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2016 LYMPHOMA GLOBAL PATIENT SURVEY -AUSTRALIA- Prepared for: Lymphoma Coalition May, 2016
2016 LYMPHOMA GLOBAL PATIENT SURVEY -AUSTRALIA-
Prepared for:
Lymphoma Coalition May, 2016
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INTRODUCTION In early 2008, Lymphoma Coalition (LC) launched its first Global Patient Survey to its member organisations. In 2012 a benchmarking component was added so that trends in key patient indicators such as barriers to treatment and quality of life could be monitored bi-annually on a global basis1 in addition to gathering information about more timely topics. Perception Insight (PI)2, a Canadian firm specialising in global market research has assisted LC with all phases of this study from survey design to data collection and analysis. They prepare reports for those countries exceeding 100 respondents, as well as a Global Report, a roll up of all responses to present a worldwide picture. As an adjunct to the reports, PI also implements its proprietary technology to produce cross-tabulated charts for those countries in excess of 30 respondents.
LC’s Global Patient survey continued in 2014 with the preparation and distribution of surveys in 13 languages to their 59 patient organisations, resulting in nearly 3,500 respondents from 69 countries around the world. Information from the 2014 survey has been used over the past two years to create reports both by country and by subtype to depict issues of the patient experience. From this information, member organisations have been able to create more targeted support services both locally and at the global level. For example, in 2015 the Hodgkin lymphoma mobile support app was developed to help improve the quality of life of Hodgkin lymphoma patients by providing them with a resource for improved access to patient support, tailored by age, gender and stage of the patient journey. Since 2014, LC has worked has also worked to bring attention to and help determine the best means of managing and supporting fatigue, the number one psychosocial issue of lymphoma patients worldwide as identified by the 2014 survey. As the patient representative in the Global Fatigue Consortium, LC hopes to along with other researchers, medical practitioners, therapists and social workers find the best means of assisting patients with this very difficult patient experience. The 2016 Global Patient Survey was distributed to patients with lymphoma and their caregivers in 15 languages this time through 66 of LC’s patient organisations, social media, the Lymphoma Hub, scientific partners, INTERLYMPH, and the healthcare community. Response rates have increased
1 Bi-annual comparisons are not being made by country due to significant demographic differences between sample respondents year to year, however, the sample size is deemed to be large enough to make such a comparison on a global basis. 2 https//www.perceptioninsight.ca
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since 2014 to 4,129 respondents, confirming the importance of this information which has already demonstrated its ability to act as a powerful agent of change.
Context for the 2016 Survey Although therapies have provided better remissions for patients, there has been increasing concern that psychosocial and physical issues as well as medical conditions may have a more negative impact on a patient’s experience during a prolonged patient journey. If this is indeed the case, the following questions are raised:
o Is there in fact an increased need for healthcare professionals and patients to better understand the negative consequences of treatment and adverse-effect management?
o Are relapsed patients more susceptible to health issues? Do they understand the consequences of more therapy in the context of any medical issues resulting from previous therapies?
o Might there be a role for LC to assist with the education of adverse-effect management or begin a discussion on what is tolerable or not for patients based on the patient perspective?
With this in mind, the over-riding goal of the 2016 Global Patient Survey is to gather information that will assist LC and its members to begin to understand the patient experience, through examination of the following issues: A. At the start of their journey, to what degree have patients been made
aware of and had an understanding of their diagnosis, subtype, treatment options and adverse-effect management? Of those who did not have an understanding, who are they?
B. How are patients being affected by treatment? What specific physical and psychosocial conditions, and medical issues have patients been living with, and at what stage of their experience? Are relapsed patients more susceptible to issues?
C. Who is most affected by lifestyle and independence issues? Does discrimination tend to be an issue?
D. Have healthcare professionals been effective in providing patients with support? Which patients are not reaching out for help?
E. What role have various support services and healthcare professionals played during the patient journey? What have been the patient’s primary sources for information and support? Moving forward, in which types of support services would patients be most interested?
