lupus: a survey among sle patients, physicians, and supporters · younger lupus patients struggle...

GfK Custom Research North America Lupus: SLE Patients, Supporters and Physicians October 2011

© Copyright GfK Custom Research North America 2011. Proprietary and Confidential

Lupus: A Survey Among SLE Patients, Physicians, and Supporters

2



Table of Contents

1 About the Survey

Key Findings

Detailed Findings • Health & Well-Being • Relationship With Doctors • Relationship With Family/Friends • Career • Quality of Life • Demographics • Appendix

2

3

3



About the Survey 1

4



About This Survey

GfK Roper Public Affairs & Corporate Communications conducted a survey among patients with systemic lupus erythematosus (SLE), as well as supporters who care for patients with SLE, and rheumatologists who treat patients with SLE, to provide insights about patients’ experiences with the condition. The specific goals of this survey were to:

• Understand the perceived health and overall well-being of patients • Assess the effect lupus has had on the relationships of patients and the supporters who

care for them • Evaluate the effect lupus has had on patients’ careers • Understand where gaps in communication and understanding exist between patients

and the supporters and doctors who care for them

The survey was conducted from July through September 2011. It involved 502 people who self reported that they had received a diagnosis of lupus, 204 supporters of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus). The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.

5



About This Survey (continued)

The patient and supporter portion of the survey was conducted online from July 28 to August 26, 2011. Sample was provided by online panels of Americans who have previously agreed to participate in surveys and self-identified themselves as SLE sufferers/caregivers. Several panels were used in order to better represent the target audience within the public at large and to collect a sufficient number of patient and caregiver respondents. In total, 502 patients and 204 supporters participated. The physician survey was conducted via telephone from July 28 to September 9, 2011. The sampling frame for the surveyed rheumatologists was the American Medical Association Directory, screened for those who presently diagnose and treat SLE patients. A national sample of rheumatologists was drawn on a random basis from this frame. In total, 251 rheumatologists participated in this survey.

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Key Findings 2

7



Patients Don’t Fully Express Their Worries About Lupus – Supporters do not necessarily recognize how far patients go to hide from the people who care for them how they truly feel about their lupus. Patients don’t disclose the degree to which: they worry about the long-term consequences of their lupus (51% say this describes themselves “very well”); minimize the pain/worry they experience (46%); feel limited by their lupus (43%); and are depressed about not being able to perform everyday activities (40%). Patients And Supporters Perceive The Doctor/Patient Relationship Slightly Differently – While half of patients “strongly agree” that they can talk freely with their doctors (51%), only one in three supporters say the same about patients (33%). Patients are also much more likely than supporters to “strongly agree” that their physicians understand their symptoms (42% vs. 31%) and have the time and resources to address their lupus (41% vs. 35%).

Key Findings

8



Rheumatologists View Themselves As An Important Resource For Patients (87% strongly agree) Communication gaps about symptoms between doctors and patients – More than half of doctors believe that their patients are open and honest with them about their symptoms (53%). A majority of doctors disagree that patients minimize their symptoms when they talk about their lupus (72% strongly/somewhat disagree). Supporters Underestimate Symptoms – Arthritis/joint pain and fatigue are the problems about half of SLE patients surveyed struggle with on a daily basis (51% and 46%, respectively, say “everyday”). Supporters recognize these top symptoms, but they underestimate symptoms (19% and 22%, respectively, say arthritis/joint pain and fatigue affect patients “everyday”). When asked to rank which problems patients report most frequently, doctors rank fatigue (50%) ahead of arthritis (35%).

Key Findings

9



Assessments Of Patients’ Support Vary Greatly By Respondent Type – While half of patients say their family/friends are “very supportive” (52%), nearly 8 out of 10 supporters describe themselves as “very supportive” of friend/family members with lupus (78%). Doctors, interestingly, are least likely to perceive a patient’s family/friends as “very supportive” (34%). Lupus Puts Strain On Relationships – Patients and supporters are in agreement that having lupus puts a strain on their relationships. The degree of that strain is also similar. Seven out of 10 patients (68%) agree strongly/somewhat that “lupus affects virtually every relationship a patient has” and a similar number of supporters agree as well (74%). One noticeable difference between the two groups is the perceived degree to which patients with lupus maintain relationships with others who have the disease. Supporters are much more likely to agree that patients have such relationships (72% agree strongly/somewhat compared to 54% of patients).

Key Findings

10



Patients Feel Others Sometimes View Them Critically – Two-thirds or more patients “agree” that friends and family think patients can do more than they actually can (75%), think they can improve their condition by eating better (80%) and believe that they can identify with living with lupus (67%). The majority of patients also agree that their family and friends believe that lupus symptoms make patients unmotivated (67%) and that lupus has affected their reliability and dependability (59%). Lupus Impacts A Patient’s Career – A majority of patients, supporters and doctors report a change in patients’ career plans due to lupus. Two-thirds of patients report reducing the number of hours worked (67%), or quitting work/retiring earlier than planned (63%). Most doctors report that their patients often or sometimes have made the same changes (95% and 78%, respectively).

Key Findings

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More Resources For Lupus Desired By Patients And Especially Supporters –Both patients and supporters “agree” that they wish there were more resources available to help handle issues that patients with lupus face, but supporters seem more interested (58% “strongly agree,” compared to 48% among patients). Supporters, overall, take a more active role in seeking out others who have lupus (28% vs. 19% of patients). This desire for information could also be the reason that supporters are more likely to agree that there is a community already available where the lupus patients have a voice and can be heard (34% vs. 26%).

Key Findings

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Men Appear To Be Much More Negatively Impacted By Lupus Than Women – Men are significantly more likely than women to say “lupus makes them feel flawed as a person” (69% vs. 55%) and “nothing more can be done to help my condition” (60% vs. 46%). They also are more likely to agree they have had someone end a relationship with them specifically due to their lupus (55% vs. 24%), and they would still be married/in a serious relationship if it were not for lupus (55% vs. 38%). Interestingly, men are significantly more likely than women to have tried almost all of the coping mechanisms examined in the survey including yoga (55% vs. 40%) and joining a support group (58% vs. 32%). Younger Lupus Patients Struggle The Most With Negative Feelings Toward Lupus – Compared to their older counterparts, lupus patients aged 18 to 34 are more likely to say that they feel depressed, down or hopeless as a result of lupus (84% vs. 77% of those 25 to 54 and 65% of those 55+), that people living with lupus are ignored (64% vs. 56% and 48%), and that people with lupus keep to themselves and would rather be alone (60% vs. 57% and 46%). At the same time, they are most likely to feel their doctor is an advocate for them as well (80% vs. 73% and 69%).

Key Findings

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Despite Feeling Limited In Performing Many Everyday Activities, One In Four Patients Still Describe Themselves As Hopeful Or Optimistic – Twenty-four percent of patients who rate themselves as “extremely limited” or “very limited” to at least half of the examined items say they are hopeful or optimistic routinely or most of the time. Patients Feel Alone And Powerless And Minimize Symptoms So As Not To Upset Their Family – Half (49%) of patients who describe themselves as “feeling alone and powerless” also admit to minimizing the pain or worries they experience because they do not want to upset their families. This compares to only 5% of patients who also feel alone and powerless but don’t minimize their symptoms. Minimizing in order to not upset their family pervades both sub-groups, but is stronger among those who feel powerless.

Key Findings

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A Desire For More Resources Is Strong Among Those Who Feel Alone And Powerless – While a high number of patients across the board would like more resources, the desire is significantly greater among those who feel alone and powerless than among those who do not (49% vs. 38%).

Patients Who Feel Alone And Powerless Are Slightly More Likely To Agree They Can Talk Freely To Their Physician About Their Symptoms Than Those Who Don’t Have Such Feelings – More than 4 in 10 patients (43%) who say they feel alone and powerless agree (strongly/somewhat) that they can talk freely to their doctor about their lupus symptoms. This compares to 39% of patients who don’t describe themselves as feeling alone and powerless. This suggests that the doctor/patient relationship does not negatively affect the patient’s feelings.

A Perceived Lack Of Time And Resources By The Doctors Is Not Contributing To Feelings Of Being Alone And Powerless By The Patients – In fact, patients who describe themselves as being alone and powerless (38%) are equally as likely as those who do not (37%) to agree their physician has the time and resources to address their needs.

