Neurofibromatosis Social Media Trends
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Transcript of Neurofibromatosis Social Media Trends
Neurofibromatosis Social Media TrendsFebruary 2013
Unauthorized use, redistribution and reproduction are strictly prohibited without express written permission from Manhattan Research, LLC
Copyright © 2013 Manhattan Research, LLC. All rights reserved.
A study from:
COMPANY CONFIDENTIALAbout Neurofibromatosis
About Neurofibromatosis
Neurofibromatosis (NF) is an incurable genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. NF is one of the most common genetic disorders in the United States, affecting more than 100,000 Americans.
About the studyAbout the study
Healthcare market research and strategic advisory firm Manhattan Research, and online patient community network Inspire, in alliance with patient advocacy organization Neurofibromatosis Network, partnered on a study to explore the role of social media in the lives of neurofibromatosis patient and caregivers.
The study was conducted online among 161 patients and 57 caregivers from the Inspire/Neurofibromatosis Network’s Support Community(http://www.inspire.com/groups/neurofibromatosis-network/) in Q2 2012.
Neurofibromatosis Social Media TrendsResearch Methodology and Info on Neurofibromatosis
3
Source: Neurofibromatosis Social Media Trends
Which best describes you?
Overview of Surveyed Respondents
I have neurofibromatosis
I care for someone with neurofibromatosis
74%
26%
What is your gender?
NF Patients NF Caregivers
70%
89%
29%
11%
MaleFemale
N/A - 1%
4
Under 18
19 to 24
25 to 34
35 to 44
45 to 54
55 to 64
65 or older
1%
8%
25%
15%
25%
20%
2%
Source: Neurofibromatosis Social Media Trends
What is your age? How severe is your neurofibromatosis, or that of the person you care for?
Overview of Surveyed Respondents
NF Patients
12%
14%
49%
24%
MildModerateSevereNot sure
N/A - 1%N/A - 4%
5
Source: Neurofibromatosis Social Media Trends
NF Patients Use NF-related Social Media for Info Gathering More than Emotional Support
Which of the following reasons describe why you use online communities, social networks, message boards, or blogs related to neurofibromatosis?
I wanted to read how others have managed a condition or treatment regimen
I think others can give me tips and ideas I cannot find elsewhere
I wanted to find differing opinions about a health issue or treatment option
I wanted to connect with others for emotional support
I wanted to see how other people rate or review a prescription drug
I came across these websites when I am using a search engine
Other
63%
52%
47%
44%
22%
17%
7%
“We can share the research we each have been doing in our search for a cure for NF. Even if such cure has not been found yet, the fact that there are so many of us with NF that are not willing to give up in this search is encouraging!”- Female NF Patient, 55
6
Source: Neurofibromatosis Social Media Trends
Patients with Moderate-to-severe NF Use Community for Wide Variety of Reasons; Much More Likely to Seek Others’ Opinions on Rx drugs
Which of the following reasons describe why you use online communities, social networks, message boards, or blogs related to neurofibromatosis?
I wanted to read how others have managed a condition or treatment regimen
I think others can give me tips and ideas I cannot find elsewhere
I wanted to find differing opinions about a health issue or treatment option
I wanted to connect with others for emotional support
I wanted to see how other people rate or review a prescription drug
I came across these websites when I am using a search engine
Other
69%
57%
52%
50%
30%
18%
9%
47%
29%
32%
29%
5%
24%
5%
Mild NF Patients**Mod-sev NF Patients*
* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.** Patients who have been diagnosed with mild neurofibromatosis.
7
Source: Neurofibromatosis Social Media Trends
Take them to medical appointments
Look up information and resources for their support
Track their condition and/or medical data
Make sure they are taking their medication(s), as applicable, according to doctors recommendations
Other
93%
91%
88%
60%
26%
Which of the following things do you do for the person you care for who has neurofibromatosis?
Caregivers Fully Engaged in Supporting The Person They Care for
Among caregivers
“I use these sites, such as Mayo Clinic, to keep informed about clinical trials, drugs, and supplements of interest. I also look to see what, as situations evolve, we might expect in terms of our son's prognosis.”- Female NF Caregiver, 38
8
Source: Neurofibromatosis Social Media Trends
Search engine
General health website
Patient advocacy website
Government website
Clinic or hospital website - local or national
Disease or condition website
Health channel of portal website
Health section of news website
Health insurance website
Prescription drug website
Pharmacy website
Pharmaceutical corporate website
Other
None of the above
46%
28%
25%
19%
19%
17%
5%
4%
4%
3%
2%
1%
4%
20%
Which of the following types of websites did you visit for health and treatment information related to neurofibromatosis in the past 12 months?