F. Specifically who is experiencing barriers to receiving adequate lymphoma treatment?
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Through answers to these questions survey results will help provide an accurate picture of the global patient experience. By sharing this information with healthcare professionals, government and the public, LC and its members will be 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 organisations can be better equipped to serve the needs of the local community
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SURVEY RESULTS3 I. Demographics
Total response rate:
A total of 4,154 individuals answered this year’s Global Patient Survey, including respondents from 72 countries around the world. Respondent Demographic Profile:
Australia had 179 respondents, or 4% of the global total.
96% (versus 91% globally) of respondents said they had never participated in the Global Patient Survey, while of the 4% who said they had (versus 9% globally):
o 100% had done so in 2014 (versus 80% globally), o 14% in 2012 (versus 35% globally), and o 0% in 2010 (versus 17% globally).
73% (versus 92% in 2014 and 81% globally) of those responding to the survey were lymphoma patients while the remaining 27% defined themselves as either a caregiver, family member or friend to the patient (versus 8% in 2014 and 19% globally).
41% were males, and 59% were females.
Survey respondents had the following age profile: o 18-29 (12% versus 7% in 2014), o 30-45 (21%), o 46-65 (49% versus 42% globally), and o 65+ (18% versus 26% in 2014 and 27% globally).
And the following types of lymphoma4: o Follicular (24% versus 19% globally), o Hodgkin (21%), o DLBCL5 (11%), o Waldenstrom’s Macroglobulinemia (10%), o CLL/SLL (7%), o Other Aggressive NHL (6%), o Cutaneous lymphomas (5%), o Other Indolent NHL (5%),
3 Should 2016 data differ significantly (at least + or - 5%) from either 2014 or from global results, then those results will be reported in brackets. Otherwise, it can be assumed that 2016 data does not differ significantly from either 2014 or from global results. 4 Due to insufficient sample sizes, data is not available for certain analyses for the following sub-types: Burkitt’s, CLL/SLL, DLBCL GBC, DLBCL ABC, MALT/Marginal Zone, Mantle Cell, Cutaneous lymphomas, Peripheral T-Cell, Transformed, Waldenstrom’s Macroglobulinemia, Other Aggressive NHL & Other Indolent NHL. 5 The DLBCL category included DLBCL ABC and DLBCL GBC in 2014
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o Peripheral T-Cell (3%), o Mantle Cell (2%), o Burkitt’s (2%), o MALT/Marginal Zone (2%), o Transformed (0%), and o DLBCL GCB (0% versus N/A in 2014), o DLBCL ABC (0% versus N/A in 2014).
Respondents reported that patients had been diagnosed: o Prior to 1995 (1%), o 1996-2002 (6%), o 2003-2009 (15% versus 26% globally), and o 2010-2016 (78% versus 65% globally).
And were in the following stages of their patient journey6: o 44% were in remission (versus 58% in 2014 and 50% globally), o 27% were in the diagnosis stage, o 11% had relapsed, o 12% had finished treatment and were in maintenance therapy (versus N/A
in 2014), and o 7% Other.
6 ‘Has finished treatment and is in maintenance therapy’ was not asked in 2014
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II. Awareness & Understanding Lymphoma Coalition, its members and the healthcare community in Australia have the opportunity to play a more active role in the education and support of newly diagnosed lymphoma patients to help improve their overall quality of life by empowering them with a solid and comprehensive understanding of their diagnosis and treatment. Although there appears to have been a good understanding amongst newly diagnosed lymphoma patients of their diagnosis after their initial visit to the doctor, patients have come away with a very poor understanding of their subtype’s characteristics. The vast majority of those lacking understanding about their diagnosis have been middle aged or older. Global survey results show that there is an important opportunity for Australia to improve upon the understanding it provides its new lymphoma patients about their expected treatment experience. While some patients may have an understanding about treatment, there is significant opportunity to inform them further about treatment options, potential side effects and side effect management.
Even though 72% (versus 80% globally) of respondents said patients thought they had understood their diagnosis after their initial visit to the doctor, and 81% (versus 73% globally) said they had been made aware of their subtype, 40% (versus 57% globally) came away from that visit without an understanding of their subtype’s characteristics (versus 31% globally).
