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Referral of patients with neuromuscular disease to occupational therapy, physical therapy and speech therapy: Usual practice versus multidisciplinary advice

Taylor & Francis
Disability and Rehabilitation
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PURPOSE To compare the volume of occupational therapy (OT), physical therapy (PT) and speech therapy (ST) as currently received by patients with neuromuscular diseases with the volume of OT, PT and ST recommended by a multidisciplinary team. The use of OT, PT and ST was studied retrospectively and prospectively in a reference group (n = 106) receiving usual care and in an intervention group (n = 102) receiving advice based on multidisciplinary assessments. A cost analysis was made and the implementation of the advice was evaluated at 6 months. Multidisciplinary assessments consisted of a single consultation by OT, PT and ST each, followed by a multidisciplinary meeting and integrated advice. Volume (frequency times duration) of therapy, relative over- and underuse of therapy and costs of therapy and intervention. Compared to the multidisciplinary advice, there was 40% underuse of OT among patients with neuromuscular disease. For PT, there was 32% overuse and 22% underuse; for ST, there was neither over- nor underuse. Some 40% of patients received once-only advice regarding ST compared to 27% regarding OT and 19% regarding PT. The costs of the multidisciplinary advice were estimated at euro245 per patient. If fully implemented, our multidisciplinary approach would result in a mean cost savings of euro85.20 per patient. The recommended therapy had, however, been implemented only partially at 6 months follow-up. Some patients with a neuromuscular disease do not receive any form of allied healthcare, whereas they should. Among patients with neuromuscular disease who do receive some form of allied healthcare, quite a few receive these treatments for too long periods of time. Ways need to be developed to improve implementation of the multidisciplinary advice and to obtain a more favourable balance between its costs and benefits.
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RESEARCH PAPER
Referral of patients with neuromuscular disease to occupational
therapy, physical therapy and speech therapy: Usual practice
versus multidisciplinary advice
EDITH H. C. CUP
1
, ALLAN J. PIETERSE
2
, SIMONE KNUIJT
3
, HENK T. HENDRICKS
4
,
BAZIEL G. M. VAN ENGELEN
5
, ROB A. B. OOSTENDORP
6
& GERT-JAN VAN DER WILT
7
1
Research Centre of Allied Health Care, Occupational Therapy,
2
Research Centre of Allied Health Care,
Physical Therapy,
3
Research Centre of Allied Health Care, Speech and Language Pathology,
4
Department of
Rehabilitation Medicine,
5
Institute of Neurology, Neuromuscular Centre Nijmegen,
6
Research Centre of Allied Health Care,
Centre for Quality of Care Research (WOK), and
7
Department of Medical Technology Assessment (MTA),
Radboud University Nijmegen Medical Centre, The Netherlands
Accepted June 2006
Abstract
Purpose. To compare the volume of occupational therapy (OT), physical therapy (PT) and speech therapy (ST) as currently re-
ceived by patients with neuromuscular diseases with the volume of OT, PT and ST recommended by a multidisciplinary team.
Method. The use of OT, PT and ST was studied retrospectively and prospectively in a reference group (n ¼ 106) receiving
usual care and in an intervention group (n ¼ 102) receiving advice based on multidisciplinary assessments. A cost analysis
was made and the implementation of the advice was evaluated at 6 months.
Intervention. Multidisciplinary assessments consisted of a single consultation by OT, PT and ST each, followed by a
multidisciplinary meeting and integrated advice.
Outcome variables. Volume (frequency times duration) of therapy, relative over- and underuse of therapy and costs of
therapy and intervention.
Results. Compared to the multidisciplinary advice, there was 40% underuse of OT among patients with neuromuscular disease.
For PT, there was 32% overuse and 22% underuse; for ST, there was neither over- nor underuse. Some 40% of patients received
once-only advice regarding ST compared to 27% regarding OT and 19% regarding PT. The costs of the multidisciplinary advice
were estimated at e245 per patient. If fully implemented, our multidisciplinary approach would result in a mean cost savings of
e85.20 per patient. The recommended therapy had, however, been implemented only partially at 6 months follow-up.