Key Findings

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Regardless Of Being Able To Talk Openly To Their Doctor, High Numbers Of Patients Seek More Resources – Seven out of ten patients (71%) who agree they can talk freely to their physician about their lupus symptoms also wish there were more resources available. This compares to only 16% who say they cannot talk freely to their doctor. Similarly, 65% of patients who would welcome more resources agree their physician does have the time and resources to address their needs. This suggests a communication gap between the doctor and the patient.

Key Findings

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Key Findings Equal Numbers Of Patients Seek Out More Resources Regardless Of Whether They Feel The Severity Of The Disease Or The Unpredictability Of The Symptoms Is The Most impactful On Their Life – Three in 10 patients (30%) who wish more resources were available feel the severity of the disease is the most impactful part of living with lupus. One in three (34%) who also seek out additional information feel it is the unpredictability of the symptoms that most impacts all aspects of their life, including home and career.

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Reader’s Notes

Percentages Not Totaling 100% • For tabulation purposes, percentage points are rounded to the nearest whole

number. As a result, the total percentage in a given table column may be slightly greater or less than 100%.

• All numbers shown on the charts are percentages unless otherwise noted.

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Reader’s Notes: Significance Testing

• Significance testing was performed at the 95% confidence level. • Statistically significant differences are shown in tables by column letters.

• Differences that are significant at the 95% confidence level are denoted by uppercase letters.

• Where significant differences occur, the letter that corresponds to the column of the smaller number is placed next to the larger of the two numbers. Example:

Means Total (A)

Segment 1

(B)

Segment 2

(C)

Segment 3

(D)

Segment 4

(E)

Segment 5

(F)

Attribute 1 4.2 F 4.3 4.1 4.5 A 4.2 3.9

Compared to all other segments in

total (column A), respondents in segment 3 are significantly more likely to agree with attribute 1.

Compared to segment 5 (column F), other segments (in total) place significantly higher importance on attribute 1.

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Detailed Findings 3



Health & Well-Being

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Health & Well Being – At A Glance

• Patients and supporters are “in tune” when it comes to evaluating the effect lupus has on patients’ everyday activities. They both admit that there are limitations when performing simple tasks such as getting dressed in the morning and going to the store to buy groceries, but interestingly, in many cases, supporters perceive the limitations to be greater than do the patients themselves. This is most notable when asked about how limited patients feel by driving, buying groceries, enjoying leisure activities and getting dressed. Doctors, on the other hand, report “routine” discussions between themselves and their patients more so when their patients feel “extremely limited” by something. Overall, however, doctors do observe that patients do report struggling with performing everyday activities.

• There is a certain “disconnect” between patients and supporters about the perceived degree to which patients

experience discomfort from their lupus. More patients report experiencing “fatigue,” “memory loss,” issues with “physical appearance,” “difficulty breathing,” “arthritis/joint pain,” “GI symptoms,” “anxiety,” “depression” and “other kinds of pain” everyday than supporters observing these in patients. Among doctors, the most recognized symptoms are fatigue and arthritis/joint pain.

• Despite the discomfort of lupus, patients seem determined to make the best of their life and are hopeful. They do

worry about the long-term health consequences and believe it places limitiations on their life, but they admit to downplaying their pain to protect their family. Supporters, in turn, see patients struggling to a lesser degree.

• Long-term health concerns are a frequent topic of conversation between doctors and patients, but what’s

interesting is how few doctors (only 2 in 10) say their patients “often report” minimizing their symptoms compared to nearly half of patients saying this statement describes them “very well.”

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Supporters Understand Limitations Imposed By Lupus – Supporters generally share patients’ views of the limitations lupus places on patients. When they differ, it is the supporters who feel that patients are “extremely” limited to a greater degree. The biggest disconnect seems to be in terms of driving and going to the store to buy groceries, but also is noted for getting dressed and enjoying leisure activities.

Patients Q1: Following is a list of everyday activities that people do. In your opinion, to what degree have you been limited doing each of these activities due to lupus over the past six months?

Supporters Q1: Following is a list of everyday activities that people do. In your opinion, to what degree has your friend or family member with lupus been limited in doing each of these activities due to lupus over the past six months?

Base: Patients (n=502); Supporters (n=204)

2 1 2 1 2 1 2 2 1 2 1 3 2 5 4 3 19 10 1 2 13 7

33 19 9

7 11 7

14 12

11 10 13 11

15 12

17

11 17 22 17 20

19 19 26 23

28 29 22

23

17

20 34 37 34 36

19 30 34 43

32 35 27 40

16 29

34 32 32 32 27 26 26 23 24 23 20 17 15 18

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Maintaining a regular exercise program

Extremely limited Limited Slightly limited Not at all limited Not applicable Don’t know

1 1 1 2 1 1 1 1 1 1 1 2 2 1 2 3 1 5 4 2 2 2 2 2 2 1 1 21 12

25 17 29

16 26 15 31 23

48 29 32 22

32 26

29 26

30

25 32

28

31 32

25

25 33

32

31 37

28 37

21 32

27 41

25 33 15

27 24

28

14 22 14 17 13 21 12 13 10 10 9 14 8 15

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Participating in recreational activities

Attending school/classes

Playing with or taking care of children Taking a walk

Doing housework such as vacuuming, dusting, or

making beds Going to work

Spending time with friends

Going to the store to buy groceries

Getting dressed in the morning

Enjoying leisure activities like reading a book or watching

a movie Spending time

with family Cooking Driving

B

A A

B

A

B

B

A

B

A

B

A

B

A

A

B

A

B B

B

A

A

A

A

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% saying “extremely limited/very limited”

Total Patients

Limited by 7 or more activities

but hopeful and

optimistic

Feel alone and powerless and

minimize symptoms so not to upset the

family

Feel alone and powerless and wish there were more

resources

Feel alone and

powerless and wish

there were more credible information

(A) (B) (C) (D) (E)

N=118 N=244 N=248 N=200 Participating in recreational activities 68 93A 75A 76A 72 Maintaining a regular exercise program 66 91A 75A 75A 75A Doing housework 59 88A 71A 70A 70A Taking a walk 56 95A 65A 64A 66A Playing with or taking care of children 48 80A 57A 57A 55A Going to work 47 75A 56A 56A 59A Going to the store to buy groceries 45 85A 57A 57A 59A Cooking 39 75A 52A 52A 55A Spending time with friends 42 81A 56A 56A 56A Driving 34 64A 47A 45A 51A Spending time with family 34 66A 50A 50A 48A Getting dressed in the morning 32 65A 43A 43A 44v Attending school/classes 30 62A 39A 39A 41A Enjoying leisure activities 24 43A 35A 35A 40A

Feeling Alone And Powerless Is Driven By Being Limited In Performing Activities That People Take For Granted – Patients who either feel alone and powerless, or minimize their symptoms, or wish there were more resources/credible information are all significantly more likely than the total sample to be limited in performing most activities.

Patients Q1: To what degree have you ben limited doing each of these activities due to lupus over the past six months? Base: Patients (n=502)

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Doctors Q1: In general, how often do your lupus patients report difficulty with the following activities due to lupus over the past six months?

Base: Doctors (n=251)

Routinely report Often report Rarely report Never report Don’t know

1 2 1 2 17

26 20

37

56 50 60

47

26 23 19 12

Maintaining a regular exercise program

Performing day-to-day functions such as getting dressed, cooking, doing

housework, going to the store Going to work Attending classes

or school

Doctors

Patients Talk To Doctors About Difficulties – Most doctors say that their patients do report difficulties related to lupus causing problems with performing everyday activities. Still, doctors say that most patients are not “routinely” reporting difficulties, but are rather “often” reporting them.