Of the 23% (versus 15% globally) who said they had not understood their diagnosis after their initial visit to the doctor:
o 54% were 46-65 yrs. (versus 44% globally), o 20% were 65+ yrs. (versus 27% globally), o 24% were 30-45 yrs., and o 2% were 18-29 yrs. (versus 8% globally)
12% (versus 17% globally) of all respondents said that patients had not been made aware of their subtype during their initial diagnosis.
This was also the case with: o 15% of those with DLBCL (versus 22% globally), o 12% with Follicular, and o 6% with Hodgkin7 (versus 16% globally).
7 Sample sizes were too small to report those with CLL/SLL, Burkitt’s, DLBCL GCB, DLBCL ABC, MALT/Marginal Zone, Mantle Cell,
Peripheral T-Cell, Waldenstrom’s Macroglobulinemia, Other Indolent NHL, Other Aggressive NHL, Cutaneous Lymphomas & Transformed
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After their initial visit to the doctor, although 85% had understood initial treatment if started right away, significantly fewer had understood:
o Side effect management (60%), o Potential side effects of treatment options (70%), and o Treatment options (72% versus 79% globally).
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III. Quality of Life As lymphoma patients now face prolonged experiences, there are important opportunities for LC to continue its work investigating the issues around fatigue especially with the Fatigue Consortium, as well as to begin a discussion about what is an acceptable side effect both short and long term. Through the development of side effect management plans and further examination of longer term medical issues resulting from treatment, there is also an opportunity for LC to help make a difference at the clinical trials development stage. Support is needed for those who have suffered changes in their lifestyle and independence, losses or reduction in their employment or difficulties in school, as a result of lay-offs, discrimination and/or generally unsupportive environments.
In 2016, physical and psychosocial conditions have continued to negatively impact patients, with fatigue and the fear of relapse as the pre-eminent issues, the most profound effect of the latter occurring after treatment. Although psychosocial impacts appear to ebb and flow depending on the patient experience, although none of those impacts appear to ever be fully negated. ‘Stresses related to finances’ for patients in Australia during treatment was the highest of any other country surveyed. Lymphoma patients in Australia have also been adversely affected by medical issues, numbness of the greatest concern. Virtually all patients have experienced lifestyle changes as a result of their lymphoma. About two thirds have experienced changes in independence, the majority of which have been middle aged or younger. Some discrimination would also appear to exist in the form of lay-offs or generally unsupportive environments either in the work place or in school.
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Physical Impacts8 In 2016, randomisation was added to the list of physical issues presented to
respondents during the survey to eliminate potential respondent error. Despite this change, results for the top physical issues most negatively affecting lymphoma patients in 2016 are relatively consistent with those of 2014.
For example, as can be seen in Table 1, respondents in Australia said that fatigue, hair loss, muscle weakness, and sleeplessness had most impacted patients since their diagnosis.
Table 1 Significant Differences between 2016 Australia and Global Results
for Physical Conditions9
PHYSICAL CONDITION % Affected
Global Australia Significant Differences
Fatigue 77% 77%
Hair loss 49% 52%
Muscle weakness 39% 44% -5%
Sleeplessness 35% 43% -8%
Changes in taste and smell 37% 43% -6%
Trouble concentrating 34% 38%
Memory loss 24% 38% -14%
Aching joints 34% 37%
Nausea and vomiting 34% 37%
Problems fighting infections 33% 36%
Weight loss 27% 34% -7%
Bowel changes 30% 32%
Skin reactions 25% 31% -6%
Loss of appetite 25% 31% -6%
Mucositis/mouth ulcers 26% 26%
Changes in sexual function 22% 26%
Weight gain 21% 23%
Itching 24% 22%
Cramps 19% 22%
Fluid retention 13% 21% -8%
Swelling of arms and legs 12% 15%
Other 9% 14% -5%
Loss of fertility 10% 12%
Incontinence 6% 8%
Burning 8% 7%
LEGEND Most negative
Most positive
8 In 2016, survey results were changed from ‘Impacted me a lot’ to ‘Impacted me’ (which in 2014 would have included ‘Impacted me somewhat’) 9 Values of 40% and higher and 15% and lower are considered to be significant and have been highlighted in red and green respectively. The text of any global outlier is enlarged and colour coded to indicate if it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier).