Conclusions. Some patients with a neuromuscular disease do not receive any form of allied healthcare, whereas they should.
Among patients with neuromuscular disease who do receive some form of allied healthcare, quite a few receive these
treatments for too long periods of time. Ways need to be developed to improve implementation of the multidisciplinary
advice and to obtain a more favourable balance between its costs and benefits.
Keywords: Neuromuscular diseases, allied health care, referral practices, resource utilization, occupational therapy,
physiotherapy, speech therapy
Introduction
The prevalence of neuromuscular disease (NMD)
in The Netherlands is estimated at 6.25 per 1,000
(100,000 patients in total). Patients with NMD
constitute a highly heterogeneous group in terms of
incidence, heredity, aetiology, prognosis and func-
tional impairments [1 3]. As a result, it is difficult to
identify which patients will benefit from allied health
services, such as physiotherapy (PT), occupational
therapy (OT) and speech therapy (ST). Patients who
suffer from a rapidly progressive NMD such as
amyotrophic lateral sclerosis (ALS), need multi-
disciplinary assessment and treatment [4]. Most
adult patients suffer from a mildly progressive
NMD, and may requ ire some form of allied health
therapy in primary care. Our impression is that in
current practice, many patients receive PT but only
Correspondence: Edith H. C. Cup, Radboud University Nijmegen Medical Centre, Occupational Therapy 897, PO Box 9101, 6500 HB Nijmegen,
The Netherlands. Tel: þ31 24 3614892. Fax: þ31 24 3619839. E-mail: e.cup@pmd.umcn.nl
Disability and Rehabilitation, May 2007; 29(9): 717 726
ISSN 0963-8288 print/ISSN 1464-5165 online ª 2007 Informa UK Ltd.
DOI: 10.1080/09638280600926702
few patients receive OT or ST. Obviously, referral
patterns play a key role in this respect.
To our knowledge, no guidelines or criteria exist for
referral of patients with NMD to PT, OT or ST in
primary care. As a result, current referral practices
seem arbitrary and show considerable variation. The
issue is further complicated by the paucity of data on
outcome of OT, PT or ST in this heterogeneous group
of patients. Regarding PT, one review examined the
efficacy and safety of strength training and aerobic
exercise training in patients with muscle diseases,
based on two randomized trials. Its major conclusion
is that there is insufficient evidence of its effectiveness
in these patients [5]. There are no controlled clinical
trials of OT in patients with NMD. Two uncontrolled
trials have been conducted, evaluating the effect of a
hand-training programme for patients with myotonic
dystrophy type 1 [6] and Welander distal myopathy
[7]. Both studies showed a positive treatment effect,
but the number of patients in these trials was low
(5 and 12 respectively), and only a limited part of OT
was evaluated. Also with respect to ST in patients with
NMD, no evidence exists of its effectiveness [8].
Results from exploratory studies describing ex-
periences and functional abilities in patients with
different types of NMD, such as muscular dystrophy
[9] or critical illness polyneuropathy [10], may assist
in establishing the best possible treatment and
support in these patients. From such studies, it
may be concluded that a coordinated team approach
is essential for achieving optimal outcomes in
complicated or complex illne ss involving multiple
extremities and/or multiple organ systems, or an
illness that creates disability in the performance of
basic activities of daily life (ADL) [10,11].
To ensure that patients with NMD receive
appropriate OT, PT or ST, we adopted a multi-
disciplinary approach, involving expertise from the
fields of neu rology, rehabilitation medicine, PT, OT
and ST. Apart from the medical diagnosis and
prognosis, an assessment was made of the patients’
limitations in activities and participation. Upon
completion of the assessment, some patients received
advice and did not need further treatment. If further
treatment was advised, the objectives, content, and
expected duration were stated explicitly. In this
paper, we describe our experience with such a
multidisciplinary assessment of patients with NMD
who attended the Neuromuscular Centre Nijmegen.