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Patients Q2: How often, if ever, would you say the following problems affect you? Supporters Q2: How often, if ever, is your friend or family member who has been diagnosed with lupus affected by the following problems? Doctors Q2: I am now going to read you common problems associated with lupus. I would like you to rank the top three problems starting with the

most common. Which one is second most common? Which is the third, most common problem reported by patients? Base: Patients (n=502); Supporters (n=204); Doctors (n=251) *=less than 0.5%

4 6 17 23 17 10 28 21

6 6 9 9 14 18

21 22 28

26

24 24

14 22 16 20 17

24 22

25 23 32 20 25

16 23 20

31 19

30 19

24 10 19 12 21

15

30 16

24 46 22 22

7 22 12 16 9

51 19

38 16

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

14 15 21 16 22 12 16 11 16 13

23 21

46 37

37 37 30

26 23 21

21 29

21 30 23 33

16 31 22 26

21 24

6 12 10 14

14 19

17 30 21 12 7 4 8 4

24 12 22 10

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Fatigue

50

35

8

3

2

1

Fatigue

Arthritis or joint pain

Physical appearance,such as skin rashes,…

Other kinds of pain

Memory loss or slowingof thinking

Depression

Difficulty breathing

GI Symptoms

Infection

Fever

Anxiety

Doctors

Memory loss or slowing of thinking

Physical appearance Difficulty breathing

Arthritis or joint pain Other kinds of pain

GI Symptoms Infection Fever Depression Anxiety

Every day Every week Several times a month Several times a year Never

*

*

*

*

-

Supporters Underestimate Symptoms – Arthritis/joint pain and fatigue are the problems most SLE patients struggle with on a daily basis. Supporters recognize these top symptoms, but overall they underestimate the degree to which they affect patients. Doctors, when asked to rank the top three most common problems associated with lupus, place fatigue ahead of arthritis, with physical appearance ranked third. Few doctors rank the other symptoms among the “most common.”

B

B B

B

B

B B

A

A

A

A

A

A

A

A

A

A

A

B

B

B

B B A

A A A

A

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Supporters’ Differing Assessments Of Patients’ Emotional Outlook – Supporters’ views of patients’ emotional state differ somewhat from the views of the patients themselves. While supporters recognize that patients feel frustrated, they are less likely to see it as a daily occurrence. Yet supporters are also more likely to perceive the patients as being depressed nearly every day/more than half the days than patients themselves. Patients, however, are more likely than supporters to report feeling hopeful or optimistic regardless of their lupus.

Patients Q3: How often in the past month, if ever, have you experienced the following feelings? Supporters Q3: How often in the past month, if ever, has your friend or family member with lupus been impacted by these feelings? Base: Patients (n=502); Supporters (n=204)

Feeling frustrated, but determined to make the best of

their life, in spite of lupus

8 9 12 14 24

15

27 36 32 33

41

40

26

31 26

36

17 31

39 24 30

17 18 14

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Nearly every day More than half the days Several days Never

Feeling hopeful or optimistic, regardless of lupus

Feeling down, depressed, or hopeless, as a result of lupus

A

B

A

A

B

B

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% saying “nearly everyday/”almost all the days”

Gender Age

Total Patients Men Women 18-34 35-54 55+

(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

Feeling frustrated but determined to make the best of my life, in spite of lupus 92 88 93K 92 93 90

Feeling hopeful or optimistic, regardless of lupus 88 88 88 87 90 87

Feeling down, depressed, or hopeless, as a result of lupus

76 81 74 84U 77U 65

While Women Are More Likely To Feel Frustration, Both Genders Are Equally Hopeful – Almost all women agree that despite feeling frustrated they are determined to make the best of their life in spite of lupus. They also admit feeling hopeful or optimistic nearly everyday or almost all days. Men, despite seeming to struggle more with some aspects of having lupus, also are optimistic most days. Younger lupus patients appear to be struggling most with the disease. A high number say they feel down, depressed or hopeless nearly every day or almost all days.

Patients Q3: How often in the past month, if ever, have you experienced the following feelings? Base: Patients (n=502)

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When First Diagnosed With Lupus (%)

Total Patients

Limited by 7 or more activities

but hopeful

and optimistic


minimize symptoms so

not to upset the family


wish there were more resources

Feel alone and

powerless and wish

there were more credible information

(A) (B) (C) (D) (E)

N=118 N=244 N=248 N=200

Feeling frustrated but determined to make the best of my life, in spite of lupus 92 97A 96A 96A 95A

Feeling hopeful or optimistic, regardless of lupus 88CD 100A 84 85 85

Feeling down, depressed, or hopeless, as a result of lupus 76 90A 92A 94A 93A

Frustration And Depression Are Higher Among Those Who Feel Alone And Powerless And Wish For More Information And Resources – Again, compared to total patients, those who say they feel alone/powerless or minimize their symptoms or wish for more resources/credible information are much more likely to feel down, depressed or hopeless. They are also more likely to be frustrated but determined to make the best of their situation.

Patients Q3: How often in the past month, if ever, have you experienced the following feelings? Base: Patients (n=502)

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Patients Q4: Have you ever done any of the following to help you cope with lupus? Supporters Q4: Has your friend or family member ever done any of the following to help cope with lupus? Doctors Q3: Do you recommend to patients that they do any of the following to cope with lupus? Base: Patients (n=502); Supporters (n=204); Doctors (n=251)

% Yes

72

66

50

48

43

39

36

28

25

69

56

46

48

35

45

45

44

33

Changed diet

Started or changed exercise regimen

Accessed online or in-person educationprograms

Participated in a religious or spiritual-focused activity

Tried meditating or yoga

Joined or attended a lupus support group

Consulted with a religious or spiritualadvisor

Participated in group counseling ortherapy sessions with other lupus patients

Tried acupuncture Patients (A)

Supporters (B)

94

81

80

65

64

59

36

20

19

Started or changed exerciseregimen

Joined or attended a lupussupport group

Accessed online or in-personeducation programs

Tried meditating or yoga

Participated in group counselingor therapy sessions with other…

Changed diet

Tried acupuncture

Consulted with a religious orspiritual advisor

Participated in a religious orspiritual-focused activity Doctors (C)

% Yes

Patients’ Coping Strategies Differ From Doctors’ Top Recommendations – There appears to be some imbalance between the types of activities patients are doing to cope with their lupus and the frequency in which rheumatologists are recommending them. Both doctors and patients place an exercise regimen near the top of the list, but doctors suggest participating in support groups or counseling sessions and accessing online education programs with much greater frequency than patients are actually doing. Dietary changes and religious or spiritual activities play a much larger role to patients than to doctors.

A

B

C C

C C

C AC

A

B

AB

AB

AB

AB

AB

A

30



Gender And Age Play A Large Role In The Types Of Things Patients Do To Help Cope With Their Lupus – With very few exceptions, men are significantly more likely than women to have tried both conventional and non-conventional coping mechanisms to help with lupus. The same is true of patients aged 18 to 34 as compared to their older counterparts; older lupus patients are much less likely to have ever done most of the items listed.

% strongly/somewhat agree

Gender Age


(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

Changed diet 72 72 72 72 73 69

Started or changed exercise regimen 66 73 64 73T 61 65

Accessed online or in-person education programs 50 70L 43 62TU 49U 35

Participated in a religious or spiritual-focused activity (e.g. prayer, religious study)

48 57L 45 54 44 49

Tried meditating or yoga 43 55L 40 55TU 40 33

Joined or attended a lupus support group 39 58L 32 45U 37 33

Consulted with a religious or spiritual advisor 36 56L 29 44U 34 27

Participated in group counseling or therapy sessions with other lupus patients

28 52L 20 40TU 24 19

Tried acupuncture 25 48L 17 37TU 17 23

Patients Q4: Have you ever done any of the following to help you cope with lupus? Base: Patients (n=502)

31



Patients Don’t Fully Express Their Worries About Lupus – Supporters do not necessarily recognize how far patients go to hide from the people who care for them how they truly feel about their lupus. Patients don’t disclose the degree to which: they worry about the long-term consequences of their lupus; they minimize the pain/worry they experience; they feel limited by their lupus; and they are depressed about not being able to perform everyday activities.

