February 28, 2011

Peer-to-peer Health Care

Methodology

National Telephone Survey: Methodology

All numerical results in this report are based on data from telephone interviews conducted by Princeton Survey Research Associates International between August 9 and September 13, 2010, among a sample of 3,001 adults, age 18 and older.  Interviews were conducted in English and Spanish.  For results based on the total sample, one can say with 95% confidence that the error attributable to sampling is plus or minus 2.5 percentage points.  For results based on internet users (n=2,065), the margin of sampling error is plus or minus 2.9 percentage points.  In addition to sampling error, question wording and practical difficulties in conducting telephone surveys may introduce some error or bias into the findings of opinion polls.

A combination of landline and cellular random digit dial (RDD) samples was used to represent all adults in the continental United States who have access to either a landline or cellular telephone. Both samples were provided by Survey Sampling International, LLC (SSI) according to PSRAI specifications.  The landline sample for this survey was designed to generalize to the U.S. adult population and to oversample African Americans and Hispanics. To achieve these objectives in a cost effective manner, the design uses standard list-assisted random digit dialing (RDD) methodology, but telephone numbers are drawn disproportionately from telephone exchanges with higher than average density of African-American and/or Hispanic households. The cellular sample was not list-assisted, but was drawn through a systematic sampling from dedicated wireless 100-blocks and shared service 100-blocks with no directory-listed landline numbers.

New sample was released daily and was kept in the field for at least five days. The sample was released in replicates, which are representative subsamples of the larger population. This ensures that complete call procedures were followed for the entire sample.  At least 7 attempts were made to complete an interview at a sampled telephone number. The calls were staggered over times of day and days of the week to maximize the chances of making contact with a potential respondent. Each number received at least one daytime call in an attempt to find someone available. For the landline sample, half of the time interviewers first asked to speak with the youngest adult male currently at home. If no male was at home at the time of the call, interviewers asked to speak with the youngest adult female. For the other half of the contacts interviewers first asked to speak with the youngest adult female currently at home. If no female was available, interviewers asked to speak with the youngest adult male at home. For the cellular sample, interviews were conducted with the person who answered the phone. Interviewers verified that the person was an adult and in a safe place before administering the survey. Cellular sample respondents were offered a post-paid cash incentive for their participation. All interviews completed on any given day were considered to be the final sample for that day.

Disproportionate sampling and non-response in telephone interviews can produce biases in survey-derived estimates. The dataset was weighted in two stages.  The first stage of weighting corrected for the disproportionate landline sample design and also accounted for the overlapping landline and cellular sample frames as well as different probabilities of selection associated with the number of adults in the household. The second stage of weighting matched overall sample demographics to population parameters. The demographic weighting parameters are derived from a special analysis of the most recently available Census Bureau’s March 2009 Annual Social and Economic Supplement. This analysis produces population parameters for the demographic characteristics of adults age 18 or older. These parameters are then compared with the sample characteristics to construct sample weights. The weights are derived using an iterative technique that simultaneously balances the distribution of all weighting parameters.

The response rate for the landline sample was 13.6 percent. The response rate for the cellular sample was 17.0 percent.

National Telephone Survey: Questions

Q6ab       Do you use the internet, at least occasionally? Do you send or receive email, at least occasionally?

            CURRENT               

%             74            Yes

            26            No

            *              Don’t know

            *              Refused

Q17         Are you now living with any of the following health problems or conditions…?

Q17        

Yes

No

Don’t know

Refused

a.        Diabetes or sugar diabetes

Current

11

89

*

*

b.        High blood pressure

Current

24

75

1

*

c.        Asthma, bronchitis, emphysema, or other lung conditions

Current

12

88

*

*

d.        Heart disease, heart failure or heart attack

Current

6

94

*

*

e.        Cancer

Current

2

97

*

*

f.         Any other chronic health problem or condition I haven’t already mentioned

Current

17

82

*

1

 

Q18         In the last 12 months, have you personally faced a serious medical emergency or crisis?

Current

%

12

Yes

 

88

No

 

*

Don’t know

 

*

Refused

Q20         Is there anyone close to you who has a CHRONIC medical condition, such as asthma, diabetes, heart disease, high blood pressure, cancer, or another chronic condition?

Current

Dec 2008[1]

%

47

Yes

49

 

53

No

50

 

*

Don’t know

*

 

*

Refused

1

 

Q21         In the last 12 months, has anyone close to you faced a serious medical emergency or crisis?

