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Hill & Knowlton Caregiver Results PROJECT 81631_017 FEBRUARY, 2011.

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Presentation on theme: "Hill & Knowlton Caregiver Results PROJECT 81631_017 FEBRUARY, 2011."— Presentation transcript:

1 Hill & Knowlton Caregiver Results PROJECT 81631_017 FEBRUARY, 2011

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3 Contact Information Lisa Covens Associate Vice-President Julie Thurgood Project Manager Patrick Ryan Senior Research Analyst

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6 6 INSTRUMENT  The survey was completed on-line from February 4th to February 17th, 2011, using specialized cancer patient panel.  A sample of 319 Canadians, 18 years of age or older, were surveyed. In order to qualify, these respondents needed to be taking care of someone with cancer.  A probability sample of the same size would yield a margin of error of ±5.5%, 19 times out of 20.  In order to boost the sample size answering five specific questions (i.e. Q14, Q22, Q32, Q33, and Q34), Leger Marketing fielded these questions a second time. An additional 79 caregivers answered these questions. QUALITY CONTROL  Stringent quality assurance measures allow Leger Marketing to achieve the high-quality standards set by the company. As a result, its methods of data collection and storage outperform the norms set by WAPOR (The World Association for Public Opinion Research). These measures are applied at every stage of the project: from data collection to processing, through to analysis. We aim to answer our clients’ needs with honesty, total confidentiality, and integrity.

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8 PROFILE  Half began caring for someone with cancer nearly six years ago (5.7).  Sixty-one per cent of those surveyed say their loved one has breast cancer, while 39% per cent say their loved one has prostate cancer.  Most (62%) indicate that their loved one has been diagnosed with non-metastatic cancer, though 27% have been diagnosed with metastatic cancer. COMPLICATIONS, RESOURCES, AND INFORMATION  Doctors counselled that loved ones might experience complications like fatigue, cancer than metastasizes, nausea, vomiting, and lymphedema, which is largely what those who experienced complications actually listed.  Most say the HCP – who was usually an oncologist -- directed their loved one to specific resources, such as an oncologist, patient brochures and/or support groups, a nurse, and/or internet research. When asked where their loved ones turned to for more information about their complications, the list is somewhat different (i.e. an oncologist; internet research; friends, family, and loved ones; patient brochures; and/or a nurse).  Most agree that their loved one had all the information he/she needed to understand the resulting complications of his/her cancer. Most are also satisfied with the amount of information they and their loved one received regarding bone health relative to cancer. Despite this, half indicate that they would have liked to learn more about (a) bone health and (b) their loved one’s bone health earlier in their loved one’s cancer journey. 8

9 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER  Six-in-ten are familiar with the term bone metastases. Four-in-ten say their loved one has been diagnosed with it. Those caring for someone with bone metastases  Most learned of the term bone metastases from an oncologist. This is likely due to the fact that roughly three quarters were included in their loved one’s discussions about treatment options.  Only forty-five per cent state that bone metastases treatment was discussed before their loved one’s cancer treatment, which is interesting, since most (72%) believe that this is when the discussion should take place.  About half are familiar with the term skeletal-related events.  The vast majority of caregivers was motivated to seek out more information on bone metastases and skeletal-related events. Those caring for someone without bone metastases  Most are concerned about their loved one experiencing bone metastases and/or skeletal-related events. Despite this, less than three-in-ten have voiced their concerns to their loved one’s doctor. 9

10 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

11 Q3. Did the doctor counsel that your loved one might experience any of the following complications? Base: All (n=319) DOCTORS COUNSELLED THAT LOVED ONES MIGHT EXPERIENCE COMPLICATIONS LIKE FATIGUE, CANCER THAT METASTASIZES, NAUSEA, AND VOMITING According to caregivers, six-in-ten doctors counselled that their loved one might experience fatigue (56%) and/or cancer that metastasizes (55%), while four-in-ten (42%) believed that their loved one might experience nausea and vomiting. Other possible complications included lymphedema (28%), osteoporosis (21%), and/or diet restrictions (16%). Demographically... Men are more likely to note that their loved one might experience lymphedema or osteoporosis, while women are more likely to note that no possible complications were mentioned. Those under 55 are more likely to note that their loved one might experience nausea, vomiting, or diet restrictions, while those 55+ are more likely to note that no possible complications were mentioned. Those concerned about their loved one experiencing bone metastases are more likely to state that their loved one might experience cancer that metastasizes. Those concerned about their loved suffering from skeletal-related events are more likely to state that their loved one might experience osteoporosis. 11