Patients Q6: How well does each of the following statements describe how you feel about having lupus? Supporters Q5: How well does each of the following statements describe your friend or family member with lupus? Base: Patients (n=502); Supporters (n=204)

7 1 4 5 8 5 7 5 10 4 18 10

11 17 10 20 11 16 10 14 13 20 17

19 31 41 41

46 37 40 39

48 37 47 36 43

51 41 46 29

44 39 43 33 40 29 30 28

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Describes very well Describes somewhat well Describes not very well Does not describe at all

I worry about the long-term health

consequences of lupus

I limit social contacts because of lupus

symptoms

I get depressed or angry when I can’t perform

everyday activities as a result of lupus

I believe lupus places limitations on my life

I feel like I’m on a roller coaster as I never know

what to expect

I minimize the pain or worries I experience

because I don’t want to upset my family

23 18 11 6 23 17 17 11 23

8 21 10

19 19 23 29 23

20 28 26

27

24

30 31

29 37 37 41 29 41 33 37 29

48 29

33

29 26 28 23 25 23 21 25 21 21 20 26

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Lupus makes me feel flawed as a person

I still have as much fun and spontaneity in my

life as before I had lupus

I believe nothing more can be done to help

my condition

I feel like I can keep up with things just as well

as everyone else I feel alone and

powerless

I feel confident and positive about my future

living with lupus

B

B

A

A A

B B

A A

A

B

B B

A

B

A

B B

A

B

32



% saying “describes me very well”/”somewhat well”

Gender Age


(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

I minimize the pain or worries I experience because I don’t want to upset my family 86 77 90K 80 93SU 83

I believe lupus places limitations on my life 82 78 84 80 85 80

I worry about the long-term health consequences of lupus 82 77 84 85U 85U 73

I feel like I’m on a roller coaster as I never know what to expect 81 81 81 83 84U 74

I get depressed or angry when I can’t perform everyday activities as a result of lupus 77 74 78 82U 79U 68

I limit social contacts because of lupus symptoms 66 73 63 71U 67 56 I feel confident and positive about my future living with lupus 66 67 65 63 67 66

Lupus makes me feel flawed as a person 59 69L 55 70U 62U 37 I feel like I can keep up with things just as well as everyone else 54 68L 50 64TU 50 49

I feel alone and powerless 54 59 52 66TU 54U 37 I believe nothing more can be done to help my condition 50 60L 46 55U 50 42 I still have as much fun and spontaneity in my life as before I had lupus 49 66L 44 59TU 44 44

Men Are Less Likely To Let Their Negative Feelings Stand In The Way Of Living Life – Despite a stronger belief that lupus makes them flawed as a person and nothing more can be done, men are also significantly more likely than women to feel they can keep up with everyone else and still say they have as much fun and spontaneity in their life as they did before their lupus diagnosis. Almost all women say they minimize their pain to not upset their families. Younger lupus patients demonstrate the strongest emotions, both positive and negative about living with lupus, especially in terms of feeling alone and powerless.

Patients Q6: How well does each of the following statements describe how you feel about having lupus? Base: Patients (n=502)

33



Doctors Report A Range Of Discussions With Lupus Patients – Patients are having a dialogue with their doctors about their feelings toward living with lupus. Doctors report that the most common area of discussion is that of long-term health consequences, which corresponds directly with what patients and supporters are describing as well. Interestingly, however, doctors do not realize the degree to which patients minimize their pain to protect their families. Almost 9 out of 10 patients say they do this, but doctors report these type of discussions are happening much less often.

Doctors Q4: How often do your patients report the following statements regarding how they feel about having lupus? Base: Doctors (n=251)

Doctors

2 5 2 2 6 7 20

33 27 11

28 42

38

37 49 88 66

51 40 24 22

Often reported Sometimes reported Rarely reported Never reported Don’t Know

My patients worry about the long-term health

consequences of lupus

My patients feel confident and positive

about their future living with lupus

My patients still have as much fun and

spontaneity in their life as before they had lupus

My patients feel like they’re on a roller

coaster as they never know what to expect

My patients get depressed or angry when

they can’t perform everyday activities as a

result of lupus

My patients believe lupus places limitations on

their lives

1 2 6 2 5 14 9 31 33 35 34

39 51

43 41 45 42 33

32 22 20 19 19 13 8

My patients minimize the pain or worries they

experience because they don’t want to upset

their family

My patients believe nothing more can be

done to help their condition

My patients feel like lupus makes them flawed

as a person

My patients limit social contact because of

lupus symptoms

My patients feel like they can keep up with things

just as well as everyone else

My patients feel alone and powerless

34



More Resources For Lupus Desired By Patients And Especially Supporters – Both patients and supporters “agree” that they wish there were more resources available to help handle issues faced by patients, but supporters seem more interested in such resources. Overall, supporters take a more active role in seeking out others who have lupus. Supporters are also more likely than patients to agree that there is a community already available where the lupus patients have a voice and can be heard.

Patients Q9: How much do you agree or disagree with each of the following statements? Supporters Q8: How much do you agree or disagree with the following statements about the availability of information

and the community of others living with lupus? Base: Patients (n=502); Supporters (n=204)

Supporters (B)

48

35

26

19

39

41

40

31

13

24

34

50

I wish there were moreresources available to helphandle issues that patients

with lupus face

It is easy to find credibleinformation on lupus and its

symptoms

I feel that there is acommunity available wherelupus patients have a voice

and can be heard

I actively seek out othersfacing the physical and

emotional stress of lupus

Strongly agree Somewhat agree Disagree (net)

Patients (A)

58

34

32

28

37

39

50

39

5

27

18

33

I wish there were moreresources available to helphandle issues that patients

with lupus face

I feel that there is acommunity available wherelupus patients have a voice

and can be heard

It is easy to find credibleinformation on lupus and its

symptoms

I actively seek out othersfacing the physical and

emotional stress of lupus


B

B

A

A

A

A A

35



% saying “strongly agree”/”somewhat agree”

Gender Age


(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

I wish there were more resources available to help handle issues that patients with lupus face 87 87 87 85 90 85

It is easy to find credible information on lupus and its symptoms 76 84L 74 77 78 73

For me, having lupus is a financial burden 73 77 72 79U 72 68

I feel that there is a community available where lupus patients have a voice and can be heard 66 82L 60 78TU 58 64

I actively seek out others facing the physical and emotional stress of lupus

50 73L 43 68TU 46U 33

Men Take A More Active Role In Seeking Out Information And Are More Likely To Believe It Exists – While men and women are equally as likely to wish more resources were available, men are significantly more likely than women to feel it is easy to find credible information and there is a community available for lupus patients. They are also more likely to seek out others with lupus. Patients aged 18 to 34 are twice as likely as those 55+ to say they actively seek out others facing the physical and emotional stress of lupus. Younger patients are also more likely than older patients to feel having lupus is a financial burden.

Patients Q9: How much do you agree or disagree with each of the following statements? Base: Patients (n=502)

36



Lupus Seen As A Financial Burden, Especially By Doctors – Doctors are more likely than both patients and supporters to agree that having lupus poses a financial burden. Half “strongly agree” with this statement. It should be noted that 3 out of 4 patients and a similar number of supporters do agree having lupus poses a financial burden.

Patients Q9: How much do you agree or disagree with each of the following statements? Supporters Q6: How much do you agree or disagree with the following statement? Doctors Q5: Tell me if you agree, or disagree with the following statement about your lupus patients. Base: Patients (n=502); Supporters (n=204); Doctors (n=251)

1 11 10

15 12

7

30 40

41

44 38

51

Patients(A)

Supporters(B)

Doctors (C)

Strongly agree Somewhat agree Somewhat disagree Strongly disagree Don’t know

Having lupus is a financial burden

C

C C

A

A

B



Relationship With Doctors

38



• Very few patients describe their doctors’ understanding of their struggles of living with lupus as poor. In fact, 3 out of 4 say their doctors have an excellent/good understanding of how lupus affects their daily activities and relationships. Patients also agree that they can talk freely with their physician about how lupus affects their daily lives and feel their doctor understands their symptoms. Yet, despite the positive feelings patients appear to have toward their doctors, only 1 in 3 “strongly agree” that their physician advocates for them.

• Supporters see the doctor/patient relationship a little differently. They are much less likely to “strongly agree” that doctors understand their patients’ symptoms and that patients can talk freely to their doctors.

• Even though patients believe they can talk freely to their doctors, they admit to often minimizing their symptoms. Supporters believe patients minimize their symptoms to their doctors even more frequently than patients admit. The majority of doctors, however, disagree when asked if patients do minimize their symptoms when talking with them.

