Focus Group Assessment

Form Approved

OMB No. 0920-0840

Expiration Date 02/29/2016

“Informing the Development of Mobile Apps for HIV Prevention, Treatment, & Care”

2i. Focus Group Assessment #1 – English

Public reporting burden of this collection of information is estimated to average 30 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; Attn: OMB-PRA (0920-0840)

1. Demographic Questionnaire

Age: ____

Gender:

• Male

• Female

• Transgender male to female

• Transgender female to male

• Decline to state

Ethnicity:

• Hispanic

• Non-Hispanic

• Decline to state

What is your race: (check all that apply)

• American Indian or Alaskan Native

• Asian

• Black or African American

• Native Hawaiian or Pacific Islander

• White

How often do you use a desktop or laptop computer?

• Several times every day

• Once a day

• Several times per week

• Several times per month

• Once a month or less often

• Never

When did you start using a desktop or laptop computer?

• In the past six months

• In the past year

• In the past two years

• More than two years

How often do you use a mobile device (e.g. Smartphone)? ******Does this also include tablets?

• Several times every day

• Once a day

• Several times per week

• Several times per month

• Once a month or less often

• Never

When did you start using a mobile device (e.g. Smartphone)? *******Does this also include tablets?

• In the past six months

• In the past year

• In the past two years

• More than two years

Which type of mobile device do you use most frequently?

• Android phone

• iPhone

• WebOs Phone (***Please provide example)

• Tablet (e.g. ipad)

• Netbook

Which of the following types of apps do you use (check all that apply):

1. Location-Based Tools (GPS)

2. Sharing Data with HealthCare Providers

3. Sharing Data with Personal Connections (Family, Loved Ones)

4. Motivational Messaging

5. Adherence Progress Tracking

6. App Locking (Password Protection)

7. Mood Tracking (Journaling)

8. Personal Notes (For reflection, correlation, Identifying behavior triggers)

9. Side Effect Tracking

10. Educational Information Repository

11. Peer Support

Which of the above identified apps do you use most frequently?

2. HIV Medical History

1. Have you ever received medical care for your HIV?

No

Yes

Don’t Know

IF YES,

2. How long ago did you first receive care for your HIV?

______ years ______ months ago

Don’t know

3. What is the lowest CD4 cell count you have ever had?

Less than 200 cells/mm³

Between 200 and 349 cells/mm³

Between 350 and 499 cells/mm³

500 cells/mm³ or higher

Never tested

Don’t know

4. Have you ever been diagnosed with AIDS?

No

Yes

Don’t Know

IF YES,

5. When were you first diagnosed with AIDS?

_ _ / _ _ _ _ (mm / yyyy)

Don’t Know

Engagement with Healthcare Provider

Your primary health care provider is probably your doctor. However, your health care provider might also be a nurse, nurse practitioner or physician’s assistant.

Please check the type of health care provider that you see on a regular basis and then complete this page with that person in mind.

My primary health care provider is (please check one):

____ Doctor

____ Nurse

____ Nurse Practitioner

____ Physician Assistant

____ Other, please describe:____________________________

Please rate the degree to which each statement is true for you:

1= Always 2= Usually 3=Sometimes 4= Never n/a= no experience

Always Usually Sometimes Never No Experience My health care provider:

1 2 3 4 n/a Listens to me

1 2 3 4 n/a Cares about me

1 2 3 4 n/a Answers my questions

1 2 3 4 n/a Spends enough time with me

1 2 3 4 n/a Involves me in decisions

1 2 3 4 n/a Respects my choices

1 2 3 4 n/a Deals with my problems

1 2 3 4 n/a Engages me in my care

1 2 3 4 n/a Is helpful to me

1 2 3 4 n/a Respects me

1 2 3 4 n/a Supports my decisions

1 2 3 4 n/a Sees me when I ask

1 2 3 4 n/a Provides me with information

3. Information Privacy Concerns

ENS (adapated from Whiddett et al., Patients' attitudes towards sharing their health information. International Journal of Medical Informatics. 2006;75:530-541.)

