After The Illness:
Living with the Consequences of Encephalitis
(or ‘Making Sense of Chronic Pain Among People Who Have Had Encephalitis and
Developing Service Support That Meets Their Needs’)
Between 2006 and 2008, the Encephalitis Society and the University of York worked
together on a research study into the after effects and social consequences of encephalitis.
The project was supported by the Big Lottery Fund who are also funding our current
development activity for the study which includes among other things, presenting
the project findings at Society support meetings and contributing to an online learning
module for professionals. We were particularly interested in chronic pain as the
result of encephalitis and how pain might impact on individuals’ and their
families’ everyday lives. In addition we wanted to do some preliminary work
to see if people may have central (neuropathic) pain due to encephalitis, whereby
they might experience altered sensitivity; for example, a very light touch might
feel painful or there may be sensations such as burning pain.
There were a number of different phases to the project. First, we sent out a postal
survey to all adult members of the Encephalitis Society. Very many of you took the
time to complete the questionnaire and send it back to us – thanks again to
all of you. Next we interviewed twenty three people about their experiences of living
with the consequences of encephalitis. We also asked to speak to someone in the
family about their views on the impact of encephalitis and its after effects. Finally
we interviewed fifteen health and social care professionals, so we could get their
perspectives on the after-effects of encephalitis, in particular chronic pain, and
also how they felt families should best be supported after the illness.
Because of all these different research elements, there was a lot of information
for us to work through. We have recently completed the research report for the project
and have also written two project summaries; one for specialist healthcare practitioners
and the other for social care professionals and for individuals and families who
are managing the consequences of encephalitis.
The research report and both project summaries are all going online on these web
pages. A ‘good practice’ guide for health and social care professionals
will also be accessible shortly. The research report is over 200 pages long, so
we recommend that you look at one of the project summaries first. Also some of the
information in the report refers to problems after encephalitis for individuals
and their families which might be distressing to read about. Please remember that
not everyone has the same or same severity of problems after the illness. In addition,
as we found from our postal survey, some people may be doing well after encephalitis,
reporting few or no severe difficulties.
After The
Illness research report:
All rights reserved. Except for the quotation of short passages for the purposes
of criticism and review, no part of the publication may be reproduced, stored in
retrieval system or transmitted, in any form or by any means, electronic, mechanical,
photocopying, recording or otherwise, now known or hereafter invented, without prior
permission of the Encephalitis Society. Copyright 2008 by the Encephalitis Society.
Project
summary for specialist healthcare professionals:
The Research Team, from left
to right, Ava Easton, Karl Atkin
and Sally Stapley
We are happy for you to download and copy this summary. The rights of Sally Stapley,
Karl Atkin and Ava Easton to be identified as Authors of this work had been asserted
in accordance with the UK copyright, Design and Patents Act 1988.
Project summary
for families and social care professionals:
We are happy for you to download and copy this summary. The rights of Sally Stapley,
Karl Atkin and Ava Easton to be identified as Authors of this work had been asserted
in accordance with the UK copyright, Design and Patents Act 1988
‘Good Practice’
guide for health and social care professionals:
We are happy for you to download and copy this guide. The rights of Sally Stapley,
Karl Atkin and Ava Easton to be identified as Authors of this work had been asserted
in accordance with the UK copyright, Design and Patents Act 1988
Encephalitis Patient Experience of Neurological Services in the UK
by Ava Easton
Readers will remember that in the Autumn of 2003 we asked for your help in auditing
this topic. We received an overwhelming response from you – it was clearly a subject
there was strength of feeling about. We recently presented our findings as a poster
with an accompanying oral presentation, when Ava attended the 6th World Brain Injury
Congress in Australia 2005. Below is the poster summary of our findings based on
your responses. The accompanying paper goes into greater detail.
Poster
Paper
Consequences of Encephalitis PDF
Poster
Report of a Postal Survey (Year 2000 survey) carried out by the Encephalitis Society,
Elaine Dowell and Ava Easton, – Encephalitis Society, Malton, UK
Tom Solomon – Medical Microbiology and Tropical Medicine, University of Liverpool
Background
Encephalitis is inflammation of the brain tissue. It can occur at any age
in any part of the world and is caused by a variety of viruses, including the herpes
simplex virus. The current identified incidence is 7.4 per 100,000 (Beghi,
E. Nicolosi, A., Kurland, L. T., Mulder, D.W., Hauser, A. and Schuster, L. (1984)
“Encephalitis and aseptic meningitis, Olstead County, Minnesota 1950-1981.
Annals of Neurology, 283-294).
When untreated, the mortality rate for those acquiring encephalitis is high, but
the development of antiviral and other supportive treatments means that many more
patients are now surviving.
In spite of this, there is little data on the long-term consequences of viral encephalitis
for patients and their families, though it is known that these include muscle weakness,
epilepsy and speech and communication disorders, and difficulties with memory, learning,
concentration and understanding.
Aims and Methodology
The purpose of the research described in this report was to investigate the consequences
of encephalitis and their impact on the quality of life of people affected, their
families and carers.
A questionnaire was designed by the Encephalitis Society, and distributed to all
its 1200 members in January 2000.
Groups were compared using the Chi squared test, taking p<0.05 as statistically
significant.
Findings
A total of 400 (33%) of the questionnaires were returned, relating to the experiences
of 261 people who had contracted encephalitis as adults and 139 who had contracted
it as children.
Diagnosis
38% of those who had contracted the disease as adults and 24% of those who had contracted
the disease as children reported that their encephalitis had been diagnosed as due
to herpes simplex virus.