• Almost all doctors see themselves as an important resource for their patients but they do feel frustrated by the limited resources available to educate their patients and agree their patients do expect more resources than are currently available. This possibly explains why only 1 in 3 patients and supporters “strongly agree” their physician provides useful tools and resources to help manage lupus. Doctors prefer printed materials over the Internet when asked which type of resource they use most often to provide information to their patients.

Doctor/Patient Relationship – At A Glance

39



Patients And Supporters Perceive The Doctor/Patient Relationship Slightly Differently – While half of patients “strongly agree” they can talk freely with their doctors, only 1 in 3 supporters say the same. Patients are also much more likely than supporters to “strongly agree” that their physicians understand their symptoms and have the time and resources to address their lupus. Tied back to an earlier finding, supporters are also more likely to agree that patients minimize their symptoms.

Patients Q8: How much do you agree or disagree with the statements below about your relationship with the primary physician managing your lupus?

Supporters Q7: How much do you agree or disagree with the statements below about your friend or family member’s relationship with their primary physician managing their lupus?

Base: Patients (n=502); Supporters (n=204)

Supporters (B)

Patients (A)

51

42

41

37

33

21

19

31

38

34

32

41

27

33

18

19

25

31

26

52

48

I can talk freely with myphysician about how lupus is

affecting my everyday life

My physician understands mysymptoms

My physician has the time andresources to address my needs

My physician provides usefultools and resources to help

manage my lupus

My physician advocates for me

I have difficulty describing mysymptoms to my physician

I tend to minimize mysymptoms when I talk with my

physician


35

33

32

31

30

25

20

39

43

43

45

40

41

40

24

21

23

22

26

30

38

His/her physician has the timeand resources to address

his/her needs

He/she can talk freely with thephysician about how lupus is

affecting his/her everyday life

His/her physician providesuseful tools and resources tohelp manage his/her lupus

His/her physician understandshis/her symptoms

His/her physician advocates forhim/her

He/she tends to minimizehis/her symptoms when he/she

talks with his/her physician

He/she has difficulty explaininghis/her symptoms to their

physician


B

B

B

B

B

A

A

A

A

40




Gender Age


(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

I can talk freely with my physician about how lupus is affecting my everyday life 82 88 80 78 83 85

My physician understands my symptoms 81 83 80 79 84 77

My physician has the time and resources to address my needs 75 82L 73 79 72 75

My physician provides useful tools and resources to help manage my lupus 69 81L 65 72 68 68

My physician advocates for me 74 81L 72 80U 73 69 I tend to minimize my symptoms when I talk with my physician

52 61L 49 65TU 51U 37

I have difficulty describing my symptoms to my physician 48 56L 45 61TU 48U 30

Despite Feeling Their Physician Has The Tools To Help Manage Their Lupus, Men Are More Likely To Both Minimize And Have Difficulty Describing Their Symptoms – Younger patients are also significantly more likely than their older counterparts to also say they minimize their symptoms and have difficulty describing them to their doctors, but they are most likely to agree their physician advocates for them.

Patients Q8: How much do you agree or disagree with the statements below about your relationship with the primary physician managing your lupus?

Base: Patients (n=502)

41



Patients Believe Doctors Have Good Understanding Of Their Life – Patients give their physicians high marks for understanding how their lupus affects their daily activities and relationships, but only 1 in 3 goes as far as saying their physician has an “excellent” understanding of what they are going through.

Patients Q7: How would you rate your physician’s understanding of how lupus affects your daily activities and relationships? Base: Patients (n=502)

Patients

Excellent 35%

Good 41%

Fair 18%

Poor 7%

42



Rheumatologists View Themselves As An Important Resource For Patients – Most believe their patients are open and honest with them about their symptoms. A majority of doctors disagree that patients minimize their symptoms when they talk about their lupus, but as described earlier, this may not necessarily be true.

I am an important resource for my patients in managing

their lupus

1 1 4 14 1 6 17

32

11

40

49

37 87

53 29

16


Doctors Q6: Tell me if you agree, or disagree with the following statements about lupus… Base: Doctors (n=251)

My patients are truthful with me about their symptoms

I have the time to help my patients effectively manage the impact of the disease on

their quality of life

Doctors

My patients expect more from me and the medical advice

than I can provide

As a physician, I am frustrated by the limited resources to

educate my patients

1 17 9

29 22

29 38

43 49

38 39

24 27 16 14 3 2

My patients expect more resources than are currently

available (such as online sites, pamphlets, fact sheets)

My patients minimize their symptoms when speaking

with me My patients overstate

their symptoms

43



Printed Materials Top Patient Information Resource For Doctors – When providing information for their patients, doctors most often rely on printed materials as their primary resource. The Internet follows second, with other resources such as advocacy organizations and support groups trailing.

Printed materials

18 25

17 13

25

2

20

34

13 13

19

1

42

25

12 11

8

1

First resource Second resource Third resource

Doctors Q7: I am going to read a list of resources that you might use to provide information to your patients. After I read the complete list, I would like you to tell me which ONE is the resource you use most. Which one is second and finally which one you use third. The list of resources includes…

Base: Doctors (n=251)

Internet

Doctors

Other Advocacy

organizations Support groups Other healthcare

professionals

44



Doctors Feel They Have Limited Resources To Help With Relationships – While most doctors “agree” they are available to help patients navigate the impact of the disease on their relationships, they don’t necessarily feel they have the resources. Fewer than 1 in 3 doctors “strongly agree” that they have such resources.

I am available to help my patients with the impact of their disease on

their relationships

3 3

12 20

41

46

44 31


Doctors Q9: Please tell me whether you agree or disagree with each of the following statements. Base: Doctors (n=251)

I have the expertise to help my patients manage the impact of

their disease on their relationships

Doctors

45



Doctors See Lack Of Knowledge As Impediment To Diagnosis – While doctors agree there is an overall lack of knowledge about lupus that impacts the speed of diagnosis, they don’t necessarily agree that the complexities of the disease impact their ability to give optimal care to their patients.

The general lack of knowledge about lupus impacts the speed of diagnosis of the disease and the prompt referral to appropriate

skilled care

6

27 13

27 41

35

39

11


Doctors Q16: Please tell me how much you agree or disagree with the following. The first statement is Base: Doctors (n=251)

The complexities of lupus impacts my ability to give optimal care to

these patients

Doctors



Relationship With Family/Friends

47



• Supporters take the word “support” to heart with almost 8 in 10 describing themselves as “very supportive” of the lupus patient they help care for. Patients are less likely to describe their friends and family as “very supportive,” though half do make this assessment. Doctors are far less likely to describe the families and friends of their patients as “very supportive.” Only 1 in 3 does so.

• Regardless of how many patients describe their caregivers as “very supportive,” they do feel a certain degree of doubt from their friends and family. Large majorities of patients “agree” that their friends and family think patients can do more than they actually can, they can improve their condition by eating better and having lupus makes them passive and unmotivated.

• Doctors are also much more pessimistic about the impact lupus has on specific relationships. Specifically, patients are twice as likely as doctors to say lupus has had a “positive” impact on their relationship with their spouse/significant other, children, other family members and friends.

• Supporters are in a unique position, since they are juggling care for the family member or friend with lupus and their own friends and family. For the most part, supporters are positive, noting their support of someone with lupus has had a positive impact on their own relationships with their spouse, children, friends and other family members.

• Still, supporters acknowledge that caring for a friend or family member with lupus can strain a relationship.

Relationship With Family/Friends – At A Glance

48



Assessments Of “Support” Of Patients Varies Greatly By Respondent Type – While half of patients say their family/friends are “very supportive,” nearly 8 out of 10 supporters describe themselves as “very supportive” of their friend/family member with lupus. Doctors, interestingly, are least likely to perceive a patient’s family/friends as “very supportive” (34%).

