment? Base : Australia 2012 (112)

92 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fatigue Female Male Impacted me a lot 69% (42%/27%) Impacted me a little 22% (8%/13%) Have not impacted me at all 9% (5%/4%) Q31.01: Fatigue Base : Australia 2012 (97)

93 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fatigue Home Treatment Hospital Treatment Impacted me a lot 73% (5%,68%) Impacted me a little 20% (1%,19%) Have not impacted me at all 7% (0%,7%) Q31.01: Fatigue Base : Australia 2012 (97)

94 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fatigue CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 69% (2%,2%,15%,15%,8%) Impacted me a little 22% (0%,0%,4%,6%,3%) Have not impacted me at all 9% (0%,0%,3%,1%,3%) Q31.01: Fatigue Base : Australia 2012 (97)

95 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fatigue Impacted me a lot 69% (0%,5%,11%,39%,13%) Impacted me a little 22% (0%,0%,1%,11%,9%) Have not impacted me at all 9% (0%,0%,2%,7%,0%) Q31.01: Fatigue Base : Australia 2012 (97)

96 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Hair loss Female Male Impacted me a lot 35% (24%/11%) Impacted me a little 33% (20%/13%) Have not impacted me at all 33% (12%/21%) Q31.02: Hair loss Base : Australia 2012 (95)

97 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Hair loss Home Treatment Hospital Treatment Impacted me a lot 38% (0%,38%) Impacted me a little 33% (1%,32%) Have not impacted me at all 29% (5%,24%) Q31.02: Hair loss Base : Australia 2012 (95)

98 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Hair loss CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 35% (0%,0%,7%,7%,2%) Impacted me a little 33% (0%,2%,8%,11%,3%) Have not impacted me at all 33% (1%,0%,8%,4%,8%) Q31.02: Hair loss Base : Australia 2012 (95)

99 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Hair loss Impacted me a lot 35% (0%,2%,3%,19%,11%) Impacted me a little 33% (0%,2%,5%,19%,6%) Have not impacted me at all 33% (0%,1%,6%,19%,6%) Q31.02: Hair loss Base : Australia 2012 (95)

100 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Muscle weakness Female Male Impacted me a lot 40% (19%/20%) Impacted me a little 42% (23%/19%) Have not impacted me at all 18% (14%/4%) Q31.03: Muscle weakness Base : Australia 2012 (93)

101 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Muscle weakness Home Treatment Hospital Treatment Impacted me a lot 41% (3%,38%) Impacted me a little 42% (0%,42%) Have not impacted me at all 17% (4%,14%) Q31.03: Muscle weakness Base : Australia 2012 (93)

102 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Muscle weakness CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 40% (1%,2%,8%,13%,3%) Impacted me a little 42% (1%,0%,12%,8%,5%) Have not impacted me at all 18% (0%,0%,4%,2%,6%) Q31.03: Muscle weakness Base : Australia 2012 (93)

103 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Muscle weakness Impacted me a lot 40% (0%,3%,6%,25%,5%) Impacted me a little 42% (0%,2%,3%,24%,13%) Have not impacted me at all 18% (0%,0%,4%,12%,2%) Q31.03: Muscle weakness Base : Australia 2012 (93)

104 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Trouble concentrating Female Male Impacted me a lot 42% (22%/19%) Impacted me a little 44% (23%/20%) Have not impacted me at all 15% (10%/5%) Q31.04: Trouble concentrating Base : Australia 2012 (94)

105 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Trouble concentrating Home Treatment Hospital Treatment Impacted me a lot 42% (3%,40%) Impacted me a little 47% (3%,45%) Have not impacted me at all 11% (1%,10%) Q31.04: Trouble concentrating Base : Australia 2012 (94)

106 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Trouble concentrating CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 42% (0%,1%,9%,12%,9%) Impacted me a little 44% (1%,1%,10%,10%,3%) Have not impacted me at all 15% (0%,0%,5%,1%,3%) Q31.04: Trouble concentrating Base : Australia 2012 (94)

107 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Trouble concentrating Impacted me a lot 42% (0%,3%,9%,26%,4%) Impacted me a little 44% (0%,2%,5%,23%,13%) Have not impacted me at all 15% (0%,0%,1%,10%,4%) Q31.04: Trouble concentrating Base : Australia 2012 (94)