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Since their diagnosis, lymphoma patients in Australia have been among those in countries impacted the most by memory loss, skin reactions and other physical issues, and they have also reported a worse quality of life than have global patients specifically for:
o Muscle weakness, o Sleeplessness, o Changes in taste & smell, o Weight loss, o Loss of appetite, and o Fluid retention.
Psychosocial Impacts10
Randomisation was also added to this year’s list of psychosocial issues presented to respondents. Despite this change, 2016 results indicate that depression, changes in relationships, concerns about body image, and stress related to financial issues have still been major issues for lymphoma patients, just as they were in 2014.
As Table 2 below shows, of the 87% who indicated that patients had been affected by psychosocial impacts, the ‘fear of relapse11had been the primary issue affecting 66% of patients.
Patients in Australia have been impacted more than any other country surveyed by ‘concerns about body image’, and fared worse than the global average for:
o Depression, o Stress related to finances, o Loss/reduction in employment, o Loss of self-esteem, and o Isolation.
And been better off as compared to the global average for ‘difficulty working through the healthcare system’.
Table 2
10 In 2016, survey results were changed from ‘Impacted me a lot’ to ‘Impacted me’ (which in 2014 would have included ‘Impacted me somewhat’) 11 Fear of relapse was not asked in the 2014 survey
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Significant Differences between 2016 Australia and Global Results for Psychosocial Impacts12
PSYCHOSOCIAL IMPACT
% Affected
Global Australia Significant Differences
NOT AFFECTED BY ANY IMPACTS 17% 13%
Fear of relapse 63% 66%
Concerns about body image/physical appearance 33% 43% -10%
Depression 33% 41% -8%
Stress related to finances 24% 33% -9%
Changes in relationships 32% 31%
Loss/reduction in employment 22% 30% -8%
Loss of self-esteem 25% 30% -5%
Isolation 22% 28% -6%
Difficulty on the job or in school 19% 17%
Problems getting life or health insurance 15% 11%
Difficulty working through the healthcare system 13% 7% 6%
Other 6% 7%
LEGEND Most negative
Most positive
Effects of Treatment
Of those respondents who said patients had ‘understood their options’ and/or ‘potential side effects of treatment’, 98% said they had not chosen a different treatment plan than the one that had been suggested by their doctor.
Tables 3 & 4 below, show the extent to which psychosocial impacts have affected lymphoma patients throughout their treatment experience, and any significant differences that have occurred between the three phases of treatment.
As shown in Table 3 below, respondents said that patients had suffered much more significantly from every psychosocial impact during as opposed to before receiving treatment raising questions as to whether or not lymphoma patients are getting enough proactive psychosocial support during the treatment process.
Australian patients have also been suffering the most globally from stress related to finances during as opposed to before treatment.
12 All values varying 10% from the average of the column are highlighted in either red (+10%) or in green (-10%), with the exception of ‘Significant Differences’ where differences are highlighted if they ≤5% (red) or ≥5% (green). The text of any global outlier is enlarged and colour coded to indicate if it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier).
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Table 3 Significant Differences in Psychosocial Impacts Before & During Treatment13
PSYCHOSOCIAL IMPACT
% Affected
Before During Significant Differences
Stress related to finances 19% 91% -72%
Loss of self-esteem 20% 82% -62%
Changes in relationships 22% 76% -54%
Concerns about body image/physical appearance 24% 77% -53%
Difficulty on the job or in school 15% 65% -50%
Loss/reduction in employment 27% 75% -48%
Isolation 23% 70% -47%
Fear of relapse 12% 51% -39%
Depression 48% 63% -15%
Problems getting life or health insurance n/a n/a n/a
Difficulty working through the healthcare system n/a n/a n/a
LEGEND
Most negative
Most positive
Table 4 Significant Differences in Psychosocial Impacts During & After Treatment14
13 All values varying 10% from the average of the column are highlighted in either red (+10%) or in green (-10%), with the exception of ‘Significant Differences’ where differences are highlighted if they ≤5% (red) or ≥5% (green). The text of any global outlier is enlarged and colour coded to indicate if it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier). 14 All values varying 10% from the average of the column are highlighted in either red (+10%) or in green (-10%), with the exception of ‘Significant Differences’ where differences are highlighted if they ≤5% (red) or ≥5% (green). The text of any global outlier is enlarged and colour coded to indicate if it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier).
