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Physiotherapy 95 (2009) 157–163

Physiotherapy and Guillain–Barré syndrome: results of a national survey


Ian Davidson a,∗ , Charlotte Wilson a , Timothy Walton b , Shirley Brissenden b
a School of Nursing, Midwifery and Social Work, University of Manchester, Manchester M13 9PL, UK
b Central Manchester Foundation Trust at Trafford General Hospital, Intermediate Neuro Rehabilitation Unit, Urmston, Manchester M41 5SL, UK

Abstract
Objective To discover the extent to which persons with Guillain–Barré syndrome receive treatment by a physiotherapist (as inpatients and
outpatients), and to assess whether the amount of treatment received is related to outcome.
Design Survey method using self-administered questionnaires distributed through a national database.
Participants Members of the Guillain–Barré Syndrome Support Group (n = 1535).
Main outcome measures General patient data, general mobility, F-score, Hospital Anxiety and Depression Scale, Short Form-36 and Fatigue
Severity Scale.
Results In total, 884/1535 (58%) complete responses were received. Nearly 10% of respondents had not received treatment by a physiotherapist
in hospital despite their average functional level being the same as respondents who had received treatment in hospital. One-quarter of
respondents said that they had not received treatment following hospital discharge despite the identification of relatively high levels of
disability. Those who did not receive treatment by a physiotherapist following discharge were less severely disabled. This may indicate that
physiotherapists tend to offer treatment to more severely disabled patients. The majority of patients reported disabling fatigue; whilst not
statistically related to receipt of treatment by a physiotherapist, this highlights the importance of assessing fatigue in treatment plans to improve
physical functioning.
Conclusion Improvements to policy and practice can be made by widening inpatient accessibility to treatment by a physiotherapist and
increasing outpatient provision of treatment for patients with Guillain–Barré syndrome of all degrees of severity.
Crown Copyright © 2009 Published by Elsevier Ltd on behalf of Chartered Society of Physiotherapy. All rights reserved.

Keywords: Guillain–Barré syndrome; Physiotherapy; National survey; Disability; Fatigue

Background include respiratory care, passive movements, positioning,


splinting [14] and even gentle progressive strengthening exer-
Guillain–Barré syndrome (GBS) remains the largest sin- cises [6]; in the postacute phase, more intensive strengthening
gle cause of acute neuromuscular paralysis in most countries and functional activities may occur [14].
[1]. Incidence rates of 1.18–2 per 100,000 population have Studies investigating the effect of rehabilitation inter-
been reported [1–5], and these are relatively constant world- ventions have been few in number and have had small
wide [2,4]. Men are affected twice as often as women [2,6,7], sample sizes [12,15–19]. No comprehensive and system-
and there appears to be a bimodal distribution for age with atic studies have been conducted to assess the efficacy of
two peaks: one in children and another in the elderly [1,8]. treatment by a physiotherapist in GBS [6], but small-scale
Mortality in GBS is estimated to be as high as 15% [9], studies considering the effect of physiotherapeutic interven-
and 20% are left with persistent and significant disability [9]. tions have indicated positive outcomes in terms of strength
Two-thirds of GBS patients achieve good physical recovery [12], endurance [12,17], gait quality and function [15,16],
[2,4,10–12], and approximately 40% of patients are referred and fatigue [12]. However, no studies have shown a defini-
for rehabilitation [6,13]. Interventions in the acute phase tive positive effect; consequently, efficacy remains unclear
[6].
∗ Corresponding author. Tel.: +44 0161 306 7637.
Treatment by a physiotherapist in GBS is not evidence
E-mail address: ian.davidson@manchester.ac.uk (I. Davidson). based and appears to be applied with experience gained from

