Internet use by family members of intensive care unit patients: an observational study
Pierre Bouju, MD1,2, Jean-Marc Tadié, MD, PhD1,2,3, Fabrice Uhel, MD1,2,3, Julien Letheulle, MD1,2, Pierre Fillatre MD1, Christophe Camus, MD, PhD1,2, Sylvain Lavoué, MD1, Yves Le Tulzo, MD, PhD1,2,3 and Arnaud Gacouin, MD1,2
1CHU Rennes, Maladies Infectieuses et Réanimation Médicale, F-35033 Rennes, France
2Université Rennes1, Faculté de Médecine, Biosit, F-35043 Rennes, France
3Inserm-CIC-1414, Faculté de Médecine, Université Rennes I, IFRI 40, F-35033 Rennes, France
Corresponding author:
Pierre Bouju,
Service des Maladies Infectieuses et Réanimation Médicale, CHU Rennes, F-35033 Rennes, France
E-mail:
Telephone: +33-2-99284248
Fax: + 33-2-99284164
Supplementary Appendix: Family questionnaire
Patient's last name:
Patient's name:
Date of birth:
Mrs, Mr,
Here is a survey to allow us to better understand why families in the intensive care units use the Internet for searches for medical information. We also want to assess the impact of Internet use on your comprehension and on the family-physician relationship. This will allow us to improve our communication with you.
We appreciate you taking the time to answer this questionnaire. Please circle the answer or, for some questions, several answers. Please also make comments at the end of the questionnaires. This questionnaire is anonymous, and the doctors in charge of your next of kin will not be aware of your answers.
Once the questionnaire is completed, please leave it with the unit's secretary.
Obviously, there is no obligation to answer this survey.
Thank you
1. You answer?
1. Alone
2. With your family
2. How old are you?
3. Are you?
1. A woman
2. A man
4. What is your employment status?
1. Student
2. Unemployed
3. Employed
4. Retired
5. Other
5. What is your next of kin's employment status?
1. Student
2. Unemployed
3. Employed
4. Retired
5. Other
6. What is your level of education?
1. Less than 9th grade
2. 9th grade
3. High school graduate
4. Bachelor’s degree
5. Higher than bachelor’s degree
7. What is your next of kin's level of education?
1. Less than 9th grade
2. 9th grade
3. High school graduate
4. Bachelor’s degree
5. Higher than bachelor’s degree
8. What is your link with the patient?
1. Spouse
2. Child
3. Parent
4. Brother or sister
5. Friend
6. Other
9. Are you the trusted by the patient?
1. Yes
2. No
3. You don't know
10. Do you have a relative who has been hospitalized in an intensive care unit?
1. Yes
2. No
11. Did you research medical information using:
1. Books or journals
2. Television
3. General practitioner
4. Another doctor
5. Paramedics
6. Other (specify)
12. Did you get the information brochure?
1. Yes
2. No
13. Did you get medical information from the intensive care unit's paramedics before the interview?
1. Yes
2. No
14. Do you have an Internet access at home?
1. Yes
2. No
15. How often do you use the Internet?
1. More than one hour per day
2. Every day but less than one hour per day
3. Once every two or three days
4. Once a week
5. Less than once a week
16. Have you ever used the Internet for medical information?
1. Yes
2. No
17. Have you used the Internet for medical information concerning the actual hospitalization or the disease of your next of kin?
1. Yes
2. No
If you answered No to the previous question, the questionnaire is over.
18. When did you use the Internet?
1. Before the first visit?
1. Yes
2. No
2. After the first visit?
1. Yes
2. No
3. Before the interview?
1. Yes
2. No
4. After the interview with the physician?
1. Yes
2. No
19. Which type of websites did you visited (specify the names)?
1. Discussion forums
2. Medical information websites
3. Patient association websites
4. Other (specify)
20. Why did you use the Internet?
1. It's natural to use the Internet currently
2. You didn't exactly understand your next of kin's situation after the interview
3. The explanations during the interview were insufficient or unclear
4. Questions arose after the interview
5. You wanted to check the explanations received during the interview
6. The explanations received by different stakeholders in the intensive care unit were not in agreement
7. Other (specify)
21. Your research on the Internet was about?
1. The diagnosis
2. The treatments given in the intensive care unit
3. The results of the examinations
4. The prognosis
5. The reputation of the intensive care unit
6. Other (specify)
22. Can you list several keywords that you put into the search engine?
23. On a scale from 0 to 10 (0 is the worst you could imagine and 10 the best), how do you rate the medical information found on the internet?