This first set of questions is about sharing your personal health information using a secure electronic network. Personal health information means information about your health and the care that you received and also information that tells people who you are (such as your name, address, social security number, medical record number). Please indicate how much you agree or disagree with each of the following statements.

I am willing to allow my personal health information to be shared with:	Strongly agree	Agree	Neither agree nor disagree	Disagree	Strongly disagree
a1. … my primary HIV care provider (e.g., physician, NP, PA) using a secure electronic network.	1	2	3	4	5
b1. … other clinicians in the clinic of my primary HIV care provider (e.g. nurses, medical assistants) using a secure electronic network.	1	2	3	4	5
c1. … other non-clinical staff in the clinic of my primary HIV care provider (e.g. receptionist/manager) using a secure electronic network.	1	2	3	4	5
d1. … non-HIV specialists (e.g. cardiologists (heart doctors), ob/gyn (doctor for women)) using a secure electronic network.	1	2	3	4	5
e1. … other health care providers (e.g. emergency or hospital personnel) using a secure electronic network.	1	2	3	4	5
f1. … pharmacists using a secure electronic network.	1	2	3	4	5
g1. … other HIV support service organizations (e.g., case managers) using a secure electronic network.	1	2	3	4	5
h1. … other (non HIV-specific) support service organizations (e.g., drug treatment programs, mental health services) using a secure electronic network.	1	2	3	4	5
i1. … private health insurers using a secure electronic network.	1	2	3	4	5
j1. … government health insurers (Ryan White funding; ADAP; Medicare; Medicaid) using a secure electronic network.	1	2	3	4	5
k1. … the local health department using a secure electronic network.	1	2	3	4	5

The next set of questions is about sharing your personal health information using a traditional paper medical record. Again, personal health information means information about your health and the care that you received and also information that tells people who you are (such as your name, address, social security number, medical record number). Please indicate how much you agree or disagree with each of the following statements.

I am willing to allow my personal health information to be shared with:	Strongly agree	Agree	Neither agree nor disagree	Disagree	Strongly disagree
a2. … my primary HIV care provider (e.g., physician, NP, PA) using a traditional paper medical record.	1	2	3	4	5
b2… other clinicians in the clinic of my primary HIV care provider (e.g. nurses, medical assistants) using a traditional paper medical record.	1	2	3	4	5
c2…other non-clinical staff in the clinic of my primary HIV care provider (e.g. receptionist/manager) using a traditional paper medical record.	1	2	3	4	5
d2. … non-HIV specialists (e.g. cardiologists (heart doctors), ob/gyn (doctor for women)) using a traditional paper medical record.	1	2	3	4	5
e2. … other health care providers (e.g. emergency or hospital personnel) using a traditional paper medical record.	1	2	3	4	5
f2. … pharmacists using a traditional paper medical record.	1	2	3	4	5
g2. … other HIV support service organizations (e.g., case managers) using a traditional paper medical record.	1	2	3	4	5
h2. … other (non HIV-specific) support service organizations (e.g., drug treatment programs, mental health services) using a traditional paper medical record.	1	2	3	4	5
i2. … private health insurers using a traditional paper medical record.	1	2	3	4	5
j2. … government health insurers (Ryan White funding; ADAP; Medicare; Medicaid) using a traditional paper medical record.	1	2	3	4	5
k2. … the local health department using a traditional paper medical record.	1	2	3	4	5

For the next four questions, please consider your comfort at sharing limited health information. Limited health information would include information about your health and the care that you received, but would NOT include details that would allow a person to know that information was about you specifically. (For example, it would not include things like your name, address, social security number, etc.)

I am willing to allow limited personal health information about me to be shared with:	Strongly agree	Agree	Neither agree nor disagree	Disagree	Strongly disagree
l1. the local health department using a secure electronic network.	1	2	3	4	5
l2. the local health department using a traditional paper medical record.	1	2	3	4	5
m1. researchers using a secure electronic network.	1	2	3	4	5
m2. researchers using a traditional paper medical record.	1	2	3	4	5