Current

%

27

Yes

 

72

No

 

*

Don’t know

 

*

Refused

 

Q24         Apart from looking for information online, there are many different activities related to health and medical issues a person might do on the internet.  I’m going to read a list of online health-related activities you may or may not have done.  Have you…

YES

NO

Don’t know

Refused

d. Gone online to find others who might have health concerns similar to yours

Current internet users

18

82

0

*

 

Q30         Thinking about the LAST time you had a health issue, did you get information, care or support from… [INSERT; RANDOMIZE]? [IF YES AND INTERNET USER: Did you interact with them ONLINE through the internet or email, OFFLINE by visiting them in person or talking on the phone, or BOTH online and offline?]

Yes, online

Yes, offline

Yes, both

No, not a source

Don’t know

Refused

a.        A doctor or other health care professional

1

65

4

29

*

*

b.        Friends and family

1

41

12

44

1

*

c.        Others who have the same health condition

1

15

4

77

2

*

 

Q32         Overall, who do you think is more helpful when you need… [INSERT FIRST ITEM] – health professionals like doctors and nurses, OR other sources, such as fellow patients, friends and family?  And who is more helpful when you need… [INSERT NEXT ITEM; RANDOMIZE]?  READ AS NECESSARY: Professional sources like doctors and nurses, OR other sources, such as fellow patients, friends and family?

PRO-FESSIONALS

OTHER SOURCES

(VOL.) BOTH EQUALLY

Don’t know

Refused

a.        An accurate medical diagnosis

91

5

2

2

*

b.        Emotional support in dealing with a health issue

30

59

5

4

2

c.        Practical advice for coping with day-to-day health situations

43

46

6

3

1

d.        Information about alternative treatments

63

24

5

6

1

e.        Information about prescription drugs

85

9

3

3

1

f.         A quick remedy for an everyday health issue

41

51

4

3

1

g.        A recommendation for a doctor or specialist

62

27

6

4

1

h.        A recommendation for a hospital or other medical facility

62

27

6

4

1

 

CARE2     In the past 12 months, have you provided UNPAID care to an adult relative or friend 18 years or older to help them take care of themselves?  Unpaid care may include help with personal needs or household chores. It might be managing a person’s finances, arranging for outside services, or visiting regularly to see how they are doing. This person need not live with you.

[IF RESPONDENT ASKS DOES GIVING MONEY COUNT:] Aside from giving money, do you provide any other type of unpaid care to help them take care of themselves, such as help with personal needs, household chores, arranging for outside services, or other things?

            CURRENT               

%             27            Yes

            72            No

            *              Don’t know

            *              Refused

CARE3     Do you provide this type of care to just one adult, or do you care for more than one adult?

Based on those who provide unpaid care to adults [N=790]

            CURRENT               

%             66            One adult only

            33            Provide care to multiple adults

            *              Don’t know

            *              Refused

CARE4     Is this person a parent of yours, or not?

CARE5     Are any of the adults you care for a parent of yours, or not?

Based on those who provide unpaid care to adults [N=790]

            CURRENT               

%             38            Yes, parent

            62            No, not a parent

            *              Don’t know

            *              Refused

CARE6     In the past 12 months, have you provided UNPAID care to any CHILD under the age of 18 because of a medical, behavioral, or other condition or disability?  This could include care for ongoing medical conditions or serious short-term conditions, emotional or behavioral problems, or developmental problems, including mental retardation.

            CURRENT               

%             5              Yes

            94            No

            *              Don’t know

            *              Refused




[1] In December 2008, question wording was “Is there anyone close to you who has a CHRONIC medical condition, such as asthma, diabetes, heart disease, high blood pressure, or cancer?”

Online Survey: Methodology

The Pew Internet Project adapted questions from our national telephone survey, in consultation with Princeton Survey Research Associates International (PSRAI) and the National Organization for Rare Disorders (NORD). In December 2010, NORD sent invitations to 721 patient organizations, asking them to notify members, as well as 212 individuals who had signed up as “Rare Disease Day Ambassadors.” The total number of individuals who were invited to participate in the survey is not known. Since the data are based on a non-random sample of 2,156 internet users, a margin of error cannot be computed, and the results are not projectable to any population other than the internet users in this sample.