12 Q4. Did your loved one experience any complications related to his/her cancer? Base: All (n=319) Q5. What did he/she experience? Base: Those with loved ones who experienced complications (n=156) ABOUT HALF STATE THAT THEIR LOVED ONE EXPERIENCED COMPLICATIONS About half (47%) state that their loved one experienced complications, the most common being fatigue, nausea, vomiting, and cancer that metastasizes. Demographically... Ontarians are more likely to have a loved one who’s experienced complications (relative to those in the East). Men are more likely to state that their loved one experienced fatigue (relative to women), as are those concerned over their loved one experiencing bone metastases. Complications mentioned by one percent of the respondents or less are not shown. Q4 Q5 12

13 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

14 Q6. Did the healthcare provider direct your loved one to specific resources on the resulting complications of his/her cancer? Base: Those with loved ones who experienced complications (n=156) Q7. Which healthcare practitioner referred him/her to resources? Base: Those with loved ones directed to specific resources (n=98). MOST SAY THE HCP DIRECTED THEIR LOVED ONE TO SPECIFIC RESOURCES Most (62%) state that the HCP directed their loved one to specific resources on the resulting complications of his/her cancer. The HCP in question was usually an oncologist. Demographically... Those 55+ are more likely to have a loved one directed to specific resources. Q6 Q7 14

15 Q8. What did he/she refer your loved one to? Base: Those with loved ones directed to specific resources (n=98). HALF SAY THE HCP REFERRED THEIR LOVED ONE TO AN ONCOLOGIST About half (54%) state that the HCP referred their loved one to an oncologist. Others were referred to patient brochures and/or support groups (43% and 31%, respectively), and/or a nurse 31%). Demographically... Those making less than $40K per year were more likely to have been referred to patient brochures and/or friends, family, or loved ones (when compared to those making $0K+ per year). 15

16 Q9. What resources did your loved one actually refer to for more information about the resulting complications of his/her cancer? Base: Those with loved ones who experienced complications (n=156) LOVED ONES REFERRED TO AN ONCOLOGIST AND/OR INTERNET RESEARCH FOR MORE INFORMATION ABOUT THEIR COMPLICATIONS. When looking for information about their complications, caregivers believe that loved ones tended to refer to oncologists (54%) and internet research (46%) more frequently than anything else. Demographically... Those 55+ are more likely to state that their loved one referred to a GP (relative to those under 55 years of age). Those in the East are least likely to believe that their loved one referred to books. As income increases, the tendency believe that a one referred to medical journals steadily increases. 16

17 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

18 Q10a. To what extent do you agree that you and your loved one had all the information needed to understand the resulting complications of his/her cancer? Base: Those with loved ones who experienced complications (n=156) 73% AGREE THAT THEIR LOVED ONE HAD ALL THE INFORMATION HE/SHE NEEDED TO UNDERSTAND THE RESULTING COMPLICATIONS OF HIS/HER CANCER Most (73%) agree that their loved one had all the information he/she needed in order to understand the resulting complications of his/her cancer. This is especially true among those included in their loved one’s treatment discussions for bone metastases (vs. who were not). 18 AGREE: 73% DISAGREE: 24%

19 Q10b. What information was missing? Base: Those who disagree that they and their loved one had all the information needed (n=39) TWO-IN-TEN NEEDED MORE INFORMATION ABOUT TREATMENT SIDE EFFECTS Those who disagree that they and their loved one had all the information they needed to understand the resulting complications, wanted more information on (a) possible treatment side effects, and (b) how to care for a person after treatment, among other things. 19