PSYCHOSOCIAL IMPACT
% Affected
During After Significant Differences
Fear of relapse 51% 88% -37%
Difficulty on the job or in school 65% 69%
Stress related to finances 91% 66% 25%
Loss/reduction in employment 75% 57% 18%
Loss of self-esteem 82% 67% 15%
Concerns about body image/physical appearance 77% 63% 14%
Isolation 70% 58% 12%
Changes in relationships 76% 67% 9%
Depression 63% 58% 5%
Problems getting life or health insurance n/a n/a n/a
Difficulty working through the healthcare system n/a n/a n/a
LEGEND
Most negative
Most positive
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As Table 4 indicates, after treatment: o The fear of relapse has become much more problematic with 88% having
experienced that fear after treatment, o Despite the fact that the remaining psychosocial conditions have had a
lesser impact after as opposed to during treatment, they have still been quite significant including :
Stress related to finances, Loss or reduction in employment, Loss of self-esteem, Concerns about body image, Isolation, Changes in relationships, and Depression.
According to survey results, 26% of respondents said that patient issues had lasted for 3-5 years after treatment, while:
o 28% said they had lasted for less than 1 year, o 15% for 1 year, o 17% for 2 years, o 9% for 6-8 years, and o 6% for 8+ years after treatment.
As shown in Table 5, only 37% of all respondents said patients in Australia had not been suffering from any medical issues in addition to their lymphoma.
Of the other 63% who reported having had additional issues to their lymphoma, numbness, eye sight issues, and issues with other organs were reported to be above the global average.
In fact, Australia is among those countries globally where patients suffer most from eye sight issues, and least globally from stomach related issues.
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Table 5
Medical Issues versus 2016 Australia and Global15
MEDICAL ISSUE
Total % Affected
Global Australia Significant Differences
NO MEDICAL ISSUES 35% 37%
Numbness 30% 39% -9%
Tingling 27% 30%
Other 27% 28%
Eye sight issues 20% 26% -6%
Issues with other organs 14% 20% -6%
Stomach related issues 24% 17% 7%
Diarrhea 13% 15%
Heart related issues 14% 11%
Secondary cancer 7% 7%
Diabetes 6% 6%
Any other blood condition 8% 6%
Osteoporosis 10% 6%
LEGEND
Most negative
Most positive
Changes in Lifestyle
As a result of their lymphoma, 100% of respondents said patients had experienced changes in their lifestyle.
Changes in Independence
Of the 64% of all respondents who said that patients have been experiencing changes in their independence as a result of their lymphoma:
o 21% said they had found it necessary to change their primary residence and move in with someone else,
o 43% had been middle aged or older, o 32% had been 30-45 yrs., and o 25% had been 18-29 yrs.
15 All values varying 10% from the average of the column are highlighted in either red (+10%) or in green (-10%), with the exception of ‘Significant Differences’ where differences are highlighted if they ≤5% (red) or ≥5% (green). The text of any global outlier is enlarged and colour coded to indicate that it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier).
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Hardship & Discrimination
Of the 33% of respondents who said patients had been affected by ‘stress related to financial issues’:
o 100% said they had been concerned at some point during their patient experience about their long term finances as a result of their lymphoma,
o 45% reported a loss of income on the part of patient caregivers, and o As many as 54% reported having been concerned about their ability to
access current treatments due to their financial situation.
Of the 30% of total respondents who said that patients had been affected by ‘loss/reduction in employment’ and/or the 17% who had been affected by ‘difficulty on the job or in school’, 18% said they had felt discriminated against at some point during their patient experience.