Online Survey: Questions

1. What rare disease or condition affects you or a loved one? [OPEN-END]

            CURRENT               

%             99            Gave response

            1              No answer

2. Are you the patient or is the patient a loved one?

            CURRENT               

%             50            I’m the patient

            36            Patient is a loved one

            6              Both

            9              No answer

What is your relationship to the patient? (If more than one loved one with a rare disease or condition, please select all that apply)

Based on those who have a loved one with a rare disease or condition [N=888]

            CURRENT               

%             50            Parent of patient

            22            Spouse/partner

            17            Child of patient

            7              Sibling

            9              Other family member

            2              Friend

            3              Other (Specify)

            4              No answer

Note: Total may exceed 100% due to multiple responses.

Many times when people get sick, their family, friends and even more distant acquaintances come together to provide a kind of care network. Did this happen in your case? Who was in the network and what roles did they play in providing care? Please share any details that come to mind. [OPEN-END]

            CURRENT               

%             80            Gave response

            20            No answer

3. How long did it take you or your loved one to get a diagnosis?

            CURRENT               

%             50            Within 1 year

            15            1-3 years

            5              3-5 years

            9              5+ years

            11            Other

            10            No answer

Please explain further if you would like. [OPEN-END]

            CURRENT               

%             60            Gave response

            40            No answer

4. If you wish, please tell us how you found out about this condition. Was the diagnosis process difficult? What did you learn that you would share with someone facing a similar situation? [OPEN-END]

            CURRENT               

%             77            Gave response

            23            No answer

5.             Is there a treatment for the rare disease that affects you or your loved one?

            CURRENT               

%             52            Yes

            28            No

            20            No answer

If you would like, please give us some information about your search for treatments. Has it been pretty easy or pretty difficult? And how about the treatments themselves? How are they going? Did your care network play a role in finding the treatments or helping administer them? [OPEN-END]

            CURRENT               

%             69            Gave response

            31            No answer

6. Is there a research center or clinician working on a possible treatment for the disease that affects you or your loved one?

            CURRENT               

%             61            Yes

            16            No

            23            No answer

Please explain further if you would like. [OPEN-END]

            CURRENT               

%             52            Gave response

            48            No answer

7. Have you used the internet to find clinical trials?

            CURRENT               

%             40            Yes

            40            No

            20            No answer

So others might benefit from your experience, please list any websites or resources you have used to look for clinical trials. [OPEN-END]

            CURRENT               

%             37            Gave response

            63            No answer

8.  Thinking about health-related activities you may or may not do online, have you…

YES

NO

No answer

a.        Consulted online rankings or reviews of doctors or other providers

42

38

20

b.        Consulted online rankings or reviews of hospitals or other medical facilities

44

36

20

c.        Consulted online reviews of particular drugs or medical treatments

60

21

20

d.        Posted a review online of a doctor

11

68

21

e.        Posted a review online of a hospital

7

72

21

f.         Posted your experiences with a particular drug or medical treatment online

20

59

21

What other health-related online activities do you find useful? Please share anything that comes to mind. [OPEN-END]

            CURRENT               

%             37            Gave response

            63            No answer

9. Thinking about the last time you had a health issue, did you get information, care or support from any of the following? If so, please tell us if you interacted with them ONLINE through the internet or email, OFFLINE by visiting them in person or talking on the phone, or BOTH online and offline.

Yes, online

Yes, offline

Yes, both

No, didn’t use this source

No answer

a.        A doctor or other health care professional

4

39

26

10

22

b.        Friends and family

5

20

33

18

25

c.        Others who have the same health condition

23

8

23

22

24

Please explain further if you would like. [OPEN-END]

            CURRENT               

%             15            Gave response

            85            No answer

10. Overall, who do you think is more helpful when you need each of the following kinds of information or advice – health professionals like doctors and nurses, OR other sources, such as fellow patients, friends and family?

Professional sources are more helpful

Other sources are more helpful

Both equally helpful

No answer

a.        An accurate medical diagnosis

62

2

15

22

b.        Emotional support in dealing with a health issue

5

40

32

23

c.        Practical advice for coping with day-to-day health situations

10

33

34

23

d.        Information about alternative treatments

22

24

28

26

e.        Information about prescription drugs

44

7

26

23

f.         A quick remedy for an everyday health issue

19

25

31

25

g.        A recommendation for a doctor or specialist

29

10

37

23

h.        A recommendation for a hospital or other medical facility

29

10

38

24

We are especially interested in any stories you can tell related to this question. Please share your experiences and insights. [OPEN-END]

            CURRENT               

%             24            Gave response

            76            No answer