Transcript 36x72 poster template

Impact of body changes on the quality of life of HIV-positive treatment experienced patients
An online community-based survey
Nelson Vergel
[email protected]
Program for Wellness Restoration (PoWeR)- Houston, Texas
Powerusa.org
BACKGROUND
Eleven years have passed since the first report of lipodystrophy at an HIV conference. The excitement and hope for a longer
life that accompanied the arrival of Highly Active Anti-Retroviral Therapy (HAART) was then tempered by accounts of
humps, bellies, and facial wasting. A decade on, many unanswered questions and misconceptions about HIV associated
lipodystrophy persist with only a limited number of treatment options available. Frustrated while waiting for answers, many
people living with lipodystrophy have turned to the internet for advice, treatment and support in hopes of reversing some of
the devastating effects of this stigmatizing syndrome that decreases their self image, mental health, quality of life, and the
possibility to re-enter the work force. Most approved interventions for lipodystrophy are perceived as purely cosmetic and
have a very low probability of reimbursement. Therefore, it is extremely important that more data are generated from
patients to enable advocacy for policy change in third party reimbursement guidelines for HIV-associated body changes. This
is the first large online survey of its kind that attempts at determining lipodystrophy-related issues affecting patients in the
field.
What kind of body changes are you experiencing or have you experienced?
METHODS
A link to a survey with 23 multiple-choice and open ended questions was posted in pozhealth asking people to share information about demographics, time since
diagnosis, HIV medication and thymidine analog exposure, perceived body changes , incidence of depression/anxiety, suicidal thoughts, medication interruptions,
social interaction, self-image, therapeutic interventions and their cost coverage, use of lipoatrophy-related products, incidence of lipid and glucose abnormalities,
perceptions on the role that HIV medications play on body changes, and community input for lipodystrophy researchers. The survey was publicized for 9
months in 2007-2008 with the volunteer help of TheBody.com and other online venues. It is a work-in-progress with more people parcipating as time progresses.
Answer Options
Involuntary weight loss/wasting
Abdominal (Belly) Fat Gain
Facial Wasting
Butt Wasting
Veiny Legs or Arms
Increased Breast Size
Buffalo Hump (Behind The Neck)
Increased Neck Size
Parotid Gland Enlargement (sides of face)
Other
To collect data on the impact of HIV-related lipodystrophy and its management on quality of life of HIV-positive members of
pozhealth at yahoogroups.com, a 6-year listserve with close to 3000 members
As of October 2008, a total of 1011 people had participated, with a majority being white males over 40 years old, with over 10 years since HIV diagnosis, on
HAART for over 5 years, and with prior exposure to stavudine and AZT. 90% self reported body changes including facial lipoatrophy (78%), buttock wasting
(71.3 %), venomegaly in extremities (68%), abdominal fat (62.4 %), and wasting syndrome (44%.) Due to body changes, past or current depression or anxiety
was present in 87% of survey responders and 25% had suicidal thoughts in the past. 41% had interrupted HAART due to body changes in the past. Over 50% of
survey responders stopped socializing and dating, decreased sexual activity, had decreased self-image, stopped looking at themselves in the mirror, and changed
clothing style. The most popular therapeutic interventions used were exercise and nutritional changes, followed by facial fillers, supplements and testosterone.
Most used own funds to pay for therapies. 40% have done nothing about their facial lipoatrophy, 30% used polylactic acid, and 32% have switched from
stavudine to tenofovir or abacavir. 70% had high lipids and 29% had high glucose in the past. Most participants perceived that HIV medications caused their
body changes. 505 participants posted suggestions to guide further research (available upon request.) More results and details can be found at :
facialwasting.org/surveys.lists
How old are you?
Answer Options
Under 15 years old
15-20
20-25
25-30
30-35
35-40
40-45
45-50
50-55
55-60
Over 60
What is your ethinicity?
Response
Percent
0.1%
0.1%
0.6%
1.8%
4.6%
8.7%
22.8%
22.8%
20.1%
11.8%
6.7%
Response
Count
1
1
6
18
46
87
229
229
202
119
67
How long have you known that you are HIV positive?
Answer Options
Under 5 years
5- 10 years
10-15 years
15-20 years
over 20 years
Response
Percent
9.8%
14.0%
21.2%
28.7%
26.4%
Response
Count
98
141
213
288
265
If you are taking or have taken medications for HIV, how long have you
taken them (total years)?
Answer Options
Under 5 years
5-10 years
10-15 years
15-20 years
Response
Percent
14.9%
22.0%
36.9%
26.2%
Response
Count
145
215
360
256
Have you had body shape changes after starting HIV medications in the
past?
Answer Options
Yes
No
printed by
www.postersession.com
Response
Count
432
612
763
699
666
217
213
162
159
66
86
Have the body changes cause you to: (check all that apply)
RESULTS
OBJECTIVE
Response
Percent
44.0%
62.4%
77.8%
71.3%
67.9%
22.1%
21.7%
16.5%
16.2%
6.7%
If other, please
specify
Response
Percent
89.2%
10.8%
Response
Count
902
109
Response
Percent
78.6%
7.0%
9.4%
1.6%
1.0%
2.5%
Answer Options
White
Black
Latino
Asian
American Indian
Other
Response
Count
790
70
94
16
10
25
What is your gender?
