QUESTIONNAIRE FOR PEOPLE WITH LIVED EXPERIENCE OF HIV AND CHRONIC PAIN.
Researcher: Jessica Robinson-Papp, MD Icahn School of Medicine at Mount Sinai 1 Gustave L. Levy Place, Box 1052 New York, NY 10029 212-241-0190
paired.project@mssm.edu
The Global HIV Pain Task Force is a group of researchers from the US, UK, Canada and South Africa who study chronic pain and ways to better manage it among people living with HIV. In the summer of 2019, we participated in a survey and focus group to establish research priorities in this area. We came up with many ideas and the top 7 research goals are listed in this questionnaire. We are now seeking the input of people with lived experience of HIV and chronic pain. The purpose of this research study is to see if you agree that these are important research goals, if there are other important areas that we missed, and how you would rank the importance of these research goals. This information will be used to help us plan the research studies that we focus on. You are being asked to take part in a research study because you are someone with HIV and chronic pain. Being in a research study is completely voluntary. You can choose not to be in this research study. You can also say yes now, and change your mind later. If you agree to take part in this research, you will be asked to complete the questionnaire below. Your participation in this study will take about 15 minutes. We expect that 1,000 people will take part in this research study. You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey at any time. You must be at least 18 years old to participate. If you are younger than 18 years old, please stop now. The possible risks to you in taking part in this research are: • feeling uncomfortable, or increased awareness of your pain • the potential loss of confidentiality of data.
The possible benefits to you for taking part in this research are: • Helping researchers design studies for chronic pain in HIV disease
To protect your identity as a research subject no identifiable information will be collected. If you have any questions about this research, please contact the Researcher at 212-241-8390. You can also call the Program for the Protection of Human Subjects Office at 212-824-8200.
2.9 Please use the space to add any other areas of research that are important to you but were not mentioned above.
18-29 years 30-39 years 40-49 years 50-59 years 60-69 years 70-79 years 80-89 years >89 years Prefer not to say
3.2 How long ago were you diagnosed with HIV?
< 1 year 1-5 years 6-10 years 10-15 years 16-20 years 20-25 years 25-30 years > 30 years Prefer not to say Not sure
3.3 Do you consider yourself a part of the lesbian, gay, bisexual, transgender, queer (LGBTQ) community?
Yes
No
Prefer not to say
3.4 How would you describe your gender?
Male Female Non-binary/third gender Prefer to self-describe Prefer not to say
3.5 Do you identify as transgender?
Yes
No
Prefer not to say
Africa
Asia
Australia or New Zealand
Europe
Latin America
Middle East
North America (U.S and Canada)
Prefer not to say
3.6a Please indicate the region of North America where you live.