20 Q11. How satisfied are you with the amount of information you have received regarding bone health relative to cancer? Base: All (n=319) MOST ARE SATISFIED WITH THE AMOUNT OF INFORMATION THEY RECEIVED REGARDING BONE HEALTH RELATIVE TO CANCER Six-in-ten (63%) are satisfied with the amount of information they received regarding bone health relative to cancer. particularly: those in the East and West (vs. Ontario), men, those included in treatment discussions with their with their loved one, and those who have spoken to their doctor about their concern over their loved one experiencing bone metastases and/or suffering from a skeletal-related event. 20 UNSATISFIED: 21% SATISFIED: 63%

21 Q12. Would you have liked to learn more about bone health earlier in your loved one's cancer journey? Base: All (n=319) HALF WOULD HAVE LIKED TO HAVE LEARNED MORE ABOUT BONE HEALTH PRIOR TO THEIR LOVED ONE’S CANCER JOURNEY Half would have liked to have learned more about bone health earlier in their loved one’s cancer journey, especially those: not satisfied with the amount of information they and their loved one received regarding their bone health relative to their cancer, concerned about their loved one experiencing bone metastases, and those concerned about their loved one suffering skeletal-related events. 21

22 Q38. Other than your loved one's physician and healthcare team, where else do you get information on bone health? Base: All (n=319) MOST USE THE INTERNET AS A WAY TO GET ADDITIONAL INFORMATION ON BONE HEALTH Other than their loved one’s physician and healthcare team, most (62%) get information on bone health from the Internet, especially those under 55 years of age and those concerned about their loved one experiencing bone metastases. As education and income increase, the tendency to use the Internet as an additional source of information steadily increases. Other sources include patient brochures; friends, family, and loved ones; medical journals; magazines; and books. 22

23 Q39. How satisfied are you with the amount of information you and your loved one have received regarding their bone health relative to their cancer? Base: All (n=319) SEVEN-IN-TEN ARE SATISFIED WITH THE AMOUNT OF INFORMATION THEY AND THEIR LOVED ONE RECEIVED REGARDING THEIR BONE HEALTH RELATIVE TO THEIR CANCER Most (68%) are satisfied with the amount of information they and their loved one received regarding their bone health relative to their cancer. Those more likely to be satisfied include men and those making more than $40K per year. 23 SATISFIED: 68% SATISFIED: 21%

24 Q40. Would you have liked to learn more about your loved one's bone health earlier in their cancer journey? Base: All (n=319) ABOUT HALF WOULD HAVE LIKED TO LEARN MORE ABOUT THEIR LOVED ONE’S BONE HEALTH EARLIER IN THEIR CANCER JOURNEY About half (53%) would have liked to learn more about their loved one’s bone health earlier in their cancer journey, especially those concerned about their loved one (a) experiencing bone metastases or (b) suffering from skeletal- related events. 24

25 Q41. From what other source(s) would you like to learn more about your loved one's cancer and its treatment options? Base: Those who would have liked to learn more about their loved one’s bone health earlier (n=172) ONE-IN-TEN WOULD LIKE TO LEARN MORE FROM THEIR DOCTOR / FAMILY DOCTOR When those who would have liked to learn more about their loved one’s bone health earlier were asked to provide sources from which they’d like to learn more, most (60%) could not provide an answer. One-in-ten, however, noted that they’d like to learn more from their doctor / family doctor. 25

26 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

27 Q1. How long ago did you start caring for someone with cancer? Base: All (n=319) HALF BEGAN CARING FOR SOMEONE LESS THAN FIVE YEARS AGO MEAN # OF YEARS:

28 Q2. What kind of cancer does your loved one have? Base: All (n=319) 61% SAY THEIR LOVED ONE HAS BREAST CANCER 28

29 Q13. Is your loved one's prostate / breast cancer non-metastatic or metastatic? Base: All (n=319) MOST LOVED ONES HAVE BEEN DIAGNOSED WITH NON-METASTATIC CANCER Most loved ones (62%) have been diagnosed with non-metastatic prostate or breast cancer. 29

30 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

31 Q15. Has your loved one been diagnosed with bone metastases? Base: Those with loved ones who have METASTATIC cancer (n=85) FOUR-IN-TEN LOVED ONES HAVE BEEN DIAGNOSED WITH BONE METASTASES Four-in-ten respondents indicate that their loved one has been diagnosed with bone metastases. 31