Answer Options
Female
Male
Transgender
Response
Percent
12.1%
87.6%
0.3%
Response Count
122
880
3
Answer Options
Stop socializing and going out to meet people
Stop dating
Decrease sexual activity
Increase sexual activity
Worry too much about people finding out you are
HIV+
Be rejected by potential sexual partners
Affect your job performance
Stop looking at yourself in the mirror
Change your clothing style
Abuse drugs or alcohol to feel better
Deplete your finances in search of a solution
Other
Response
Percent
94.9%
5.1%
Response Count
954
51
Have you taken any of these medications in the past?
Answer Options
Zerit (D4T)
AZT
Crixivan
High dose Norvir
Hydroxyurea
DDI (videx)
DDC (Hivid)
Response
Percent
83.3%
80.2%
51.2%
36.7%
12.6%
54.6%
30.0%
Response Count
747
719
459
329
113
490
269
Do you have or have you had high cholesterol/triglycerides?
Answer Options
Yes
No
I do not know
Response
Percent
68.4%
26.1%
5.5%
Response Count
675
258
54
Response
Count
620
486
697
33
59.9%
569
56.1%
26.2%
56.7%
57.1%
16.8%
28.7%
7.1%
533
249
539
542
160
273
67
What have you done to try to reverse your body changes? (check all that
apply)
Answer Options
Exercised more
Watch what I eat
Got my face injected with a filler or cosmetic product
Got my parotid glands treated with radiation
Took supplements that I heard may help my body
fat/muscle
Used testosterone
Used human growth hormone
Used nandrolone (Deca durabolin)
Used Oxandrin
Got liposuction
Got butt implants
Use padded underwear
Other
Are you currently taking HIV medications?
Answer Options
Yes
No
Response
Percent
65.3%
51.2%
73.4%
3.5%
Response
Percent
73.2%
73.9%
40.8%
1.6%
Response
Count
698
704
389
15
44.3%
422
46.4%
16.9%
17.0%
15.0%
7.1%
2.0%
13.5%
6.6%
If other, please
specify
442
161
162
143
68
19
129
63
89
Do you think some HIV medications can increase belly fat?
Answer Options
Yes
No
Not sure
I think HIV causes it, not the medications
Response
Percent
83.7%
0.8%
13.5%
2.0%
Response
Count
825
8
133
20
Have you experienced depression or anxiety due to the body changes?
Answer Options
Yes
No
Response
Percent
87.3%
12.7%
Response
Count
883
128
Have you ever thought of killing yourself due to your body changes?
Answer Options
Yes
No
Response
Percent
25.2%
74.8%
Response
Count
255
756
Have you ever thought about not taking your HIV medications or have you
ever stopped taking them because of fear of worsening your body changes?
Answer Options
Yes
No
Response
Percent
41.5%
58.5%
Response
Count
420
591
Response
Percent
78.2%
21.8%
Response
Count
790
220
Have you had facial wasting (lipoatrophy)?
Answer Options
Yes
No
Do you think some HIV medications can increase fat loss under the skin
(facial wasting, veiny legs/arms, fat loss in the butt)?
Response
Response
Answer Options
Percent
Count
Yes
88.6%
874
No
0.9%
9
Not sure
7.1%
70
I think HIV causes it, not the medications
3.3%
33
What option have you used to improve your facial lipoatrophy? (check all
that apply)
Answer Options
I have done nothing
I have used BioAlcamid
I have used silicone
I have used Sculptra (New Fill or polylactic acid)
I have used Radiesse
I have used PMMA in Rio, Tijuana or other
I have switched off from Zerit to Viread, Ziagen,
Epzicom or Truvada
I have switched off from AZT to Viread, Ziagen,
Epzicom, or Truvada
I have taken Uridine (Nucleomaxx)
Other
Response
Percent
39.6%
8.1%
7.2%
30.8%
4.6%
4.8%
Response
Count
337
69
61
262
39
41
32.2%
274
12.1%
103
1.3%
8.0%
11
68
Have your insurance, ADAP/Ryan White clinic, HMO, health care system (for
countries outside the US) and/or supplier patient assistance program paid
for ANY of the solution(s) mentioned in the answer(s) in the previous
question? (Check all that apply)
Answer Options
No one has. I had to pay with my own money
Yes, my insurance company has
Yes, my HMO has
Yes, my ADAP/Ryan White program has
Yes, my country's health system has
Yes, a supplier's patient assistance program has
Response
Percent
62.2%
18.6%
5.5%
7.2%
7.5%
11.5%
Response
Count
534
160
47
62
64
99
CONCLUSIONS
Despite the inherent limitations and possible biases of self selection and the limited survey population, body changes appear to take a major toll in patients' quality
of life. The majority of patients in this sample reported eroding self-image, increased isolation, and depression/anxiety and most associate these with drugs used in
the treatment of HIV disease. Disturbingly, 25% of participants had suicidal thoughts in the past due to body changes. The patients' belief that there is an
association with the treatment drugs they use may have a negative effect on patient adherence to prescribed regimens.
We suggest that more information is obtained from other patient populations via targeted outreach venues. More data on the impact of lipodystrophy on quality of
life are essential in justifying federal, estate, and foundation funding for exercise, nutritional, and wellness programs and to improve the current low rate of thirdparty reimbursement of therapies to manage body changes in HIV disease.