0031-9406/$ – see front matter. Crown Copyright © 2009 Published by Elsevier Ltd on behalf of Chartered Society of Physiotherapy. All rights reserved.
doi:10.1016/j.physio.2009.04.001
158 I. Davidson et al. / Physiotherapy 95 (2009) 157–163

other diseases [7]. Modalities employed reflect individual Table 1


experience and institutional practice [9,19]. Despite this, it Physical functioning of patients with Guillain–Barré syndrome (F-score)
[24].
is suggested that physiotherapy referrals should be made in
the early stages of GBS [19], implying that although physio- 0 – Healthy
1 – Minor symptoms or signs, able to run
therapy interventions remain unproven [14], their application 2 – Able to walk more than 5 metres without assistance but unable to run
appears to be logical and appropriate. 3 – Able to walk more than 5 metres with assistance
This study sought to discover the extent to which a nation- 4 – Bed or chair bound
wide population of postacute GBS patients had access to 5 – Requiring assisted ventilation for at least part of the day
treatment by a physiotherapist, and to assess relationships 6 – Dead
between those who received formal physical treatment and
those who did not in terms of current and past disability. Data analysis

The distribution of interval and ratio data were assessed


Method using the Kolmorgorov–Smirnov test and found to be non-
normal. As such, all continuous and ordinal data were
Data collection assessed using the Mann–Whitney U-test, and categorical
data were assessed using Pearson’s Chi-square test (χ2 ). Cen-
Questionnaires were distributed to 1535 members of the tral tendency was assessed using the median, and spread was
GBS Support Group in January 2007. The five sections of the assessed using the interquartile range (IQR).
questionnaire were: general information, physical condition,
anxiety and depression, general health and fatigue. General Results
information was related to personal statistics (e.g. age, time
since diagnosis and details of hospital admission). Physical A response rate of 58% yielded 884 replies. No reminders
condition was concerned with physical state at the time of were sent but a notice was posted on the GBS Support Group
completing the questionnaire and during the period of illness, website inviting members to respond. The final question-
such as mobility on discharge from hospital, whether or not naire was returned in January 2008. In total, 742 eligible
the patient had received treatment by a physiotherapist, and questionnaires were completed and analysed.
information about the patient’s occupation before and after Forty-nine percent (366/742) of the cohort were male, and
their illness. Anxiety and depression were assessed using the the median age of the total cohort was 66 years (IQR 56–74).
Hospital Anxiety and Depression Scale [20], general health The median time since diagnosis was 7 years (IQR 3–12.5),
was assessed using Short Form-36 (SF-36) [21], and fatigue and the average reported length of stay in hospital was 63
was assessed using the Fatigue Severity Scale (FSS) [22,23]. days (IQR 28–119). Three hundred and forty respondents
Although questionnaires were sent to all members of (46%) spent time in intensive care; for this group, the average
the GBS Support Group, the target group was members reported length of stay in the intensive care unit was 21 days
who had had GBS and its variants but not those who had (IQR 8.5–43.5). Of 714 respondents admitted to hospital, 270
chronic inflammatory demyelinating polyradiculoneuropa- (37%) required assisted ventilation. The total cohort reported
thy (CIDP). A covering letter asked those with CIDP not a median F-score of 5 (IQR 5–6) at worst and a current F-
to answer the questionnaire as there was no way of screen- score of 3 (IQR 1–3). The median value of the difference
ing out CIDP sufferers from the database. Ethical approval between the F-score at worst and at best was 3 points.
for the study was obtained from the local university ethics
committee. Mobility

Good outcome in GBS Five hundred and one respondents (68%) said that they had
not regained their previous level of mobility. Fig. 1 shows the
Good recovery in GBS is commonly defined as an F-score changes in mobilisation methods between the point of leaving
[24] of 0 (healthy) or 1 (minor symptoms or signs, able to hospital and the time of completing the questionnaire.
run) [10]. The F-score is a 7-point ordinal scale describing After discharge, patients used a variety of mobilisation
functional level (Table 1). Moderate recovery is classed as methods; at the time of completing the questionnaire, the
an F-score of 2 (able to walk more than 5 metres without method of mobility was more likely to involve walking inde-
assistance but unable to run), and a higher score reflects severe pendently or with a stick. This demonstrates the general
neurological damage [10]. restorative nature of the condition, and that considerable
Although criticised [6,11], the F-score is reliable, easy to improvement continues after discharge.
use and widely applied in studies of GBS [25], the majority of
Physiotherapy
which concentrate on pharmaceutical interventions such as
intravenous immunoglobulins, plasma exchange and steroids Seven hundred and twenty-seven respondents answered
[24,26,27]. the question: ‘During your stay in hospital, did you receive
I. Davidson et al. / Physiotherapy 95 (2009) 157–163 159