108 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Sleeplessness Female Male Impacted me a lot 34% (21%/13%) Impacted me a little 42% (25%/17%) Have not impacted me at all 24% (9%/15%) Q31.05: Sleeplessness Base : Australia 2012 (92)

109 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Sleeplessness Home Treatment Hospital Treatment Impacted me a lot 35% (3%,32%) Impacted me a little 46% (4%,42%) Have not impacted me at all 20% (0%,20%) Q31.05: Sleeplessness Base : Australia 2012 (92)

110 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Sleeplessness CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 34% (0%,0%,8%,8%,2%) Impacted me a little 42% (0%,0%,10%,13%,8%) Have not impacted me at all 24% (1%,2%,7%,2%,4%) Q31.05: Sleeplessness Base : Australia 2012 (92)

111 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Sleeplessness Impacted me a lot 34% (0%,2%,3%,23%,5%) Impacted me a little 42% (0%,3%,10%,17%,12%) Have not impacted me at all 24% (0%,0%,2%,17%,4%) Q31.05: Sleeplessness Base : Australia 2012 (92)

112 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Changes in taste and smell Female Male Impacted me a lot 32% (18%/13%) Impacted me a little 34% (21%/13%) Have not impacted me at all 35% (15%/20%) Q31.06: Changes in taste and smell Base : Australia 2012 (92)

113 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Changes in taste and smell Home Treatment Hospital Treatment Impacted me a lot 33% (0%,33%) Impacted me a little 38% (3%,35%) Have not impacted me at all 29% (4%,26%) Q31.06: Changes in taste and smell Base : Australia 2012 (92)

114 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Changes in taste and smell CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 32% (0%,1%,5%,11%,3%) Impacted me a little 34% (0%,0%,11%,9%,4%) Have not impacted me at all 35% (1%,1%,8%,3%,7%) Q31.06: Changes in taste and smell Base : Australia 2012 (92)

115 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Changes in taste and smell Impacted me a lot 32% (0%,4%,4%,16%,7%) Impacted me a little 34% (0%,1%,7%,18%,8%) Have not impacted me at all 35% (0%,0%,4%,23%,8%) Q31.06: Changes in taste and smell Base : Australia 2012 (92)

116 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Bowel changes Female Male Impacted me a lot 28% (17%/11%) Impacted me a little 43% (21%/22%) Have not impacted me at all 29% (17%/12%) Q31.07: Bowel changes Base : Australia 2012 (90)

117 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Bowel changes Home Treatment Hospital Treatment Impacted me a lot 30% (1%,29%) Impacted me a little 46% (3%,44%) Have not impacted me at all 24% (3%,21%) Q31.07: Bowel changes Base : Australia 2012 (90)

118 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Bowel changes CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 28% (0%,1%,6%,6%,2%) Impacted me a little 43% (0%,1%,12%,13%,4%) Have not impacted me at all 29% (1%,0%,6%,3%,8%) Q31.07: Bowel changes Base : Australia 2012 (90)

119 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Bowel changes Impacted me a lot 28% (0%,1%,3%,17%,7%) Impacted me a little 43% (0%,3%,9%,22%,9%) Have not impacted me at all 29% (0%,0%,3%,20%,6%) Q31.07: Bowel changes Base : Australia 2012 (90)

120 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Aching joints Female Male Impacted me a lot 22% (14%/8%) Impacted me a little 41% (21%/20%) Have not impacted me at all 37% (19%/18%) Q31.08: Aching joints Base : Australia 2012 (90)

121 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Aching joints Home Treatment Hospital Treatment Impacted me a lot 22% (3%,19%) Impacted me a little 43% (3%,41%) Have not impacted me at all 36% (1%,34%) Q31.08: Aching joints Base : Australia 2012 (90)

122 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Aching joints CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 22% (1%,0%,2%,7%,3%) Impacted me a little 41% (1%,1%,9%,11%,7%) Have not impacted me at all 37% (0%,1%,12%,6%,4%) Q31.08: Aching joints Base : Australia 2012 (90)