Of the 30% of total respondents who said patients had experienced a ‘loss/reduction in employment’:
o 24% said they had been laid off from their jobs directly as a result of their lymphoma, and
o 18% said their employers had generally been unsupportive throughout their experience.
IV. Reaching Out As increasing numbers of lymphoma patients live in remission or with a chronic cancer, they are increasingly reaching out to their healthcare community for help with their medical issues. As their story unfolds, it is becoming very apparent that there is a need for the healthcare community to step in to both educate and support patients about the physical and psychosocial consequences of their treatment in such a way that they can be most effectively treated over the long term. Considering the many challenges and struggles being faced by lymphoma patients, there is also a place for patient organisations to come alongside the healthcare community to better support patients. Although some patient support services have been highly valued by patients overall, there are others where this has not necessarily been the case. We see a shift in the way patients want to see their services delivered so it may be timely to re-evaluate services so organisations can make the most strategic and best use of resources.
Although the majority of patients in Australia have been reaching out to the healthcare profession for help with their physical and emotional issues, females
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have been less likely to do so. Patient requests to the healthcare profession for help with their issues have been met with only limited success. Patient organisations/support groups have been playing a very important role informing and supporting lymphoma patients in Australia, and it appears they have the opportunity in future to provide patients with more internet based services such as website links and downloadable materials. It is interesting to note that respondents are looking for information about treatment and subtype, particularly given the fact that survey results also show that although some patients in Australia may have an understanding about treatment, there is significant opportunity to inform them further about treatment options, potential side effects and side effect management.
Healthcare Professionals
The following proportions of respondents said that patients have been using the following as their primary sources of information throughout their patient experience:
o Doctors (82%), o Online resources (64%), o Nurses (36%), o Patient organisations (28%), o Family & friends (15%), and o Other (10%).
While 65% of respondents said that patients’ physical and emotional issues had been communicated to their doctors:
o 23% said they had been definitely helped by them, o 16% said they had not been helped, and o As many as 61% said their doctors had only been of ‘some’ help.
Females have been significantly less likely to communicate physical and emotional issues to their doctors than have male patients.
Patient Support Services
As Table 6 shows, patient organisations/support groups and pain management, social workers and physical therapy have been the most helpful support services to patients in Australia, while
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Counselor/psychologists, complementary therapists and spiritual support have been the least helpful.
Social workers in Australia have been the most helpful of any other country surveyed.
Other support services offered by Australia were found to be more helpful than the global average, including:
o Pain management, o Complementary therapists, o Physical therapy, and o Dietician/nutritionists.
Table 6 Significant Differences between 2016 Australia and Global Results for
Helpfulness of Patient Support Services16
PATIENT SUPPORT SERVICE
% Finding the Service Helpful
Global Australia Significant differences
Patient Organisation/ support group 77% 77%
Pain management 53% 67% 14%
Social worker 40% 65% 25%
Physical therapy 55% 65% 10%
Dietician/nutritionist 53% 62% 9%
Spiritual support 58% 57%
Complementary therapist 45% 56% 11%
Counselor/ psychologist 59% 56%
LEGEND
Most negative
Most positive
Of those respondents who said they had been provided with information about these patient support services, 58% said it had been provided by doctors followed by:
o Patient organisations/support groups17 (47%), o Online research (40%),
16 All values varying 10% from the average of the column are highlighted in either red (-10%) or in green (+10%), with the exception of ‘Significant Differences’ where differences are highlighted if they ≤5% (red) or ≥5% (green). The text of any global outlier is enlarged and colour coded to indicate that it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier). 17 In 2016, responses to ‘patient organisations’ also included ‘patient support groups’.
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o Nurses (38%), o Family members (12%), o Friends (11%), o Other patients (5%), and o Other (4%).
Additional Services
As shown in Table 7 below, the highest level of interest in potential services appears to include receiving a referral from a healthcare professional for website links, while the least interest was expressed in professional physical or emotional support.
This result is not surprising given previously cited survey results which indicate that there is an important opportunity to improve upon the understanding provided to Australian patients about their lymphoma and expected treatment experience.