Fig. 1. Changes in method of mobility since hospital discharge.

physiotherapy?’ Sixty-eight of these 727 respondents (9%) Table 3 shows that those who did not receive treatment by
indicated that they did not receive treatment by a physio- a physiotherapist had comparable ranges of disability as those
therapist, two respondents could not remember, and 657 who did receive treatment following discharge. Considering
respondents (90%) indicated that they did receive treat- the top three methods of mobility, walking with crutches or
ment. The number receiving treatment after leaving hospital two sticks was the main method for both groups. However, for
dropped to 75% (556/742); 387 (52%) received their treat- those in receipt of treatment, less independent methods were
ment as an outpatient, and 88 (12%) had their treatment at reported [being pushed in a wheelchair (23%) and walking
home. The rest were a combination of outpatient and domicil- with a frame (21%)] compared with patients who did not
iary patients, with only a few having other, less conventional receive treatment [walking with stick/single crutch (25%) and
locations for treatment. walking independently (32%)].
Forty-one (6%) respondents said that they did not receive Using the Mann–Whitney U-test, an assessment was made
treatment by a physiotherapist as an inpatient or outpatient. of the difference between those who received treatment by
Their median physical condition at worst was 5 (IQR 5–6) a physiotherapist after discharge and those who did not in
and at the time of completing the questionnaire was 2 (IQR terms of their present F-score. The statistical analysis indi-
1–3). The median value of the difference between the F-score cated that those who did not receive treatment after discharge
at worst and at best was 2; 1 point less than that for the total from hospital had a lower F-score at the time of complet-
cohort. ing the questionnaire than those who did receive treatment
Table 2 presents F-score data at worst with the fre- [median values of 3 and 2 (IQR 2–3 and 1–3, respec-
quency of those who did and did not receive treatment by tively) for those who received treatment and those who did
a physiotherapist as an inpatient. Many patients who did not receive treatment, respectively (P = 0.023, z = −2.277)].
not receive treatment as an inpatient had considerable lev- In order to triangulate this finding statistically, an assess-
els of disability. The median value was 5 (IQR 5–6) for both ment was made between those who did and did not receive
groups. treatment on discharge from hospital against those who

Table 2
Comparison of patients who received/did not receive inpatient treatment by a physiotherapist against their physical functioning at worst (n = 725).
Received treatment as an inpatient Did not receive treatment as an inpatient
n = 657 (%) n = 68 (%)
0 – Healthy 2 0
1 – Minor symptoms or signs, able to run 1 1 (2)
2 – Able to walk more than 5 metres without 6 (1) 7 (10)
assistance but unable to run
3 – Able to walk more than 5 metres with assistance 22 (3) 10 (15)
4 – Bed or chair bound 375 (57) 35 (52)
5 – Requiring assisted ventilation for at least part of 183 (28) 6 (9)
the day
Missing 68 (10) 9 (13)
Total 657 68
160 I. Davidson et al. / Physiotherapy 95 (2009) 157–163

Table 3
Comparison of patients who received/did not receive treatment by a physiotherapist against their method of mobility after discharge (n = 711).
Had treatment after Had no treatment after
discharge n = 556 (%) discharge n = 155 (%)
Walking independently without any walking aids 49 (9) 49 (32)
Walking with a stick (or single crutch) 87 (16) 39 (25)
Walking with crutches (or two sticks) 95 (17) 25 (16)
Walking with a frame 115 (21) 16 (10)
Propelling yourself in a wheelchair 41 (7) 4 (3)
Being pushed in a wheelchair 130 (23) 14 (9)
Powered wheelchair 23 (4) 1
Other 14 (3) 4 (3)
Missing 2 3 (2)
Total 556 155