123 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Aching joints Impacted me a lot 22% (0%,2%,6%,11%,3%) Impacted me a little 41% (0%,1%,6%,24%,10%) Have not impacted me at all 37% (0%,1%,3%,23%,9%) Q31.08: Aching joints Base : Australia 2012 (90)

124 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Nausea and vomiting Female Male Impacted me a lot 20% (12%/8%) Impacted me a little 31% (17%/14%) Have not impacted me at all 49% (24%/24%) Q31.09: Nausea and vomiting Base : Australia 2012 (90)

125 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Nausea and vomiting Home Treatment Hospital Treatment Impacted me a lot 23% (3%,20%) Impacted me a little 34% (1%,33%) Have not impacted me at all 44% (3%,41%) Q31.09: Nausea and vomiting Base : Australia 2012 (90)

126 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Nausea and vomiting CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 20% (0%,1%,1%,8%,1%) Impacted me a little 31% (0%,1%,9%,9%,2%) Have not impacted me at all 49% (1%,0%,14%,6%,11%) Q31.09: Nausea and vomiting Base : Australia 2012 (90)

127 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Nausea and vomiting Impacted me a lot 20% (0%,2%,7%,8%,3%) Impacted me a little 31% (0%,3%,3%,17%,8%) Have not impacted me at all 49% (0%,0%,6%,32%,11%) Q31.09: Nausea and vomiting Base : Australia 2012 (90)

128 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Problems fighting infections Female Male Impacted me a lot 28% (17%/11%) Impacted me a little 32% (17%/15%) Have not impacted me at all 40% (22%/18%) Q31.1: Problems fighting infections Base : Australia 2012 (88)

129 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Problems fighting infections Home Treatment Hospital Treatment Impacted me a lot 31% (0%,31%) Impacted me a little 32% (3%,30%) Have not impacted me at all 37% (4%,33%) Q31.1: Problems fighting infections Base : Australia 2012 (88)

130 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Problems fighting infections CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 28% (0%,0%,6%,8%,2%) Impacted me a little 32% (0%,2%,7%,8%,1%) Have not impacted me at all 40% (1%,0%,11%,7%,9%) Q31.1: Problems fighting infections Base : Australia 2012 (88)

131 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Problems fighting infections Impacted me a lot 28% (0%,2%,3%,14%,9%) Impacted me a little 32% (0%,0%,6%,17%,9%) Have not impacted me at all 40% (0%,2%,7%,26%,5%) Q31.1: Problems fighting infections Base : Australia 2012 (88)

132 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Memory loss Female Male Impacted me a lot 22% (13%/9%) Impacted me a little 41% (20%/21%) Have not impacted me at all 37% (22%/14%) Q31.11: Memory loss Base : Australia 2012 (90)

133 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Memory loss Home Treatment Hospital Treatment Impacted me a lot 23% (1%,21%) Impacted me a little 43% (1%,41%) Have not impacted me at all 35% (4%,31%) Q31.11: Memory loss Base : Australia 2012 (90)

134 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Memory loss CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 22% (0%,0%,4%,7%,3%) Impacted me a little 41% (1%,2%,8%,10%,6%) Have not impacted me at all 37% (0%,0%,11%,6%,7%) Q31.11: Memory loss Base : Australia 2012 (90)

135 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Memory loss Impacted me a lot 22% (0%,0%,7%,14%,1%) Impacted me a little 41% (0%,3%,6%,20%,12%) Have not impacted me at all 37% (0%,2%,2%,24%,8%) Q31.11: Memory loss Base : Australia 2012 (90)

136 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Skin reactions Female Male Impacted me a lot 20% (13%/7%) Impacted me a little 34% (13%/20%) Have not impacted me at all 46% (27%/19%) Q31.12: Skin reactions Base : Australia 2012 (89)

137 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Skin reactions Home Treatment Hospital Treatment Impacted me a lot 19% (4%,15%) Impacted me a little 36% (3%,33%) Have not impacted me at all 46% (0%,46%) Q31.12: Skin reactions Base : Australia 2012 (89)

138 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Skin reactions CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 20% (0%,0%,1%,7%,7%) Impacted me a little 34% (0%,1%,10%,10%,4%) Have not impacted me at all 46% (1%,1%,12%,6%,3%) Q31.12: Skin reactions Base : Australia 2012 (89)

