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Impact of a patient information website - how, where, what and why
Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews and Alex Morrison
University of Wales College of Medicine, Wrexham and Cognitive Applications, Brighton,
UK
Introduction
• Delivery of high quality information to patients with chronic diseases can lead to:– improved compliance/concordance– improved quality of life
• Internet based technology offers an additional resource with some clear advantages:– renewable resource– potential for interaction– accessible at all times
Kidney disease
• Progressive, debilitating, need for dialysis and reduced life expectancy
• Patients are expected to retain much information and make decisions
• Information can be very effective at improving quality of life and concordance
Aims of the project
• To develop an interactive kidney patient information web site
• To perform an internet-based and Renal Unit based survey of the site
Basic principles
• A project team was established (see poster for details of approach)
• Patients led the process to determine the style, colours, language and content of the site.
• Uses animations, patient experiences and includes a bulletin board facility
• Site = www.kidneypatientguide.org.uk
Internet Survey
• An internet-based survey was performed of over 1000 individual visitors by Virtual Surveys.
• Results are presented in comparison to an average of other sites surveyed by Virtual Surveys - UK-based financial and commercial sites.
COUNTRY
25%
61%
14%
Other
USA/Canada
UK
Base : 970 (all answering)
RELATIONSHIP WITH KIDNEY DISEASE
45%
28%
7%
4%
3%
2%
11%
Family/friend/carer
Kidney patient
Medical staff
Other students
Medical/nursing student
Researcher
Other/none
Base : 887 (all answering)
TREATMENTS USED (Patients)
36%
30%
16%
15%
32%
Kidney failure/noton dialysis
Haemodialysis
PeritonealDialysis
Transplant
Other
TREATMENTS USED : UK V USA/CANADA
27%
44%
35%
34%
21%
40%
23%
6%
5%
38%
Kidney failure/not on dialysis
Haemodialysis
Peritoneal Dialysis
Transplant
Other
UK
USA/Canada
LEVEL OF KNOWLEDGE REGARDING KIDNEY
DISEASE
3% 2% 1%14% 23%
4%
27%
36%
26%
30%
30%
31%
26%9%
38%
TOTAL PATIENTS FRIEND/CARER
Not at allknowledgeableNot veryknowledgeableFairly knowledgeable
Quite knowledgeable
Expert
Base : 995 (all answering)
AGE
27%11%
35%
26%
22%
29%
11%
21%
5% 12%
AVERAGE SITE KIDNEY PATIENT GUIDE
55+
45-54
35-44
25-34
Under 24
Base : 882 (all answering)
SEX
65%
35%
35%
65%
AVERAGE SITE KIDNEY PATIENT GUIDE
Women
Men
Base : 931 (all answering)
HOW HEARD ABOUT WEB SITE: UK vs USA
49%
23%
8%
7%
3%
10%
75%
14%
1%
9%
Search Engine
Link from other site
Word of mouth
Advert in hospital etc.
TV/Press article
Other
Base : 1032 (all answering)
MAIN REASONS FOR VISITING WEB SITE
43%
36%
30%
8%
5%
17%
General kidneydisease info.
Info abouttreatments
Advice on specificproblems
Support group info.
Just browsing
Other
Base : 1010 (all answering)
OTHER SOURCES OF INFORMATION
54%
37%
33%
24%
17%
4%
6%
18%
Doctors/medical staff
Other web sites
Books
Leaflets
Friends/family
Support groups
Other
None sought
Base : 978 (all answering)
OVERALL OPINION OF WEB SITE
24% 26%
38% 40%
28% 25%
7% 9%
AVERAGE SITE KIDNEY PATIENT GUIDE
PoorFairGoodVery GoodExcellent
HOW SITE COMPARED WITH OTHER KIDNEY DISEASE
WEB SITES
46%
24%
26%
4%
%
Much better
Little better
About the same
Little worse
Much worse
Internet-based information in nephrology
• Telephone survey amongst UK renal units and patients undertaken by BMRB
• Telephone interview with patients and staff
• Sample– 147 patients– 26 staff
5 9
4 1
15
1 6
2 5 2 42 9
2 2
7 8
Base: All patients (147)
Male Female <25 25-3435-44 45-54 55-64 65+ Working NotworkingAge
Patient sample
Patients perception regarding information
41
50
44
I preferred not to be given alot of information about my
condition
Base: All patients (147)
Don’t know
I was given information bydoctors and nursing staff,but didn’t look anywhere
else
I tried to find out all theinformation I could
Information sources for patients
9 3
8 7
8 1
8 0
6 3
5 6
5 4
3 5
3 3
2 2
2 0
1 3
1 2
5
4
5
1
ConsultantDialysis nurse
LeafletsDietician
Other patientBook
GPFriends/relatives
Other hospital nurseSupport groups
PharmacistPractice nurse
InternetHelplineCD-Rom
OtherNone Base: All patients (147)
Information sources for staff
9696
9292
88
85
7373
5046
2727
15
8
1
Leaflets
Books
Other patient/carer
Colleagues
Conferences/seminars
Friends/relatives
Training/university course
Support groupsComputer (not Internet)
Specialist magazines
Internet/website
Helpline
CD-Rom
OtherNone Base: All staff (26)
Patients view of internet based information sites
4 6
2 5
2 2
15
Very good
Good
Fair (1%) / Poor(1%)
Base: All patients (147)
Excellent
Don’t know
Problems raised by patients
• Majority had access to the internet at home or via a friend or family member
• Minority had used it to access health information web sites
• Most felt it would be good to do so
• The hospital offers a potential route for internet access
Conclusions
• High quality information web sites can be created to give information to patients with chronic disease
• An internet based survey demonstrated who was looking for information, where from and why.
• A survey of UK renal patients demonstrated practical issues - there is a desire to look for information but limitations in terms of internet access
Finally
• There are problems– Time– Bulletin Board problems
• Contact– Peter.Rutherford@new-tr.wales.nhs.uk– kpg@pobox.com
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