Table 4
Comparison of patients who received treatment by a physiotherapist with those who did not receive treatment following hospital discharge.
Scale Median scores (IQR): Median scores (IQR): Mann–Whitney
treatment received treatment not received U (z value)
HADS (score range 0 to 21)
Anxiety 6 (3 to 10) 7 (3 to 10) 0.99 (−0.016)
Depression 5 (2 to 8) 5 (2 to 8) 0.33 (−0.98)
SF-36 (0 to 100)
SF-36: physical function 50 (20 to 80) 65 (30 to 90) 0.002 (−3.04)b
SF-36: role limitation (physical) 25 (0 to 100) 50 (0 to 100) 0.31 (−1.01)
SF-36: role limitation (mental) 100 (0 to 100) 100 (33 to 100) 0.42 (−0.81)
SF-36: social function 78 (44 to 89) 78 (56 to 89) 0.22 (−1.23)
SF-36: mental health 75 (56 to 88) 72 (56 to 92) 0.62 (−0.50)
SF-36: energy and vitality 45 (25 to 60) 50 (30 to 65) 0.2 (−1.3)
SF-36: pain 67 (44 to 89) 67 (44 to 100) 0.2 (−1.28)
SF-36: health perceptions 55 (32 to 72) 52 (35 to 77) 0.56 (−0.6)
SF-36: change in health 50 (50 to 50) 50 (50 to 50) 0.7 (−0.39)
FSS (0 to 7)
FSS 5 (4 to 7) 5 (4 to 6) 0.039 (−2.07)a
IQR, interquartile range; HADS, Hospital Anxiety and Depression Scale; SF-35, Short Form-36; FSS, Fatigue Severity Scale.

said that they had not recovered their previous level of the amount of treatment received (Spearman’s rho = 0.024,
mobility. This was done using the χ2 test and relative risk P = 0.61).
ratios. Table 4 indicates that similar levels of anxiety and depres-
The risk ratio was calculated between the proportion of sion were found between the two groups. However, in terms
those who received treatment by a physiotherapist without of general health, as measured by SF-36, a significant differ-
regaining their previous level of mobility (n = 396, 72%) and ence was found between the groups for the domain of physical
those who did not receive treatment but who regained their function, with those who received treatment by a physiothera-
previous level of mobility (n = 85, 55.6%). The risk ratio pist having lower levels of function compared with those who
equalled 1.3, meaning that a patient who did not receive did not receive treatment. All other functions within SF-36
treatment was 1.3 times more likely to regain their previous were found to be non-significant between the groups.
level of mobility compared with a patient who did receive
treatment. Fatigue
Respondents who received treatment by a physiothera-
pist after discharge (n = 556) were asked how much treatment Severe fatigue was defined as a score of 5 or more on the
they received in the period after leaving hospital. The average FSS [12]. In the present study, 410/742 respondents (57%)
amount of time was two 1-hour sessions per week for a period reported severe fatigue, and 455/742 (61%) said that fatigue
of 10 weeks. Total time received by respondents was calcu- was among their three most disabling features. Women were
lated as the average of: treatment time per week × (number just as fatigued as men (P = 0.51, z = −0.67), and there was no
of sessions × number of weeks). The median time that each relationship between age and fatigue (Spearman’s rho = 0.04,
respondent received in treatment after discharge was 12 hours P = 0.26). There was also no relationship between time since
(IQR 5–36 hours). There was no significant difference in the diagnosis and FSS score (Spearman’s rho = −0.06, P = 0.13).
amount of treatment time between the genders (P = 0.83, Table 4 shows a significant difference in FSS score
z = −0.22), and there was no association between age and between the groups, although the median values are iden-
I. Davidson et al. / Physiotherapy 95 (2009) 157–163 161