139 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Skin reactions Impacted me a lot 20% (0%,1%,7%,9%,3%) Impacted me a little 34% (0%,1%,6%,19%,8%) Have not impacted me at all 46% (0%,3%,3%,29%,10%) Q31.12: Skin reactions Base : Australia 2012 (89)

140 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Mucositis/mouth ulcers Female Male Impacted me a lot 21% (9%/12%) Impacted me a little 29% (14%/15%) Have not impacted me at all 50% (32%/18%) Q31.13: Mucositis/mouth ulcers Base : Australia 2012 (92)

141 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Mucositis/mouth ulcers Home Treatment Hospital Treatment Impacted me a lot 22% (1%,21%) Impacted me a little 31% (0%,31%) Have not impacted me at all 48% (5%,43%) Q31.13: Mucositis/mouth ulcers Base : Australia 2012 (92)

142 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Mucositis/mouth ulcers CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 21% (0%,1%,4%,4%,2%) Impacted me a little 29% (0%,1%,7%,9%,2%) Have not impacted me at all 50% (1%,0%,13%,9%,10%) Q31.13: Mucositis/mouth ulcers Base : Australia 2012 (92)

143 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Mucositis/mouth ulcers Impacted me a lot 21% (0%,3%,2%,10%,5%) Impacted me a little 29% (0%,0%,4%,16%,9%) Have not impacted me at all 50% (0%,2%,9%,30%,9%) Q31.13: Mucositis/mouth ulcers Base : Australia 2012 (92)

144 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of appetite Female Male Impacted me a lot 21% (13%/8%) Impacted me a little 30% (15%/14%) Have not impacted me at all 50% (25%/24%) Q31.14: Loss of appetite Base : Australia 2012 (91)

145 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of appetite Home Treatment Hospital Treatment Impacted me a lot 22% (0%,22%) Impacted me a little 31% (3%,28%) Have not impacted me at all 47% (4%,43%) Q31.14: Loss of appetite Base : Australia 2012 (91)

146 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of appetite CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 21% (0%,0%,2%,7%,3%) Impacted me a little 30% (0%,2%,5%,11%,2%) Have not impacted me at all 50% (1%,0%,15%,5%,9%) Q31.14: Loss of appetite Base : Australia 2012 (91)

147 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of appetite Impacted me a lot 21% (0%,4%,3%,11%,2%) Impacted me a little 30% (0%,0%,8%,15%,7%) Have not impacted me at all 50% (0%,1%,4%,32%,12%) Q31.14: Loss of appetite Base : Australia 2012 (91)

148 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Change in sexual function Female Male Impacted me a lot 26% (15%/11%) Impacted me a little 35% (17%/18%) Have not impacted me at all 39% (22%/17%) Q31.15: Change in sexual function Base : Australia 2012 (89)

149 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Change in sexual function Home Treatment Hospital Treatment Impacted me a lot 26% (0%,26%) Impacted me a little 36% (1%,35%) Have not impacted me at all 38% (5%,33%) Q31.15: Change in sexual function Base : Australia 2012 (89)

150 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Change in sexual function CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 26% (0%,0%,6%,7%,2%) Impacted me a little 35% (1%,1%,10%,10%,2%) Have not impacted me at all 39% (0%,1%,8%,6%,11%) Q31.15: Change in sexual function Base : Australia 2012 (89)

151 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Change in sexual function Impacted me a lot 26% (0%,1%,3%,19%,2%) Impacted me a little 35% (0%,0%,8%,21%,6%) Have not impacted me at all 39% (0%,4%,4%,19%,11%) Q31.15: Change in sexual function Base : Australia 2012 (89)

152 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight loss Female Male Impacted me a lot 24% (17%/7%) Impacted me a little 21% (7%/15%) Have not impacted me at all 55% (31%/24%) Q31.16: Weight loss Base : Australia 2012 (89)

153 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight loss Home Treatment Hospital Treatment Impacted me a lot 23% (1%,22%) Impacted me a little 22% (1%,21%) Have not impacted me at all 55% (4%,51%) Q31.16: Weight loss Base : Australia 2012 (89)