32 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

33 Q16. Where did you learn about bone metastases? (TOTAL MENTIONS) Base: Those diagnosed with BONE METASTASES (n=36) MOST LEARNED ABOUT BONE METASTASES FROM AN ONCOLOGIST Most respondents (61%) learned about bone metastases from an oncologist. Other sources include the Internet, nurses, patient brochures, GPs, books, medical journals, and urologists. 33

34 Q17. Did your loved one's healthcare provider include you in discussions about options for treating his/her bone metastases or for keeping them from getting worse? Base: Those diagnosed with BONE METASTASES (n=36) MOST STATE THEY WERE INCLUDED IN THEIR LOVED ONE’S DISCUSSIONS ABOUT TREATMENT OPTIONS FOR BONE METASTASES Seventy-three per cent indicate that they were included in their loved one’s discussions about treatment options for bone metastases. When asked who initiated this discussion, most state that it was the oncologist. 34

35 Q19. Did your loved one experience any particular symptoms of bone-related complications that led them to see a doctor? Base: Those diagnosed with BONE METASTASES (n=36) BONE PAIN OR JOINT ACHES WERE COMMON EXPERIENCES Most (68%) indicate that their loved one experienced bone pain or joint aches, while nearly two-in-ten (17%) experienced a fracture. 35

36 Q20. When in your loved one's cancer treatment for metastatic breast cancer was bone metastases treatment discussed? Q21. When, in your opinion, would have been the ideal time to have had that discussion? Bases: Those diagnosed with BONE METASTASES (n=36) FOR NEARLY HALF, BONE METASTASES TREATMENT WAS DISCUSSED BEFORE A LOVED ONE’S CANCER TREATMENT Forty-five per cent state that bone metastases treatment was discussed before their loved one’s cancer treatment. Most (72%) believe this is exactly when the discussion should take place. 36 Q20 Q21

37 Q29. Please indicate if your loved one was given any of the following treatments. Base: Those diagnosed with BONE METASTASES (n=36) MOST INDICATE THAT THEIR LOVED ONE UNDERWENT RADIATION Most (65%) indicate that their loved one underwent radiation, while about half (49%) were given some form of medication, such as zoledronic acid (21%) or Pamidronate (8%). Among those who took a medication (n=18), many noted an improved ability to perform daily activities and bone pain relief. Those who took zoledronic acid or Pamidronate (n=11) noted several impacts / side effects of the IV infusion, such as additional office visits, a reaction to the infusion that required treatment, or a side effect of the medication. 37

38 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

39 Q35. Have you spoken to your loved one's doctor about your concerns? Base: Those NOT diagnosed with BONE METASTASES (n=49) THOUGH MOST ARE CONCERNED ABOUT THEIR LOVED ONE EXPERIENCING BONE METASTASES OR SUFFERING FROM SKELETAL-RELATED EVENTS, ONLY 28% HAVE EXPRESSED THEIR CONCERNS Only 28% have spoken to their doctor about their concerns. When these respondents (n=14) were asked about who initiated the dialogue, an oncologist or themselves were the most frequently mentioned answers. These respondents listed a variety of motivators for this conversation, such as disease progression, personal concerns, and internet searches. 39

40 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

41 Q14. How familiar are you with the term bone metastases? Bases: All (n=164), Metastatic respondents (n=85), non-metastatic respondents (n=79) SIX-IN-TEN ARE FAMILIAR WITH THE TERM “BONE METASTASES” Six-in-ten caregivers are familiar with the term bone metastases, especially those familiar with the term skeletal-related events. There are no significant differences between those caring for someone with metastatic vs. non-metastatic cancer. 41

42 Q22. How familiar are you with the term skeletal-related events? Bases: All (n=115), Metastatic respondents (n=36), non-metastatic respondents (n=79) ROUGHLY HALF ARE FAMILIAR WITH THE TERM “SKELETAL-RELATED EVENTS” Almost half (49%) are familiar with the term skeletal–related events, especially those familiar with the term bone metastases. There are no significant differences between those caring for someone with metastatic vs. non-metastatic cancer. 42