Table 7 Interest in Potential Referrals from Healthcare Professionals
POTENTIAL SERVICE % of Respondents
Interested Not Interested
Professional physical support 40% 35%
Professional emotional support 39% 39%
Website links about lymphoma type & treatment suggestions
76% 14%
Patient organisation support 61% 22%
LEGEND
Most negative
Most positive
Similarly, as shown below in Table 8, the highest level of interest appears to include downloadable materials, treatment information, and nutrition/fitness information.
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Table 8
Interest in Patient Organisation Services
POTENTIAL SERVICE % of Respondents
Interested Not
Interested
Downloadable materials 83% 9%
Treatment information 82% 11%
Complementary nutrition/ fitness information 77% 14%
Clinical trial options information 71% 16%
Fatigue support 67% 17%
Hard copy material 65% 24%
Live educational sessions 53% 30%
If available, financial support 53% 30%
Online chat room and/or online patient support group 53% 32%
In person support group 44% 38%
Support navigating the insurance system 43% 40%
Phone line support 32% 46%
LEGEND
Most negative
Most positive
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V. Barriers to Treatment Financial issues have been the greatest challenge for those facing barriers to treatment in Australia. Females have been faced with significantly greater personal barriers such as ‘personal support’ and the ‘inability to give up a caregiver role’, while males have been significantly more affected by medical ones including for example ‘ availability of specialty physicians’ and ‘access to the most up to date treatment.’
As shown in Table 9 below, 58% of respondents said that patients had not been facing any barriers to treatment.
Of the remaining 42% of respondents who have been facing barriers, financial barriers and access to the most up to date treatment have been affecting them the most.
Patients in Australia have been among those globally suffering the most from these financial barriers to treatment, and the least of any other country surveyed for wait times to treatment.
In comparison to global averages, they have been worse off for having access to the most up to date treatment, and better off for having access to treatment centres.
Table 9 Barriers to Treatment18
BARRIERS TO TREATMENT % Affected
Global Australia Significant Differences
NOT AFFECTED BY ANY BARRIERS 54% 58%
Financial 28% 38% -10% Access to the most up to date treatment 23% 32% -9%
Specialty physician available locally 23% 25%
Personal support 27% 23%
Other 16% 18%
Inability to give up caregiver role 12% 15%
Access to treatment centre/prohibitive travel 18% 11% 7%
Wait time to treatment longer than necessary 22% 8% 14%
Language 2% 1%
LEGEND
Most negative Most positive
18 All values varying 10% from the average of the column are highlighted in either red (+10%) or in green (-10%), with the exception of ‘Significant Differences’ where differences are highlighted if they ≤5% (red) or ≥5% (green). The text of any global outlier is enlarged and colour coded to indicate that it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier).
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As can be seen in Table 10, there is no significant difference between males and female patients in Australia who have not been affected by any barriers to treatment.
Of those patients who have been facing barriers to treatment, females have been significantly more affected than males by:
o Lack of personal support, o Inability to give up their caregiver role, and by o ‘Other’ barriers, while
Male patients in Australia have been significantly more affected than females by: o The lack of locally available specialty physicians, and by o Having access to the most up to date treatment.
Table 10
Significant Differences between Males & Females for Barriers to Treatment19
19 ‘Significant Differences’ are reported if they are ≤5% or ≥5%.The text of any global outlier is enlarged and colour coded to indicate that it is positive or negative (e.g. Red/ white text=Negative global outlier, Green /white text= Positive outlier).
BARRIERS TO TREATMENT
% Affected
Males Females Significant Differences
NOT AFFECTED BY ANY BARRIERS 58% 58%
Specialty physician available locally 37% 16% 21%
Access to the most up to date treatment 43% 23% 20%
Financial 40% 37%
Access to treatment centre/prohibitive travel 13% 9%
Language 3% 0%
Wait time to treatment longer than necessary 7% 9%
Personal support 13% 30% -17%
Inability to give up caregiver role 7% 21% -14%
Other 10% 23% -13%
LEGEND
Most negative Most positive