4. Short Form of Internalized HIV Stigma Measure (alpha = 0.86)

	None of the time	A little of the time	Some of the time	Most of the time	All of the time
Society looks down on people who have HIV.	1	2	3	4	5
People blame me for having HIV.	1	2	3	4	5
Medical providers assume people with HIV sleep around.	1	2	3	4	5
People think you can’t be a good parent if you have HIV.	1	2	3	4	5
People treat me as less than human now that I have HIV.	1	2	3	4	5
I am concerned that, if I go to an AIDS organization, someone I know might see me.	1	2	3	4	5
I am concerned that, if I am sick, people I know will find out that I have HIV.	1	2	3	4	5
People I am close to are afraid they will catch HIV from me.	1	2	3	4	5
I feel like I am an outsider because I have HIV.	1	2	3	4	5
I feel ashamed to tell other people that I have HIV.	1	2	3	4	5
My family is comfortable talking about my HIV.	1	2	3	4	5
It is important for a person to keep HIV a secret from co-workers.	1	2	3	4	5

5. SF-12® Patient Questionnaire

Patient Name ___________________________ Date of Birth: ________________

SF-12®: This information will help your doctors keep track of how you feel and how well you are able to do your usual activities. Answer every question by placing a check mark on the line in front of the appropriate answer. If you are unsure about how to answer a question, please give the best answer you can.

1. In general, would you say your health is: _____ Excellent (1) _____ Very Good (2) _____ Good (3) _____ Fair (4) _____ Poor (5) The following two questions are about activities you might do during a typical day. Does YOUR HEALTH NOW LIMIT YOU in these activities? If so, how much?

2. MODERATE ACTIVITIES, such as moving a table, bowling, playing golf, etc…: _____ Yes, Limited A Lot (1) _____ Yes, Limited A Little (2) _____ No, Not Limited At All (3)

3. Climbing SEVERAL flights of stairs: _____ Yes, Limited A Lot (1) _____ Yes, Limited A Little (2) _____ No, Not Limited At All (3) During the PAST 4 WEEKS have you had any of the following problems with your work or other regular activities AS A RESULT OF YOUR PHYSICAL HEALTH?

4. ACCOMPLISHED LESS than you would like: _____ Yes (1) _____ No (2)

5. Were limited in the KIND of work or other activities: _____ Yes (1) _____ No (2) During the PAST 4 WEEKS, were you limited in the kind of work you do or other regular activities AS A RESULT OF ANY EMOTIONAL PROBLEMS (such as feeling depressed or anxious)?

6. ACCOMPLISHED LESS than you would like: _____ Yes (1) _____ No (2)

7. Didn’t do work or other activities as CAREFULLY as usual: _____ Yes (1) _____ No (2)

8. During the PAST 4 WEEKS, how much did PAIN interfere with your normal work (including both work outside the home and housework)? _____ Not At All (1) _____ A Little Bit (2) _____ Moderately (3) _____ Quite A Bit (4) _____ Extremely (5)

The next three questions are about how you feel and how things have been DURING THE PAST 4 WEEKS. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the PAST 4 WEEKS –

9. Have you felt calm and peaceful? _____ All of the Time (1) _____ Most of the Time (2) _____ A Good Bit of the Time (3) _____ Some of the Time (4) _____ A Little of the Time (5) _____ None of the Time (6)

10. Did you have a lot of energy? _____ All of the Time (1) _____ Most of the Time (2) _____ A Good Bit of the Time (3) _____ Some of the Time (4) _____ A Little of the Time (5) _____ None of the Time (6)

11. Have you felt downhearted and blue? _____ All of the Time (1) _____ Most of the Time (2) _____ A Good Bit of the Time (3) _____ Some of the Time (4) _____ A Little of the Time (5) _____ None of the Time (6)

12. During the PAST 4 WEEKS, how much of the time has your PHYSICAL HEALTH OR EMOTIONAL PROBLEMS interfered with your social activities (like visiting with

friends, relatives, etc.)? _____ All of the Time (1) _____ Most of the Time (2) _____ A Good Bit of the Time (3) _____ Some of the Time (4) _____ A Little of the Time (5) _____ None of the Time (6)

SF­12® Health Survey © 1994, 2002 by Medical Outcomes Trust and QualityMetric Incorporated. All Rights Reserved SF­12® is a registered trademark of Medical Outcomes Trust