Patients Q14: How supportive would you say your family and friends have been of your illness? Supporters Q12: How supportive would you say you are of your friend or family member with lupus? Doctors Q12: For most of your patients, would you say that their families and friends are: Base: Patients (n=502); Supporters (n=204); Doctors (n=251)

Patients (A)

52% 34%

11%

3%

Very supportive

Somewhat supportive

Not very supportive

Not at all supportive

Supporters (B)

78%

22%

Doctors (C)

34%

61%

6%

B

B

B

A

49



Degree of support received from family & friends (%)

Total Patients

Limited by 7 or more

activities but hope and optimistic


minimize symptoms so not

to upset the family




wish there were more

credible information

(A) (B) (C) (D) (E)

N=118 N=244 N=248 N=200

Supportive (net) 86CD 91 80 81 86

Very supportive 52CDE 51 42 42 46

Somewhat supportive 34 40 38 38 40A

Not Supportive (net) 14 9 20A 19A 14

Not very supportive 11 8 17A 17A 13

Not at all supportive 3 2 3 2 2

A Perceived Lack Of Support Is More Common Among Those Who Feel Alone & Powerless/Minimize Their Symptoms And Those Who Feel Alone & Powerless/Wish For More Information And Resources – The total sample of patients is significantly more likely than the same segments to feel friends and family are supportive.

Patients Q14: How supportive would you say your family and friends have been of your illness? Base: Patients (n=502)

50



Lupus Seen As Affecting Relationships – Doctors who treat patients with SLE are much more likely than both patients themselves and than supporters to feel lupus has negatively impacted patients’ relationships with their spouse, children, other family members and friends. Patients are more positive than supporters or doctors overall. Supporters were asked how taking care of someone with lupus has affected their own personal relationships and they too are fairly positive; in fact, they are often close to twice as likely as patients to say it has had a positive impact on each of their relationships.

Spouse, significant other, partner

30 32

7

39 36

16

38 35

17

39 37 23

42 23

81 31

22 73

36

24 70

38

22 65

27

45

13

31 42

12

26 41

13 22

41

12

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Positive impact Negative impact No impact at all

Patients Q13: What overall impact, if any, has lupus had on your relationship with each of the following? Supporters Q11: What overall impact, if any, has caring for or supporting a friend or family member with lupus had on your relationship with each of

the following? Doctors Q10: In general, would you say that the disease has had a positive impact, a negative impact, or no impact on your patients’ relationships

with each of the following? Base: Varies for each (excludes don’t knows & not applicables)

Children Other family members Friends

C

B

C C

AC

AB

C

B

C C

AB

AC C

B

C C

AB

AC

C

B

C C

AB

AC

51



Patients Feel Others Sometimes View Them Critically – Two-thirds or more patients “agree” that friends and family think patients can do more than they actually can, think patients can improve their condition by eating better and believe that they can identify with living with lupus. The majority of patients also agree that their family and friends believe their lupus symptoms make them unmotivated and that lupus has affected their reliability and dependability.

People think I can improve my condition

by eating better or exercising more and

simply motivating myself to feel better

9 12 16 19 13

11 14

17 23

19

42 39

35

33 41

38 36 32 26 26

Strongly agree Somewhat agree Somewhat disagree Strongly disagree

Patients Q5: How much do you agree or disagree with the following statements about having lupus? Base: Patients (n=502)

Family and friends think I can do much more than I actually can

My lupus symptoms make other people

think I am passive or unmotivated

Patients

People think that lupus affects my reliability

and dependability

Family and friends think they understand what

it’s like to live with lupus

52



Supporters Perceive Little Change In The Relationship Between Lupus Patients And Their Friends – Supporters are twice as likely to comment that their friend or family has kept their close friends rather than to report that the patient has been struggling to maintain their friendship due to the lupus.

Supporters Q13: Which of the following statements best describes the relationships of your friend or family member with other people since being diagnosed with lupus?

Base: Supporters (n=204)

60

30

6

3

They have kept their close friends

They struggle with maintaining relationshipswith friends due to the lupus

They have few or no close friendships due tolupus

Don’t know

Supporters

53



Lupus Appears To Have A Considerable Effect On Patients’ Sexual Relationships – Two-thirds of patients say their sexual relationship has deteriorated due to their lupus.

67

32

1

My sexual relationship has deteriorated due to lupus

My sexual relationship has not changed due to lupus

My sexual relationship has improved due to lupus

Patients

Patients Q15: Which one of the following statements best describes your sexual relationship with your spouse or partner? Base: Patients who did not respond “do not currently have a spouse or partner” or “prefer not to answer” (n=350)

54



Lupus Puts Strain On Relationships – Patients and supporters are in agreement that having lupus puts a strain on their relationships. The perceived degree of that strain is also similar. Seven out of 10 patients agree that “lupus affects virtually every relationship a patient has” and a similar number of supporters agree as well. One noticeable difference between the two groups pertains to the degree to which patients with lupus maintain relationships with others who have the disease. Supporters are much more likely to agree that they do so.

Patients Q19: In your opinion, to what extent do you agree or disagree with the following statements, when it comes to how lupus affects relationships.

Supporters Q17: In your opinion, to what extent do you agree or disagree with the following statements, when it comes to how lupus affects relationships?

Base: Patients (varies (excludes those who preferred not to answer/not applicable)); Supporters (varies (excluded don’t know)) *only asked if patient was single or divorced

Supporters (B)

Patients (A)

42

34

35

30

22

20

30

34

41

27

32

19

28

32

24

43

45

61

I engage in sexual activity lessfrequently because of lupus

Lupus affects virtually everyrelationship a patient has

Caring for a loved one with lupuscan strain a relationship

I would still be married or in aserious dating* relationship if it

were not for lupus

People with lupus tend to maintainrelationships with others who have

the disease

I have had someone end arelationship with me specifically

due to lupus


30

27

28

20

43

47

44

33

27

25

28

47

Caring for a friend or familymember with lupus can strain a

relationship

Lupus affects virtually everyrelationship a patient has

People with lupus tend tomaintain relationships withothers who have the disease

My friend or family member withlupus has had someone end a

relationship with themspecifically due to lupus


B

B

A

A

A

55




Gender Age


(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

Caring for a loved one with lupus can strain a relationship 68 73 66 71U 70 60

Lupus affects virtually every relationship a patient has 66 74L 63 67 64 66

I engage in sexual activity less frequently because of lupus 57 73L 51 60U 61U 44

People with lupus tend to maintain relationships with others who have the disease 47 67L 40 60TU 41 39

I have had someone end a relationship with me specifically due to lupus 32 55L 24 45TU 31U 15

IF SINGLE, SEPARATED OR DIVORCED: I would still be married or in a serious dating relationship if it were not for lupus 43

(n=205) 55L

(n=60) 38

(n=145) 49U

(n=78) 50U

(n=76) 24

(n=51)

Men Have Experienced More “Loss” Due To Lupus Than Have Women – This loss comes in the form of lost relationships, divorce and less frequent sexual activity. Men are also significantly more likely to agree “lupus affects virtually every relationship a patient has” and “people with lupus tend to maintain relationships with others who have the disease.” Younger lupus patients, especially those aged 18 to 34, are similarly much more likely to see lupus having negative effects on their relationships than their older counterparts.

Patients Q19: In your opinion, to what extent do you agree or disagree with the following statements, when it comes to how lupus affects relationships.

Base: Patients (n=502)



Career

57



• While the physical symptoms of lupus receive a lot of deserved attention, lupus “complicates” patients’ lives in other areas. Career changes often result from living with lupus, and are not always viewed positively. Half or more patients have quit working or have retired earlier than planned, have reduced the number of hours worked, have started receiving disability benefits or have changed to a less strenuous job as the result of their lupus. Lupus has also harmfully affected their relationships with their co-workers and made them less productive, thus negatively impacting their careers. Supporters and doctors are well aware of the impact lupus has on a patient’s career and for the most part are in agreement as to how often they are having to make changes.

• Career changes play a big role in the emotional aspect of living with lupus. Half or more patients

“strongly agree” that they were devastated by having to leave their job, that they miss the social interaction that comes from the work environment, and that not working makes them feel both inadequate and like they are not contributing to their fair share of the household.

• Patients are not the only group whose career changes as a result of the lupus diagnosis: supporters’ careers are also greatly impacted by having to care for lupus patients. Just under half of supporters say they have reduced the number of hours worked, while more than one in three changed to a less strenuous job or started receiving disability benefits.