154 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight loss CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 24% (1%,0%,3%,6%,3%) Impacted me a little 21% (0%,0%,3%,2%,4%) Have not impacted me at all 55% (1%,2%,17%,13%,7%) Q31.16: Weight loss Base : Australia 2012 (89)

155 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight loss Impacted me a lot 24% (0%,1%,3%,11%,8%) Impacted me a little 21% (0%,0%,3%,12%,6%) Have not impacted me at all 55% (0%,4%,9%,35%,7%) Q31.16: Weight loss Base : Australia 2012 (89)

156 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fluid retention Female Male Impacted me a lot 8% (6%/2%) Impacted me a little 26% (9%/17%) Have not impacted me at all 66% (38%/28%) Q31.17: Fluid retention Base : Australia 2012 (87)

157 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fluid retention Home Treatment Hospital Treatment Impacted me a lot 8% (0%,8%) Impacted me a little 26% (3%,23%) Have not impacted me at all 66% (4%,62%) Q31.17: Fluid retention Base : Australia 2012 (87)

158 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fluid retention CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 8% (0%,0%,2%,3%,1%) Impacted me a little 26% (0%,1%,5%,8%,6%) Have not impacted me at all 66% (1%,1%,17%,11%,8%) Q31.17: Fluid retention Base : Australia 2012 (87)

159 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Fluid retention Impacted me a lot 8% (0%,1%,1%,6%,0%) Impacted me a little 26% (0%,2%,0%,17%,7%) Have not impacted me at all 66% (0%,2%,14%,36%,14%) Q31.17: Fluid retention Base : Australia 2012 (87)

160 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight gain Female Male Impacted me a lot 13% (10%/2%) Impacted me a little 13% (6%/7%) Have not impacted me at all 75% (39%/36%) Q31.18: Weight gain Base : Australia 2012 (88)

161 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight gain Home Treatment Hospital Treatment Impacted me a lot 14% (0%,14%) Impacted me a little 12% (1%,10%) Have not impacted me at all 74% (5%,69%) Q31.18: Weight gain Base : Australia 2012 (88)

162 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight gain CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 13% (0%,0%,2%,6%,2%) Impacted me a little 13% (0%,0%,5%,3%,0%) Have not impacted me at all 75% (1%,2%,17%,14%,14%) Q31.18: Weight gain Base : Australia 2012 (88)

163 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Weight gain Impacted me a lot 13% (0%,2%,2%,8%,0%) Impacted me a little 13% (0%,1%,1%,8%,2%) Have not impacted me at all 75% (0%,2%,11%,44%,17%) Q31.18: Weight gain Base : Australia 2012 (88)

164 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of fertility Female Male Impacted me a lot 12% (7%/5%) Impacted me a little 7% (4%/4%) Have not impacted me at all 81% (43%/38%) Q31.19: Loss of fertility Base : Australia 2012 (84)

165 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of fertility Home Treatment Hospital Treatment Impacted me a lot 13% (0%,13%) Impacted me a little 8% (1%,7%) Have not impacted me at all 79% (4%,75%) Q31.19: Loss of fertility Base : Australia 2012 (84)

166 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of fertility CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 12% (0%,0%,1%,5%,0%) Impacted me a little 7% (0%,0%,1%,1%,1%) Have not impacted me at all 81% (1%,2%,23%,17%,13%) Q31.19: Loss of fertility Base : Australia 2012 (84)

167 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Loss of fertility Impacted me a lot 12% (0%,1%,2%,7%,1%) Impacted me a little 7% (0%,1%,2%,1%,2%) Have not impacted me at all 81% (0%,4%,11%,51%,15%) Q31.19: Loss of fertility Base : Australia 2012 (84)

168 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Swelling of arms and legs Female Male Impacted me a lot 3% (2%/1%) Impacted me a little 15% (5%/10%) Have not impacted me at all 82% (47%/35%) Q31.2: Swelling of arms and legs Base : Australia 2012 (88)

169 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Swelling of arms and legs Home Treatment Hospital Treatment Impacted me a lot 4% (0%,4%) Impacted me a little 14% (3%,12%) Have not impacted me at all 82% (4%,78%) Q31.2: Swelling of arms and legs Base : Australia 2012 (88)