Canada U.S. Northeast U.S. Southeast U.S. Midwest U.S. Southwest U.S. West
3.7 How would you describe your race/ethnicity (choose as many as apply)?
3.8 Which category best describes your employment status?
Employed full time
Employed part time
Unemployed
Disabled/unable to work
Retired
Student
Homemaker
4.2 How long have you been in pain?
Less than 6 months 6-12 months 1-5 years 6-10 years > 10 years
4.3 How much bodily pain have you had during the last week?
None
Very mild
Mild
Moderate
Severe
Very Severe
4.4 Check everywhere you have had pain for at least 3 months.
4.5 What number best describes your pain on average in the past week? (0-10)
0 1 2 3 4 5 6 7 8 9 10
4.6 What number best describes how, during the past week, pain has interfered with your general activity (0-10).
* must provide value
0 1 2 3 4 5 6 7 8 9 10
4.7 What number best describes how, during the past week, pain interfered with your enjoyment of life? (0-10)
* must provide value
0 1 2 3 4 5 6 7 8 9 10
4.8 Have you been diagnosed with any of these pain conditions (check all that apply)?
4.9 What number best describes how, during the past week, pain has interfered with your sleep? (0-10)
* must provide value
0 1 2 3 4 5 6 7 8 9 10
4.10 Do you have access to the following resources for your pain (check all that apply)?
5.1 Prescription opioid medications (e.g. Codeine, hydrocodone, morphine)
I use this now
I used this in the past, but not now
I have never used this
5.1a Please indicate the effect of opioid medications on your pain (e.g. Codeine, hydrocodone, morphine).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.2 Prescription medications other than opioids (e.g. gabapentin, steroids)
I use this now
I used this in the past, but not now
I have never used this
5.2a Please indicate the effect of Prescription medications other than opioids on your pain (e.g. gabapentin, steroids).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.3. Topical medications (e.g. lidocaine or capsaicin cream)
I use this now
I used this in the past, but not now
I have never used this
5.3a Please indicate the effect of topical medications on your pain (e.g. lidocaine or capsaicin cream).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.4. Interventional treatments (e.g. injections, procedures or surgery)
I use this now
I used this in the past, but not now
I have never used this
5.4a Please indicate the effect of interventional treatments on your pain (e.g. injections, procedures or surgery).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.5. Over the counter pain medications (e.g. acetaminophen/paracetamol, ibuprofen)
I use this now
I used this in the past, but not now
I have never used this
5.5a Please indicate the effect of over the counter pain medications on your pain (e.g. acetaminophen/paracetamol, ibuprofen).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.6 Medical cannabis/marijuana, including CBD (i.e. have prescription)
I use this now
I used this in the past, but not now
I have never used this
5.6a Please indicate the effect of medical cannabis/marijuana including CBD on your pain (i.e. have prescription).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.7 Non-medical cannabis/marijuana, including CBD (i.e. with prescription)
I use this now
I used this in the past, but not now
I have never used this
5.7a Please indicate the effect of non-medical cannabis/marijuana, including CBD on your pain (with prescription).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.8 Other herbal treatments, supplements or vitamins.
I use this now
I used this in the past, but not now
I have never used this
5.8a Please indicate the effect of other herbal treatments, supplements or vitamins on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.9 Mental health services.
I use this now
I used this in the past, but not now
I have never used this
5.9a Please indicate the effect of mental health services on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.10 On-line or app-based treatments.
I use this now
I used this in the past, but not now
I have never used this
5.10a Please indicate the effect of online or app-based treatments on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
I use this now
I used this in the past, but not now
I have never used this
5.11a Please indicate the effect of peer support on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.12 Cognitive Behavioral Therapy (a kind of talk therapy).
I use this now
I used this in the past, but not now
I have never used this
5.12a Please indicate the effect of Cognitive Behavioral Therapy on your pain(a kind of talk therapy).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.13 Physiotherapy (physical therapy, PT).
I use this now
I used this in the past, but not now
I have never used this
5.13a Please indicate the effect of Physiotherapy on your pain (physical therapy, PT).
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.14 Occupational therapy (OT).
I use this now
I used this in the past, but not now
I have never used this
5.14a Please indicate the effect of Occupational therapy (OT) on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
I use this now
I used this in the past, but not now
I have never used this
5.15a Please indicate the effect of Massage therapy on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
I use this now
I used this in the past, but not now
I have never used this
5.16a Please indicate the effect of Chiropractor on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.17 Meditations and mindfulness
I use this now
I used this in the past, but not now
I have never used this
5.17a Please indicate the effect of meditation and mindfulness on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
I use this now
I used this in the past, but not now
I have never used this
5.18a Please indicate the effect of Acupuncture on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
I use this now
I used this in the past, but not now
I have never used this
5.19a. Please indicate the effect of Yoga on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
I use this now
I used this in the past, but not now
I have never used this
5.20a. Please indicate the effect of Exercise on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.21 I use recreational substances (e.g. alcohol, meth, cocaine, etc.) to treat my pain.
I use this now
I used this in the past, but not now
I have never used this
5.21a Please indicate the effect of recreational substances (e.g. alcohol, meth, cocaine, etc.) on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
5.22 I use food (e.g. caffeine, sugar) to treat my pain.
I use this now
I used this in the past, but not now
I have never used this
5.22a Please indicate the effect of food (e.g. caffeine, sugar) on your pain.
I don't remember
Very much improved
Much improved
Minimally improved
No change
Minimally worse
Much worse
Very much worse
6.1 Felling nervous anxious or on edge.
Not at all
Several days
More than half the days
Nearly every day
6.2 Not being able to stop or control worrying.
Not at all
Several days
More than half the days
Nearly every day
6.3 Little interest or pleasure in doing things?
Not at all
Several days
More than half the days
Nearly every day
6.4 Feeling down, depressed or hopeless?
Not at all
Several days
More than half the days
Nearly every day
We would greatly appreciate it if you could pass the link for the survey on to friends and people in your social networks.