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	*

[INSERT; RANDOMIZE]

	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	*

[INSERT FIRST ITEM]

	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:]

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?

[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?

[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

[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)

[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.

[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

[OPEN-END]

CURRENT

% 60 Gave response

40 No answer

[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

[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

[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

[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

[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

[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