1. Clear?
0 – 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10
2. Reliable?
0 – 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10
3. Complete?
0 – 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10
24. Is the medical information found on the Internet are in agreement with that received in the intensive care unit?
1. Yes
2. No
25. If not, did you tell that to the physician?
1. Yes
2. No
26. If medical information was inconsistent, do you trust the Internet or the doctor?
1. The Internet
2. The doctor
27. After your research on the Internet:
1. Did you think you better understand your next of kin's situation?
1. Yes
2. No
2. Did you think you could better exchange views with the physician?
1. Yes
2. No
3. Did you change your trust in what the physician told you?
1. Yes
2. No
4. Did you change your trust in your next of kin's care?
1. Yes
2. No
5. Finally, you think:
1. You were better informed.
2. You were less well informed.
3. You were more anxious.
4. You were less anxious.
5. The Internet use changed nothing.
28. The use of the Internet for medical information is:
1. Unavoidable for finding additional information
2. Useless for finding additional information
3. You don't know
Thank you for your participation
Supplementary Table 1: Meeting's characteristics between visitors who made research on the Internet and those who did not.
Characteristics / All patients / Research on the Internet by visitors / p valuen = 222 / Yes n = 101 / No n = 121
Day of ICU stay at meeting (IQR) / 4 (3-5) / 4 (2-5) / 4 (3-5) / 0,22
Meeting conducted by, n (%):
A junior physician
A senior physician
Both / 98 (46)
101 (47)
16 (7) / 42 (43)
47 (49)
8 (8) / 56 (47)
54 (46)
8 (7) / 0,80
Nurse present, n (%) / 112 (52) / 50 (52) / 62 (53) / 0,88
Location, n (%)
Families' office
Patient's room
Other / 75 (35)
135 (63)
5 (2) / 40 (41)
54 (56)
3 (3) / 35 (30)
81 (69)
2 (2) / 0,14
Duration of meeting, min (IQR) / 10 (10-15) / 13 (10-20) / 10 (10-15) / 0,11
Continuous variables are reported as medians and interquartiles ranges, and categorical variables as numbers and percentages.
IQR = interquartile range (25th to 75th percentile).
Supplementary Table 2: Results of survey focused on Internet’s use by visitors.
Positive answers/respondents (%)Timing for resort to the Internet
After the first visit to the next of kin
Before the first visit to the next of kin
Before the meeting with the doctor
After the meeting with the doctor / 70/96 (73)
55/97 (57)
55/98 (56)
54/98 (55)
Kind of websites visited
Medical information websites
Discussion forums
Patient's association websites / 82/91 (90)
29/91 (32)
9/91 (10)
Reasons for resort to the Internet
It is natural to use Internet nowadays
Questions came after the interview
You wanted to check the information given during the interview
You didn't understand what was the situation of your next of kin
Explanations given during the interview were insufficient / 42/96 (44)
40/96 (42)
36/96 (37)
10/96 (10)
8/96 (8)
The research concerned
The diagnosis
The prognosis
Treatments given in ICU
Results of medical examination
The ICU environment / 71/97 (73)
61/97 (63)
15/97 (15)
8/97 (8)
3/97 (3)
Information found on the Internet was generally consistent with those given in the ICU
Yes
No / 74/87 (85)
13/87 (15)
When discrepancy between Internet and physician for information, visitor finally trusted physician / 71/72 (99)
Internet helped to better understand the next-of-kin's situation
Internet helped to better communicate with the physicians / 66/88 (75)
69/89 (78)
After research on the Internet, trust in information given by physician was:
Unchanged
More confident
Less confident
After research on the Internet, trust in the next of kin’s care was
Unchanged
More confident
Less confident
After research on the Internet, respondents considered that they were
Unchanged
Better informed
Less well informed
After research on the Internet, respondents declared they were
Unchanged
More anxious
Less anxious / 69/89 (74)
22/89 (25)
1/89 (1)
71/89 (80)
17/89 (19)
1/89 (1)
49/91 (54)
38/91 (42)
4/91 (4)
62/91 (68)
17/91 (19)
12/91 (13)
Research of medical information on the Internet is unavoidable
Research of medical information on the Internet is usefulness / 47/95 (49)
32/95 (34)
ICU = Intensive Care Unit.
Figure legends
Supplementary Figure1: Flowchart of patients and family members.
Supplementary Figure 2: Percentage distribution of clearness, reliability and completeness of the information found on the Internet as assessed by families.Evaluation was on a 0-10 response scale with 0 being «the very worst I could imagine» and 10 being «the very best I could imagine».