170 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Swelling of arms and legs CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Impacted me a lot 3% (0%,0%,0%,1%,0%) Impacted me a little 15% (0%,0%,3%,6%,5%) Have not impacted me at all 82% (1%,1%,20%,16%,10%) Q31.2: Swelling of arms and legs Base : Australia 2012 (88)

171 QUALITY OF LIFE: Impact on Sense of Well Being - Physical Swelling of arms and legs Impacted me a lot 3% (0%,1%,0%,2%,0%) Impacted me a little 15% (0%,0%,2%,5%,8%) Have not impacted me at all 82% (0%,5%,14%,51%,13%) Q31.2: Swelling of arms and legs Base : Australia 2012 (88)

172 QUALITY OF LIFE: Patient Experience Since Diagnosis Since your diagnosis, which of the following, if any, have you experienced? Female Male Changes in relationships with others 20% (12%/8%) Stresses related to financial issues 14% (8%/6%) Loss of self-esteem 11% (7%/4%) Concerns about body image changes 14% (9%/5%) Impact on my employment 14% (6%/8%) Difficulty with job or school 9% (7%/2%) Problems with insurance coverage 10% (6%/4%) Not understanding my options 3% (2%/1%) Difficulty using the health system 5% (3%/2%) Q32: Since your diagnosis, which of the following, if any, have you experienced? Base : Australia 2012 (250)

173 QUALITY OF LIFE: Patient Experience Since Diagnosis Since your diagnosis, which of the following, if any, have you experienced? Home Treatment Hospital Treatment Changes in relationships with others 19% (1%,18%) Stresses related to financial issues 15% (1%,14%) Loss of self-esteem 11% (1%,10%) Concerns about body image changes 15% (2%,13%) Impact on my employment 15% (1%,15%) Difficulty with job or school 8% (0%,8%) Problems with insurance coverage 10% (1%,10%) Not understanding my options 3% (0%,3%) Difficulty using the health system 6% (0%,6%) Q32: Since your diagnosis, which of the following, if any, have you experienced? Base : Australia 2012 (250)

174 QUALITY OF LIFE: Patient Experience Since Diagnosis Since your diagnosis, which of the following, if any, have you experienced? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Changes in relationships with others 20% (1%,1%,4%,5%,3%) Stresses related to financial issues 14% (0%,0%,3%,4%,2%) Loss of self-esteem 11% (1%,0%,2%,3%,1%) Concerns about body image changes 14% (0%,0%,3%,3%,2%) Impact on my employment 14% (0%,0%,4%,3%,2%) Difficulty with job or school 9% (0%,0%,2%,3%,2%) Problems with insurance coverage 10% (0%,0%,2%,3%,1%) Not understanding my options 3% (0%,0%,0%,1%,1%) Difficulty using the health system 5% (0%,0%,0%,2%,0%) Q32: Since your diagnosis, which of the following, if any, have you experienced? Base : Australia 2012 (250)

175 QUALITY OF LIFE: Patient Experience Since Diagnosis Since your diagnosis, which of the following, if any, have you experienced? Changes in relationships with others 20% (0%,2%,3%,12%,2%) Stresses related to financial issues 14% (0%,1%,2%,10%,1%) Loss of self-esteem 11% (0%,0%,2%,7%,1%) Concerns about body image changes 14% (0%,2%,2%,7%,3%) Impact on my employment 14% (0%,0%,1%,13%,0%) Difficulty with job or school 9% (0%,1%,2%,4%,1%) Problems with insurance coverage 10% (0%,0%,3%,5%,1%) Not understanding my options 3% (0%,0%,0%,2%,1%) Difficulty using the health system 5% (0%,0%,1%,3%,1%) Q32: Since your diagnosis, which of the following, if any, have you experienced? Base : Australia 2012 (250)

176 QUALITY OF LIFE: Highest Impact on Sense of Well Being Which two had the most impact on your sense of well being? Female Male Changes in relationships 19% (12%/8%) Stresses related to financial issues 16% (7%/9%) Loss of self-esteem 11% (6%/5%) Concerns about body image 15% (9%/6%) Loss of employment 16% (7%/9%) Difficulty on the job/school 6% (4%/2%) Problems getting insurance 7% (4%/3%) Not understanding my options 8% (5%/3%) Difficulty with the health system 2% (1%/1%) Q33: Which two had the most impact on your sense of well being? Base : Australia 2012 (172)