tical. Although the IQR is narrower for those who did not This is supported by the assertion made by Carroll et
receive treatment by a physiotherapist, this does not wholly al. [13] that many patients are discharged without receiv-
explain the significant difference. For a more sensitive assess- ing rehabilitation. They also suggest that since rehabilitation
ment of the differences between the groups, an independent makes a measurable difference, it should be available to all
samples t-test was conducted; this showed a non-significant patients with GBS [13]. This notion of treatment by a phys-
result (P = 0.07, 95% confidence interval 0.02–0.58) between iotherapist making a difference could be supported by the
those who received treatment (mean 5) and those who did not findings of the present study, which has shown that whilst
(mean 4.8). Consequently, it would be unsafe to conclude the F-score in the general cohort improved by 3 points, the
that there is a true significant difference between these two F-score only improved by 2 points among those who did
groups. not receive treatment as either an inpatient or an outpa-
tient. However, this may merely be an artefact of patients
who are less severely disabled having less potential for
Discussion improvement.
It is possible that the failure to offer treatment by a
Physical functioning physiotherapist after hospital discharge is a function of
resources, or merely a prevailing view that the majority
Changes in the reported F-scores reflect the restorative of GBS patients make a good recovery [2,4,19,28], and
natural history of the condition, since the symptoms of GBS that improvement will continue following discharge with
show recovery regardless of whether or not formal rehabilita- or without treatment. This continued improvement is seen
tion in the form of therapies is offered. This is reinforced by quite clearly in Fig. 1 which compares mobility at dis-
the observed improvement among those who did not receive charge with present mobility. It could be suggested that
treatment by a physiotherapist. However, it is debatable many discharges in GBS are premature and based on the
whether or not the restoration of neurological functioning presumption of an improving natural history and eventual
is sufficient for the return to a level of physical functioning good outcome; this may account for the sharp drop in pro-
considered acceptable by those affected. vision of treatment by a physiotherapist following hospital
discharge.
Inpatient treatment
Implications for practice
Approximately 10% of respondents said that they did not
receive treatment by a physiotherapist as an inpatient. This The definition of good recovery by Bernsen et al. [10]
was a surprising finding, as the importance of physical inter- using the F-score appears to have an arbitrary basis, and can
ventions in the shape of formal therapy is widely accepted be viewed as a very crude estimate of whether or not the
in the literature [6,12,14,15,17], to the extent that Hughes et outcome is good. It has been noted by a number of authors
al. [9] believe that the significance of the multidisciplinary [10,12,23] that problems persist even in patients with a good
team (MDT) is as important as immunotherapy. It is difficult outcome, particularly in relation to fatigue [23,29]. How-
to see that there could be a fully functioning MDT without ever, substantial improvement can be achieved with physical
physiotherapy. The absence of treatment by a physiothera- activity [12] which, in remedial conditions, is usually con-
pist for 68/742 respondents is noteworthy, particularly as the ducted or directed under the auspices of physiotherapists.
median F-scores at worst for those who received treatment as Whilst it is clear that physiotherapists, quite understandably,
an inpatient and those who did not were identical at 5 (IQR provide more treatment for the more disabled, the oppor-
5–6, no scores for six patients). Consequently, the level of tunity cost of this is to deny treatment to those who are
disability does not appear to be the reason why these patients less obviously disabled but who may benefit just as much,
did not receive treatment. or even more, from physiotherapeutic interventions. This
is de facto rationing. The concern is that many patients
Postdischarge treatment with a supposedly good outcome still have severe prob-
lems, such as fatigue, which could be assisted by timely
Even for those who did not receive treatment by a phys- intervention.
iotherapist, considerable levels of disability were reported
(Table 3), which may again indicate an unmet need for treat- Fatigue
ment. The risk ratio analysis and summary F-scores show
that those who did receive treatment had severe disability and The majority of respondents reported severe fatigue
were 1.3 times more likely not to regain their previous level (410/742, 57%) and stated that fatigue was among their three
of mobility. Whilst not establishing a causative relationship, most disabling symptoms (455/742, 61%). This has been
this suggests that more severely affected patients received reported as even higher in other studies. For instance, Merkies
treatment, and the more disabled patients within that group et al. [23], in their study of 113 postacute GBS patients,
received more treatment time. demonstrated that severe fatigue (defined as FSS scores at
162 I. Davidson et al. / Physiotherapy 95 (2009) 157–163