Career – At A Glance

58



Lupus Impacts Patients’ Career – A majority of patients, supporters and doctors report a change in patients’ career plans due to lupus. Close to two-thirds of patients report reducing the number of hours worked, or quitting work/retiring earlier than planned. Most doctors report that their patients often or sometimes have made the same changes.

Patients Q10: Have you ever done any of the following due to lupus? Supporters Q9: Has your friend or family member with lupus ever done any of the following due to lupus? Doctors Q8: How frequently do you hear reports that your patients have done any of the following due to lupus? Is it often, sometimes, rarely or

never? Base: Patients (n=varies (excludes those who said “not applicable”)); Supporters (n=excludes those who said “not applicable”); Doctors (n=251)

% saying “yes” to each

63

67

51

51

44

50

63

47

55

39

Patients(A)

Supporters(B)

Quit working or retired earlier than planned

Reduced the number of hours worked

Started receiving disability benefits

Changed to a less strenuous job

Changed college major, course load, or career path to accommodate disease

burden

42

29

25

23

16

53

54

54

55

47

4

15

21

22

32

1

1

5 1

Reduced the number of hoursworked


Started receiving disabilitybenefits

Quit working or retired earlierthan planned

Changed college major, courseload, or career path to

accommodate disease burden

Often Sometimes Rarely Never Don’t know

Doctors

B

59



Career Path Of The Supporter Is Also Impacted By Their Caregiving Responsibilities – Just under half of supporters have had to reduce the number of hours they work, while 1 in 3 report having changed to a less strenuous job or started receiving disability benefits.

Supporters Q10: Have you ever done any of the following because of caring for your friend or family member with lupus? Base: Supporters (varies (excludes those who said “not applicable”))

47

37

34

30

25

Reduced the number of hours worked


Started receiving disability benefits

Changed college major, career path, or courseload to accommodate disease burden

Quit working or retired earlier than planned

Supporters % saying “yes” to each

60



Lupus Impacts Productivity And Has An Undesirable Affect On Relationships With Co-workers – Reduced productivity both through sick days and a general sense of contributing less appears to be another “side-effect” of lupus. Seven out of 10 patients say having the disease has negatively impacted their career. An equal number say they only told a few co-workers about having lupus.

80

72

69

69

52

Lupus caused me to take more sick days than Iwould take if I were not affected by lupus

Because of lupus, I’m not as productive as I could be at work

Lupus negatively impacted my career

I told only a few co-workers about having lupus

Lupus has had a negative impact on my relationshipswith my employer and co-workers

Patients Q11: Do you feel each of the following statements applies to your own experience? Base: Patients (varies (excludes those those who said “not applicable”))

Patients % saying “yes” to each

61



Inability To Work Is “Devastating,” Making Patients Feel “Inadequate” – Majorities “strongly agree” that having to leave their job was “devastating” and not working makes them feel “inadequate.” The social interaction, which speaks to state of mind, is also greatly impacted by not being able to work. Not contributing also weighs heavily on lupus patients.

Patients Q12: How much do you agree or disagree with each of the following statements? Base: Patients (varies (excludes those who said “not applicable to me”) * Asked only among those patients who reported being on disability (n=114)

Patients

58

53

51

50

43

21

25

32

33

32

32

34

17

11

16

18

25

44

Having to leave my job due to my lupus was devastatingto me

I miss the social interaction that comes from a workenvironment

Not working makes me feel inadequate

Not working makes me feel that I am not contributing afair share to the household

Being defined as disabled makes me depressed*

Being defined as disabled has made me more accepting ofmy limitations*




Quality of Life

63



• Doctors believe that it is the severity of lupus patients’ symptoms that are most impactful to their life, but patients disagree. They comment it is the unpredictability or variability of symptoms that has the biggest impact on their relationships, work and daily function. Supporters are equally as likely to say both are most impactful.

• Mindset is another area in which doctors and patients differ. Patients are twice as likely as doctors to

“strongly agree” with the statement, “patients living with lupus are misunderstood.” They are also significantly more likely to say they have difficulty communicating what they need from others in terms of support than doctors believe to be true. Perhaps showing the biggest disconnect, only 11% of doctors “agree” that people with lupus are able to have the same quality of life as individuals not affected by lupus, compared to 56% of patients and 60% of supporters.

• Patients may feel they can have the same quality of life as individuals without lupus but the majority admit the disease has significantly affected both their self-worth and their ability to perform their daily responsibilities.

Quality of Life – At A Glance

64



Specific Impact Of Lupus Varies – There is some disagreement as to which aspect of lupus is most impactful. Patients say it is the unpredictability or variability of symptoms, while supporters and doctors believe it is the severity of disease symptoms. The “feelings” and “emotions” of living with the disease are more impactful to patients and supporters than to doctors.

Severity of disease symptoms

21 14 16 13 16 20

42 37 37 24 25 27

25 27 28 38 32

45

27

22 16

10 16 11

34 38

48 39 34

28 17

19

11

9 7 12

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Most impactful Somewhat impactful Least impactful

Patients Q16: With regard to the overall impact of lupus on your life (relationships, work and daily function) which of the following items is most impactful? Which is second? And which is third?

Supporters Q14: With regard to the overall impact on yourfriend or family member’s life (relationships, work,and daily function) which of the following items is most impactful? Which is second? And which is third?

Doctors Q11: With regard to their overall impact on your patients’ lives (relationships, work anddaily function) which of the following items is most impactful? Which is the second? And which is third? Please let me read the entire list before answering.

Base: Patients (n=502); Supporters (n=204); Doctors (n=251)

Unpredictability or variability of symptoms

Feelings and emotions from living with the disease

Lack of understanding about the disease

B

AB C

B

A

C

C

C

A

65



Mindset Of Dealing With Lupus Varies – The mindset of someone living with lupus is different from the supporter taking care of them and the doctor involved in their care. Patients do not want the disease to define them and seem determined to make the best of their situation. They do often feel misunderstood but do not necessarily feel ignored. Supporters also do not want the disease to define the patient but recognize the emotional support needed. Doctors appear to focus on the emotional investment but are as likely to agree that patients need to make the best of their situation.

Patients Q17: How much do you agree or disagree with the following statements when it comes to the descriptions about people who have lupus? Supporters Q15: How much do you agree or disagree with the following statements, when it comes to descriptions about people who have lupus? Doctors Q13: Do you agree, or disagree with the following statements, when it comes to descriptions about people who have lupus? Base: Patients (n=502); Supporters (n=204); Doctors (n=251)

1 2 1 2 1 3 4 5 2 2 2 4 2 1 6 7 10 7 7 6 10 10 16 6 10 6 13 13 5

11 17 19 14 17 22

28 41 35

37 49

41 41 44

39 41

40 51

44 48 52

59 45 44 55

38 51 42 40

55 41 34 19

35 26 20

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Living with lupus affects patients’ lives, but does not

define them as people


Life with lupus is a struggle, but people living with it have

to make the best of it

People living with lupus have a lot to manage with their care

and require a large investment in time and emotional support

People living with lupus are misunderstood

People living with lupus often have difficulty communicating what they need from others in

terms of support

4 1 1 3 1 1 1 9 8 7 17 20 52

18 14 22 15 18 17 18 18 23

27 19

37

27 23

42 28 20 29

41 41 42 30 36

8

32 36

30

37 39 45

32 29 27 26 24 3

23 23 5

19 23 8

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

Patients(A)

Supporters(B)

Doctors(C)

People living with lupus want to have close relationships with others, but the nature of the disease often

prevents them from doing so

People with lupus are able to have the same quality of life as

individuals not affected by lupus

People with lupus keep to themselves and would rather be

alone than spend time with others People living with lupus

are ignored

BC

A A

A

A

B B

C C

C

AB C C

A

A

A

AB

BC

A

A

C

C

C

B

C

C B

AB

C C

AB

B

C C

B B

A

66




Gender Age


(K) (L) (S) (T) (U)

N=128 N=374 N=168 N=210 N=124

Life with lupus is a struggle, but people living with it have to make the best of it 92 88 93 88 93 96S

Living with lupus affects patients’ lives, but does not define them as people 87 81 89K 83 90 88

People living with lupus have a lot to manage with their care and require a large investment in time and emotional support 83 81 84 85 83 82

People living with lupus are misunderstood 82 82 83 83 82 82

People living with lupus often have difficulty communicating what they need from others in terms of support 78 77 79 76 82 76

People living with lupus want to have close relationships with others, but the nature of the disease often prevents them from doing so 73 78 71 77 72 68

People living with lupus are ignored 57 68L 53 64U 56 48

People with lupus are able to have the same quality of life as individuals not affected by lupus 56 67L 52 61U 56 49

People with lupus keep to themselves and would rather be alone than spend time with others

55 68L 51 60U 57 46

Women Don’t Let Their Lupus Define Them, While Men Are More Likely To Keep To Themselves And Feel Ignored – Men are much more likely than women to agree that “people living with lupus are ignored” and “people with lupus keep to themselves and would rather be alone than spend time with others.” Women, on the other hand, are significantly more likely to agree “lupus does not define them as people.” Patients aged 18 to 34 also appear to be struggling with feelings of being ignored and wanting to keep to themselves.