177 QUALITY OF LIFE: Highest Impact on Sense of Well Being Which two had the most impact on your sense of well being? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Changes in relationships 19% (1%,1%,5%,6%,2%) Stresses related to financial issues 16% (0%,1%,3%,5%,3%) Loss of self-esteem 11% (1%,0%,2%,1%,2%) Concerns about body image 15% (0%,0%,3%,3%,3%) Loss of employment 16% (0%,0%,6%,3%,2%) Difficulty on the job/school 6% (0%,0%,1%,2%,1%) Problems getting insurance 7% (0%,0%,1%,2%,0%) Not understanding my options 8% (0%,0%,1%,2%,2%) Difficulty with the health system 2% (0%,0%,1%,1%,0%) Q33: Which two had the most impact on your sense of well being? Base : Australia 2012 (172)

178 QUALITY OF LIFE: Highest Impact on Sense of Well Being Which two had the most impact on your sense of well being? In remission > 2 years Newly diagnosed Diagnosed & yet to be treated Treatment free > 5 years Have relapsed In remission > 6 months Relapsed and in treatment Changes in relationships 19% (1%,1%,7%,5%,2%,1%,2%) Stresses related to financial issues 16% (1%,1%,7%,2%,2%,2%,2%) Loss of self-esteem 11% (2%,1%,5%,3%,1%,0%,1%) Concerns about body image 15% (2%,1%,5%,3%,1%,1%,1%) Loss of employment 16% (1%,1%,5%,2%,3%,2%,3%) Difficulty on the job/school 6% (1%,0%,1%,2%,3%,0%,0%) Problems getting insurance 7% (0%,1%,1%,2%,2%,1%,0%) Not understanding my options 8% (1%,1%,3%,2%,1%,0%,1%) Difficulty with the health system 2% (0%,0%,0%,1%,1%,1%,0%) Q33: Which two had the most impact on your sense of well being? Base : Australia 2012 (172)

179 QUALITY OF LIFE: Discussion of Well Being with Physician Have you communicated any of this with your doctor? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 33% (1%,0%,8%,10%,5%) No 61% (1%,2%,15%,10%,9%) Not sure 6% (0%,0%,0%,2%,0%) Q34: Have you communicated any of this with your doctor? Base : Australia 2012 (98)

180 QUALITY OF LIFE: Helpfulness of Physician Was the doctor able to help you? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 63% (3%,0%,9%,22%,9%) No 25% (0%,0%,9%,9%,3%) Not sure 13% (0%,0%,6%,0%,3%) Q35: Was the doctor able to help you? Base : Australia 2012 (32)

181 QUALITY OF LIFE: Support Beyond Physician Did you seek support beyond your doctor? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Yes 50% (1%,1%,13%,14%,5%) No 50% (1%,1%,10%,8%,9%) Q36: Did you seek support beyond your doctor? Base : Australia 2012 (98)

182 QUALITY OF LIFE: Services Offered by Treatment Centre Which of the following services were offered to you by your treatment centre? Home Treatment Hospital Treatment Social worker 19% (1%,18%) Referral to external support provider 20% (0%,20%) Dietician/nutritionist 18% (1%,17%) Counsellor/psychologist 15% (1%,14%) Chaplain 5% (0%,5%) Physical therapy 5% (1%,5%) Pain management 7% (0%,7%) Complementary therapist 3% (0%,3%) None 4% (1%,4%) Other 4% (1%,4%) Q37: Which of the following services were offered to you by your treatment centre? Base : Australia 2012 (232)