43 Q33. How concerned are you about your loved one experiencing bone metastases? Bases: Those familiar with the term bone metastases (n=115), Metastatic respondents (n=49), non-metastatic respondents (n=66) MOST ARE CONCERNED ABOUT THEIR LOVED ONE EXPERIENCING BONE METASTASES Most (73%) are concerned about their loved one experiencing bone metastases. There are no significant differences between those caring for someone with metastatic vs. non-metastatic cancer. 43

44 Q34. How concerned are you about your loved one suffering skeletal-related events? Bases: Those familiar with the term skeletal-related events (n=110), Metastatic respondents (n=49), non-metastatic respondents (n=61) SIX-IN-TEN ARE CONCERNED ABOUT THEIR LOVED ONE SUFFERING FROM SKELETAL-RELATED EVENTS Six-in-ten (66%) are concerned about their loved one suffering from skeletal-related events. There are no significant differences between those caring for someone with metastatic vs. non-metastatic cancer.. 44

45 Q32. As a caregiver, how motivated were/are you to seek more information about bone metastases and skeletal-related events? Bases: All (n=115), Metastatic respondents (n=36), non-metastatic respondents (n=79) THE VAST MAJORITY OF CAREGIVERS WAS MOTIVATED TO SEEK OUT MORE INFORMATION ON BONE METASTASES AND SKELETAL-RELATED EVENTS Nearly eight-in-ten caregivers (78%) state that they are/were motivated to seek out more information on bone metastases and skeletal- related events. There are no significant differences between those caring for someone with metastatic vs. non-metastatic cancer. 45

46 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

47 Q43. Any additional thoughts or comments for consideration? Base: All (n=319) TOTAL The medical professionals involved in treatment were excellent4% Bone health has not been a priority/ I did not know bone health was associated with cancer2% Since treatment, loved one has been cancer free/ Treatment is effective2% We remain frustrated with the quality of care being provided to our loved one1% The medical process should be streamlined between the different doctors associated with the treatment of cancer1% Cancer is a horrible disease/ Cancer is frightening1% All information pertaining to cancer should be discussed at the time of diagnosis1% The loved one in question is now dead1% We do not know how to ask the right questions0% More information is needed in respect to cancer and cancer related illnesses0% Other3% No80% I'm not sure/ I'd prefer not to answer5% 47 MOST (80%) HAD NO ADDITIONAL COMMENTS

48 1 COMPLICATIONS, RESOURCES, AND INFORMATION Complications Resources Information 2 PROFILING THE LOVED ONE 3 CAREGIVERS HELPING THOSE WITH METASTATIC CANCER Those caring for someone with bone metastases Those caring for someone without bone metastases 4 METASTATIC AND NON-METASTATIC PATIENTS 5 ADDITIONAL COMMENTS 6 DEMOGRAPHICS

49 PROVINCETOTAL British Columbia13% Alberta10% Saskatchewan4% Manitoba3% Ontario38% Quebec24% New Brunswick2% Nova Scotia3% Prince Edward Island1% Newfoundland and Labrador2% 49

50 TOTAL GENDER Male50% Female50% I'd prefer not to answer0% AGE years of age2% years of age6% years of age12% years of age20% years of age29% years of age27% 75 years of age or older5% I'd prefer not to answer0% 50

51 EDUCATIONTOTAL Elementary1% High School, general or professional18% College pre-university, technical training, certificate (CEP32% University certificates and diplomas11% University Bachelor (BA)23% University Masters (MA)13% University Doctorate (PhD)3% I'd prefer not to answer0% 51

52 TOTAL EMPLOYMENT Working full-time39% Working part-time9% Self-employed or own your business6% Homemaker5% Unemployed3% Retired37% I'd prefer not to answer1% HOUSEHOLD INCOME $19,999 or less3% Between $20,000 and $39,9998% Between $40,000 and $59,99918% Bbetween $60,000 and $79,99919% Between $80,000 and $99,99914% $100,000 or more18% I'd prefer not to answer20% 52

53 TOTAL MARITAL STATUS Single11% Married or living together78% Widowed3% Separated1% Divorced4% I'd prefer not to answer2% HOUSEHOLD COMPOSITION I have children under the age of 18 living with me14% I have children 18 or older living with me11% I have children both under the age of 18 and 18 or older living with me3% I don't have any children living with me71% I'd prefer not to answer2% 53

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