or above the 95th percentile of the control group – equivalent Conclusion


to a score of at least 5 on the FSS) was present in 80% of GBS
patients compared with the control group, and was found to be This national study on GBS found that, overall, there was
a most disabling symptom, apparently unrelated to strength substantial improvement in physical functioning of patients
or sensation. In both studies, no relationship between fatigue since diagnosis. This is consistent with the natural history of
and age or time since onset of symptoms was found. There the condition. However, improvements were far from a return
is clearly a potential for physiotherapists to treat fatigue in to the pre-GBS level of functioning, and most patients still
GBS patients given its prevalence, disabling effect and the experienced disability. The majority of patients in this study
evidence of its utility. also reported severe fatigue that has a disabling effect on their
For example, Garssen et al. [12] demonstrated a statisti- life. A good outcome for GBS patients must therefore address
cally significant improvement in FSS scores in a group of fatigue as an important element of physical functioning by
20 GBS and CIDP patients following three-times weekly assessing fatigue in patients as well as their ability to per-
progressive resistance training on a cycle ergonometer for form tasks. Surrounding evidence suggests that treatment by
12 weeks. Improvements were also seen in levels of anxi- a physiotherapist is a beneficial and integral part of an MDT’s
ety, depression and quality of life. Consequently, the failure delivery of rehabilitation. However, treatment is not univer-
to offer treatment by a physiotherapist in the postdischarge sally offered during the inpatient stay, despite high levels of
stage of recovery could either hinder the rate of recovery, or disability among patients.
result in untreated fatigue and a poorer outcome regardless It is suggested that changes in policy and practice should
of the level of disability. be introduced that recommend minimum provision of reha-
bilitation following hospital discharge, and that all GBS
Limitations of the study patients should have access to rehabilitation services as
inpatients. Adequately funded trials of physiotherapeutic
Since recruitment was from a single source, it is not interventions are also needed in order to assess the efficacy
possible to extrapolate the study’s findings to the general pop- of physical rehabilitation in this condition.
ulation of people who have had GBS. Furthermore, whilst the
gender split is comparable with previous studies [1,23,30],
the average age in previous studies was between 48 and 54 Acknowledgements
years [2,23,30], compared with 66 years in the present study.
Even taking into account the median time since diagnosis, The authors wish to thank the School of Nursing, Mid-
this would still make the average age older than previous wifery and Social Work for support through the Pump
cohorts. Use of assisted ventilation in this cohort also suggests Priming Fund; Andy and Maggie Leitch on behalf of the GBS
that they are a more severely disabled group of patients. It is Support Group for organising and assisting with the distri-
generally expected that approximately 30% of GBS patients bution of the questionnaire to their membership; and Lisa
require assisted ventilation [9,11], but in this study, the figure Newington for her assistance with data entry and cleaning.
was 37%; this could reflect those most likely to access the Ethical approval: University of Manchester Ethics Commit-
support of the GBS Support Group. Consequently, the find- tee.
ings of this study cannot be widely generalised. It can also be
Funding: University of Manchester School of Nursing, Mid-
proposed that since physiotherapists tend to offer more treat-
wifery and Social Work – Pump Priming Fund.
ment to more severely disabled patients, the results of the
present study, based on a relatively severe group of patients, Conflict of interest: None declared.
could be an overestimate of the total amount of physiother-
apeutic interventions offered to GBS patients in general. As
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