183 QUALITY OF LIFE: Services Offered by Treatment Centre Which of the following services were offered to you by your treatment centre? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Social worker 18% (0%,1%,4%,5%,3%) Referral to external support provider 20% (0%,1%,4%,7%,2%) Dietician/nutritionist 17% (0%,0%,3%,4%,3%) Counsellor/psychologist 16% (0%,1%,4%,5%,2%) Chaplain 5% (0%,0%,1%,2%,0%) Physical therapy 5% (0%,0%,0%,1%,1%) Pain management 7% (0%,0%,1%,2%,1%) Complementary therapist 3% (0%,0%,0%,1%,0%) None 6% (0%,0%,1%,0%,1%) Other 4% (0%,0%,1%,2%,0%) Q37: Which of the following services were offered to you by your treatment centre? Base : Australia 2012 (232)

184 QUALITY OF LIFE: How Information was Obtained Who provided this information to you? Home Treatment Hospital Treatment Nurse 30% (1%,29%) Doctor 22% (1%,21%) Online research 9% (1%,8%) Friend 6% (1%,5%) Family member 8% (1%,6%) Another patient 3% (0%,3%) Patient support group 20% (1%,19%) Other 3% (1%,3%) Q38: Who provided this information to you? Base : Australia 2012 (173)

185 QUALITY OF LIFE: How Information was Obtained Who provided this information to you? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Nurse 30% (1%,1%,8%,9%,3%) Doctor 23% (0%,1%,5%,6%,2%) Online research 9% (1%,1%,3%,2%,1%) Friend 6% (0%,1%,1%,2%,1%) Family member 8% (0%,1%,3%,2%,1%) Another patient 3% (0%,0%,0%,1%,0%) Patient support group 20% (0%,1%,3%,6%,2%) Other 3% (0%,0%,1%,1%,1%) Q38: Who provided this information to you? Base : Australia 2012 (173)

186 QUALITY OF LIFE: Helpfulness of Support Group Indicate how helpful the patient support group was for information and support? Home Treatment Hospital Treatment Very helpful 28% (1%,27%) Helpful 27% (0%,27%) Uncertain 4% (1%,2%) Somewhat helpful 8% (0%,8%) Not helpful at all 2% (0%,2%) Did not use one 31% (4%,28%) Q39: Indicate how helpful the patient support group was for information and support? Base : Australia 2012 (98)

187 QUALITY OF LIFE: Helpfulness of Support Group Indicate how helpful the patient support group was for information and support? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Very helpful 27% (0%,1%,6%,5%,2%) Helpful 30% (1%,0%,5%,10%,4%) Uncertain 4% (0%,0%,1%,0%,1%) Somewhat helpful 7% (0%,0%,4%,2%,0%) Not helpful at all 2% (0%,0%,1%,1%,0%) Did not use one 31% (1%,1%,6%,4%,7%) Q39: Indicate how helpful the patient support group was for information and support? Base : Australia 2012 (98)

188 QUALITY OF LIFE: Suggestions for Support Group How could they have been more helpful? CLL/SLL DLBCL Follicular Hodgkin T-Cell Other Answered the phone/not voice mail 2% (0%,0%,1%,0%,0%) Medical person to answer questions 15% (0%,0%,4%,2%,1%) Had financial support 6% (0%,0%,1%,2%,1%) Had a 24 hour support line 4% (0%,0%,1%,1%,1%) Improved website 5% (0%,0%,1%,1%,1%) More online presentations 4% (0%,0%,2%,1%,0%) Better materials 1% (0%,0%,0%,1%,0%) Better materials on my lymphoma 13% (0%,0%,3%,2%,2%) Clinical Trial information 11% (0%,1%,3%,1%,1%) Someone to visit me at home 9% (0%,1%,2%,3%,1%) Someone to visit me in treatment 10% (0%,0%,2%,4%,1%) Had a support group 5% (0%,0%,1%,2%,0%) Had an online support group 3% (0%,0%,1%,0%,0%) Other 14% (1%,0%,3%,4%,1%) Q40: How could they have been more helpful? Base : Australia 2012 (144)

189

190 CONCLUSION It would appear that although awareness of these cancers has increased, misdiagnosis remains the same around the world. It is cri:cal to educate the Prac::oners and General Oncologists about lymphoma to reduce this threat to pa:ents. Secondly, there is a place for pa:ent support organiza:ons to work alongside the healthcare community at the :me of diagnosis to assist in educa:on and all aspects of journey support. A formal and delicate structured process is required for this to take place. Thank you to all the pa:ents who par:cipated and shared their journey with us.