Search, General Health Sites, And Patient Advocacy Sites Lead Online Sources of NF Info for NF Patients
“Online communities show me what others are going through, they help keep me updated on current NF1 topics, and also provide a place for me to release my feelings with like-minded people.”- Male NF1 Patient, 28
9
Nearly All NF Patients Surveyed Belong to at Least One NF Online Community; Only Three-quarters Use Them Regularly
Source: Neurofibromatosis Social Media Trends
How many online communities or networks do you belong to for information and support related to neurofibromatosis?
NF Patients
41%
55%
One
Two or more
How many online communities or networks do you regularly use (e.g., visit at least several times per month) for information and support related to neurofibromatosis?
NF Patients
31%
41%
24%
NoneOneTwo or more
N/A - 4%N/A - 4%
10
Source: Neurofibromatosis Social Media Trends
More than Half of NF Patients Use NF-related Social Media at Least Once per Week
How often do you use online communities, social networks, message boards, or blogs for information and support related to neurofibromatosis?
Several times per day
About once a day
Several times per week
About once per week
A few times a month
About once per month
A few times per year
About once per year
Never
13%
18%
11%
11%
20%
4%
12%
2%
5%
“Having contact with other people that have a rare disorder like NF2 gets one out of isolation. I don't know anyone in my area that has NF2. Now I virtually know many others who have similar problems and experiences.”- Female NF Patient, 49
11
Several times per day
About once a day
Several times per week
About once per week
A few times a month
About once per month
A few times per year
About once per year
Never
13%
10%
11%
15%
26%
5%
11%
3%
6%
14%
27%
12%
8%
16%
3%
13%
3%
4%
NF Patients 45+
NF Patients <44
At least weekly
Patients 45+: 61%
Source: Neurofibromatosis Social Media Trends
How often do you use online communities, social networks, message boards, or blogs for information and support related to neurofibromatosis?
NF Patients over Age 45 Are More Likely to Use Social Media at Least Weekly
Patients <44: 49%
12
Source: Neurofibromatosis Social Media Trends
NF Patients And Caregivers Are Consistent And Long-term Users of NF Online Communities
Thinking of your use of online communities and networks for information and support related to neurofibromatosis, which statement best describes you?
After I initially sign up for a community...
I use it regularly on a long-term basis
I use it regularly for a few weeks but then stop or only use it rarely
I only use it when a medical situation occurs
I rarely return to use it
Other
39%
24%
10%
15%
7%
46%
12%
18%
14%
7%
NF Caregivers
NF Patients
13
Source: Neurofibromatosis Social Media Trends
NF Patients over Age 45 Are Loyal Community Users Post Sign-up
Thinking of your use of online communities and networks for information and support related to neurofibromatosis, which statement best describes you?
After I initially sign up for a community...
I use it regularly on a long-term basis
I use it regularly for a few weeks but then stop or only use it rarely
I only use it when a medical situation occurs
I rarely return to use it
Other
28%
38%
15%
13%
6%
53%
12%
5%
18%
8%
NF Patients 45+
NF Patients <44
14
Source: Neurofibromatosis Social Media Trends
When it comes to dealing with and managing my neurofibromatosis, or the neurofibromatosis of the person I care for, I have lots of support from my family and friends.
NF Patients <44 NF Patients 45+
68%55%
Top 2 Agree
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
43%
25%
14%
8%
4%
25%
30%
22%
10%
4%
29%
26%
13%
11%
5%
21%
42%
16%
16%
NF Caregivers 45+
NF Caregivers <44
NF Patients 45+
NF Patients <44
NF Caregivers <44
NF Caregivers 45+
55% 63%
NF Patients under Age 44 Have Strongest Support from Family And Friends
NF Patients <44 N/A – 6%NF Patients 45+ N/A – 9%
NF Caregivers <44 N/A – 16% NF Caregivers 45+ N/A – 5%
15
Mod-sev NF Patients* Mild NF Patients**
5% 3%3% 5%
26%29%
36%
32%
25%16%
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Source: Neurofibromatosis Social Media Trends
When it comes to dealing with and managing my neurofibromatosis, or the neurofibromatosis of the person I care, online communities and social networks are an essential resource to me.
Patients with Moderate-to-severe NF More Likely to Report Online Communities Are An Essential Resource
60%
47%
* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.** Patients who have been diagnosed with mild neurofibromatosis.
Top 2 Agree
N/A – 5% N/A - 15%