Resuming a ‘Normal Life’
The majority of both groups reported that they did not feel they had been fully
or partly able to ‘fully resume their normal life’. This included
72% of those who had contracted the disease as children, and a slightly lower number
(69%) of those who had contracted the disease as adults.
Financial Impacts
Nearly two-thirds (61%) of those who had contracted the disease as adults reported
that their illness had resulted in a fall in income for them or their families.
Almost twice as many adults were unemployed after their illness as were prior to
it. Two-thirds of those who were in employment before their illness reported
that they were not working at the time of the survey.
Educational Impacts
44% of those who contracted the illness as children had a statement of special educational
needs and/or attended
Almost a half (47%) of those who had contracted the illness in childhood reported
epilepsy resulting from the encephalitis. These respondents were well over
twice as likely to have a ‘statement of special educational needs’ and/or
to attend a school or college for children / young people with special educational
needs (62% compared to 27%, p<0.001)
Relationship Breakdown
208 respondents reported that they had been either married or in a stable relationship
before their illness. Of these 20% had experienced breakdown of that relationship
since the illness.
Other Difficulties
53% of those who had contracted the disease as children and 39% of those who had
contracted the disease as adults were in receipt of Disability Living Allowance
(DLA), indicating that they required significant assistance or regular supervision
with personal care tasks and/or had very limited mobility.
Those who had been diagnosed with herpes simplex encephalitis were significantly
more likely to be in receipt of DLA than those who were not ((48% compared to 34%,
p=0.05), suggesting that herpes simplex encephalitis is more likely to cause long-term
disability than other forms of the disease.
Respondents were given a list of 23 problems potentially experienced by people who
have contracted encephalitis.
The most common problem for those who had contracted encephalitis as adults, reported
by over 80% of the respondents, was tiredness/fatigue. This was followed by
concentration and attention difficulties; frustration and anger; anxiety; specific
memory problems; mood swings and depression.
Over half of these respondents also reported difficulties with one or more of the
following:
- planning and problem-solving
- short-term memory
- word-finding
- headaches
- balance
Those who had contracted encephalitis during childhood reported a slightly different
pattern of problems and difficulties. It should be noted that it was usually
their parents who completed the questionnaire rather than the children themselves.
Psychosocial difficulties
The findings showed that concentration and attention problems were seen as the most
common problem for those who had contracted the disease as children. This
was closely followed by tiredness/fatigue; mood swings; and frustration and anger.
Significantly more difficulties with new learning were reported for children than
for adults (p<0.001), but significantly fewer problems with short term memory,
planning and problem-solving (p<0.05 for each).
|
Problem
|
% of Adults
|
% of Children
|
|
Short-term memory
|
57
|
44
|
|
Long-term memory
|
45
|
40
|
|
Specific memory
|
61
|
37
|
|
Planning/problem-solving
|
57
|
47
|
|
Word-finding difficulties
|
56
|
58
|
|
New Learning
|
44
|
60
|
Similar levels of difficulties with concentration and attention, and with frustration
and anger, were reported for children and adults. However, initiative and
motivation problems appeared to effect over twice as many children as adults:
|
Problem
|
% of Adults
|
% of Children
|
|
Concentration/attention
|
70
|
72
|
|
Initiative/motivation
|
19
|
46
|
|
Frustration/anger
|
68
|
65
|
Important emotional impacts related to the condition were reported for both children
and adults. However, whereas mood swings were the most common manifestation
for children, more adults suffered from depression and anxiety:
|
Problem
|
% of Adults
|
% of Children
|
|
Depression
|
58
|
35
|
|
Mood Swings
|
59
|
66
|
|
Anxiety
|
67
|
55
|
Physical impairment
With regard to sensory and motor function, significantly more difficulties with
fine motor function were reported for those who had contracted encephalitis as children
than as adults (p<0.05), (though gross motor function was almost at the same
level), and with co-ordination (p<0.05) – but fewer problems with impaired
senses and balance:
|
Problem
|
% of Adults
|
% of Children
|
|
Impaired senses
|
30
|
22
|
|
Gross motor function
|
38
|
39
|
|
Fine motor function
|
19
|
40
|
|
Co-ordination
|
42
|
50
|
|
Balance
|
52
|
45
|
|
Vision
|
31
|
32
|
|
Light/sound sensitivity
|
46
|
48
|
There were significant differences in the physical impacts of the condition.
Those who had contracted the condition as children were almost twice as likely to
be affected by epilepsy, while reporting of tiredness/fatigue was much higher for
adults:
|
Problem
|
% of Adults
|
% of Children
|
|
Epilepsy
|
26
|
47
|
|
Headaches
|
55
|
49
|
|
Tiredness/fatigue
|
80
|
68
|
Conclusions and Recommendations
This study shows that survivors of encephalitis have severe psychological and social
impairment, in addition to physical handicap. Although our study was limited by
the fact that it relied on self reporting, or reporting by a family member, it suggests
that the consequences of encephalitis may differ according to the age of the patient,
and the cause of the encephalitis. Adults who survived encephalitis suffered not
only in terms of employment, but also in terms of relationship breakdowns. Encephalitis
had a marked impact on children’s education, especially those who had also
developed epilepsy. More work is needed to define further the consequences of encephalitis.
Those involved in the rehabilitation of survivors of encephalitis need to be aware
of the specific difficulties they are likely to suffer.
Correspondence should be sent to Elaine Dowell, Resource Centre Manager, Encephalitis
Society, 32 Castlegate, Malton YO17 7DT. Tel: 01 653 692 583 Fax:
01 653 698 551.
email: Ava Easton
The Year 2000 survey was funded by the friends and family of Gordon Graffin.
Last Modified: 16 January 2009