Patients Q17: How much do you agree or disagree with the following statements when it comes to the descriptions about people who have lupus? Base: Patients (n=502)

67



Lupus Interferes With Social Activities And Obligations – For the most part, patients and supporters are in agreement that this interference happens, but the frequency in which it does differs. Patients are much more likely than supporters to say they have “often” canceled a social event, stayed home from religious/volunteer activities and stopped participating in a recreational activity or sport.

Patients Q18: Have you done any of the following due to lupus? Supporters Q16: To the best of your knowledge, has your friend or family member with lupus ever done any of the following due to lupus? Base: Patients (n=varies (excludes those who said “not applicable”)); Supporters (n=excludes those who said “not applicable”)

Canceled a social event with friends or family

15 21 30 29 26 27 19

25 20 25 16 23

38 36 30 29

34 32

28 18 19 16 24 19

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Yes, Often Yes, somewhat Yes, rarely No, never

Left the room to avoid being with others

Ignored phone messages or e-mail messages from friends or family

Stayed home from religious or volunteer activities

Been unable to care for my children

Stopped participation in a recreational activity or sport

20 24 31 27 12 16

18 24

26 22

16 24

36 36 28 33

31 39

27 15 15 18 41

22

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

Patients(A)

Supporters(B)

85 79 70 71 74 74

80 76 69 73 88 84

% yes

% yes

B

B B

A

A

A

68



Patients Q21: Please rate your level of agreement with the following: Patients Q20: Please indicate how much lupus significantly impacts the following: Base: Patients (n=502)

Patients

33

31

37

26

17

23

8

8

5

11

Your ability to preform yourdaily responsibilities

Your self-worth

Very significantly Mostly significantlyNeutral Mostly insignificantlyNot at all significantly

15 12 16 32 25 I seldom experience pain

from lupus that prevents mefrom my daily rountine

Completely agree Mostly agreeAgree Mostly disagreeCompletely disagree

% How significantly they are impacted

Daily Impact Of Lupus – Seven out of 10 patients say lupus has significantly impacted their ability to perform their daily responsibilities, while half say the same about their self-worth. In addition, well over half of patients “disagree” that the pain from lupus seldom prevents them from their daily routine.

69



% saying lupus “very/mostly” significantly impacts self-worth

Total Patients

Limited by 7 or more

activities but hope and optimistic


minimize symptoms so not

to upset the family




wish there were more

credible information

(A) (B) (C) (D) (E)

N=118 N=244 N=248 N=200

Very/Mostly (net) 58 67A 78A 79A 77A Very significantly 31 45A 50A 48A 46A Mostly significantly 26 22 29 30 31

Neutral 23CDE 21 16 16 18

Mostly/Not at all (net) 19BCDE 12 5 5 6

Mostly insignificantly 8CDE 7 3 2 3

Not at all significantly 11BCDE 5 2 3 3

Self-Worth Is Significantly Impacted When Some Degree Of Powerlessness Is Felt – Patients who feel alone and powerless/minimize their symptoms and those who feel alone and powerless/wish for more information and resources say their self-worth is significantly impacted by having lupus.

Patients Q20: Please indicicate how much lupus significantly impacts the following – your self-worth? Base: Patients (n=502)

70



Patients

31 25 26 12 7 My healthcare professional is the best there is

when it comes to managing my lupus

Completely Agree Mostly agree Agree Mostly disagree Completely disagree

Patients Believe In Healthcare Professionals – Encouragingly, almost all patients agree that their healthcare professionals are the best out there when it comes to managing their lupus.

Patients Q21: Please rate your level of agreement with the following: Base: Patients (n=502)



Demographics

72



Demographics – Patients (1/2)

Living Arrangement

Live alone 20

Live with spouse, partner, or significant other 39

Live with child or children and no other adults 8

Live with children and spouse, partner, or significant other 23

Live with other relative(s) or close friend(s) (not a child/spouse) 9

Live with a roommate 1

Children Below 18 (based on those living w ith children, n=156)

1 51

2 29

3 or more 21

Relationship Status

Single, never married 23

Married 48

Separated 3

Divorced 15

Widowed 2

Living with someone, but not married 9

Employment

Employed full-time 31

Employed part-time 9

Student full-time 5

Student part-time *

Self-employed or homemaker 10

Unemployed, collecting disability payments 23

Unemployed, not collecting disability payments 11

Retired 11

Retired Due To Lupus Base: Unemployed/ Retired (n=223)

Yes 69

No 31

Medical Condition

High blood pressure 50

High cholesterol 41

Diabetes 23

Depression or anxiety 62

Raynaud’s disease 33

Sleeping problems 71

Gender (n=502)

Male 25

Female 75

Age

18 to 24 12

25 to 34 21

35 to 44 18

45 to 54 24

55 and older 25

Mean 43.1

Region

Northeast 18

Midwest 20

South 42

West 21

Community

Rural (countryside) 22

Suburb 44

City 34

73



Demographics – Patients (2/2)

Education (n=502)

Less than high school 2

High school graduate 18

Some college 31

Trade/technical/vocational training 8

College graduate 28

Post graduate work/degree 13

Prefer not to answer 1

Household Income

Under $30,000 27

$30,000-less than $40,000 13

$40,000-less than $50,000 10

$50,000-less than $75,000 16

$75,000-less than $100,000 12

$100,000-less than $125,000 3

$125,000-less than $150,000 4

$150,000 and over 6

Don’t Know 1


Hispanic

Yes 10

No 88


Race

Caucasian/White 77

African-American/Black 14

Asian or Pacific Islander 3

Native American 3

Mixed with no major ancestry 4


74



Demographics – Supporters

Gender (n=204)

Male 53

Female 47

Age

18 to 24 22

25 to 34 38

35 to 44 22

45 to 54 10

55 and older 8

Mean 34.3

Region

Northeast 20

Midwest 17

South 40

West 23

Community

Rural (countryside) 18

Suburb 46

City 37

Education

Less than high school 1

High school graduate 17

Some college 24

Trade/technical/vocational training 2

College graduate 45

Post graduate work/degree 9


Household Income

Under $30,000 15

$30,000-less than $40,000 14

$40,000-less than $50,000 9

$50,000-less than $75,000 17

$75,000-less than $100,000 15

$100,000-less than $125,000 13

$125,000-less than $150,000 7

$150,000 and over 7


Hispanic

Yes 17

No 80


Race

Caucasian/White 75

African-American/Black 12

Asian or Pacific Islander 10

Native American 2

Mixed with no major ancestry 4


75



Demographics – Doctors

Referred To Other Physician (n=251)

Yes 94

No 6

Lupus Patients Treated For…

High blood pressure 99

High cholesterol 96

Diabetes 88

Depression or anxiety 98

Raynaud ‘s disease 94

Sleeping problems 88

Type Of Practice

Lupus clinical research facility 3

Academic Center or University Facility

16

Private Practice 78

Public Clinic 3

Treating Lupus

10 years or less 29

11 to 24 years 39

25 years or more 32

Mean (years) 17.9

Number Of Lupus Patients

Less than 100 28

100 to less than 200 31

200 or more 41

76



Media Inquiries

Diana Torres (212) 819-4895 [email protected]

mailto:[email protected]

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