Current utilization of OT, PT and ST (usual care)
was documented and compared with the utilization
of OT, PT and ST as recommended by the multi-
disciplinary team (experimental care). Specifically,
the following questions were addressed:
. Did recommendations regarding content
and duration of allied care given by the
multidisciplinary team differ from actual allied
healthcare utilization?
. How frequently was only a single consultation,
consisting of assessment and counselling,
considered appropriate?
. How did the patients rate the assessment and
the recommendations for allied healthcare?
. Were the recommendations implemented at six
months follow-up?
. How is the balance between costs and savings
of the intervention?
Methods
Study design
A comparative cohort study was ca rried out with
patients attending the Neuromuscular Centre
Nijmegen. One cohort served as a reference group
and received usual care. A second cohort served as
the intervention group and received multidisciplinary
assessment and advice (Figure 1). The coho rts were
compared at baseline regarding patient characteris-
tics and OT, PT and ST received during the
previous six months (Figure 1: comparison 1). In
the reference group, OT, PT and ST at baseline and
at 6 months follow-up were compared to monitor
changes over time in case of usual care (Figure 1:
comparison 2). In the intervention group, actual OT,
PT and ST utilization at baseline were compared
with recommendations from the multidisciplinary
team (Figure 1: comparison 3). To evaluate changes
as a result of the multidisciplinary assessment and
advice, OT, PT and ST at baseline and at 6 months
follow-up were compared (Figure 1: comparison 4).
Approval for this study was obtained from the
Medical Ethics Committee of the Radboud Uni-
versity Ni jmegen Medical Centre.
Patients
Consecutive patients visiting the Neuromuscular
Centre Nijmegen from July 2002 to June 2003 were
approached for participation. Inclusion criteria were:
(i) probable or definite NMD according to the medical
records; (ii) age 18 years or older; and (iii) sufficient
command of the Dutch language. Patients of the
reference group were recruited from July 2002 until
December 2002. Patients of the intervention group
were recruited from December 2002 until June 2003.
Intervention: Multidisciplinary assessment and advice
The multidisciplinary assessment comprised cons ul-
tation of the OT, PT and ST (in random order)
of the Neuromuscular Centre Nijmegen. The OT
assessment focused on problems in the performance
718 E. H. C. Cup et al.
of daily activities. The OT conducted a client-
centred interview in which the patient was asked to
describe an ordinary day and highlight the problems
encountered in occupational performance. In addi-
tion, the OT observed the patient while performing a
daily task (making a hot drink and a sandwich).
The PT assessment focused on muscle strength,
mobility and balance and its relation to activities like
walking, transferring and lifting and carrying. In a
semi-structured interview problems in performing
these activities were el icited, as well as any prior
attempts to deal with them. Based on the problems
expressed, a set of functional tests like a Berg
Balance scale [12], 6 minute walking distance [13],
analysis of the gait pattern and functional observa-
tions like performi ng transfers and stair climbing
were recorded. At the level of impairment, an
overview of muscle strength, muscle length, joint
mobility, pain and tenderness was obtained. In the
analysis the Rehabilitation Problem Solving (RPS)
form [14] was used to relate disease, impairme nts
and activities and to decide if PT might be beneficial
to the patient.
The ST assessment focused on swallowing and
communication. Following an interview, a standard-
ized assessment of oral motor functioning and
speech was conducted. Also, two quantitative swal-
lowing tests, the dysphagia limit and the timed test,
were used to obtain information about swallowing
abilities [15,16].
After the assessment, all therapists registered
whether there was an indication for further therapy.
If advice was given during the assessment, but there
was no need for further treatment, this was registered
by the therapist as a single advice. When further
treatment was deemed necessary, treatment goals,
treatment modality, and expected duration were
specified.
The findings and recommendations were sum-
marized and discussed during a multidisciplinary
meeting with a neurologist, rehabilitation physician,
occupational therapist, physiotherapist, and speech
therapist. This resulted in an integrated multidisci-
plinary advice regarding appropriate OT, PT and
ST. This advice was sent to the patient and relevant
healthcare professionals (general practitioner, neu-
rologist, rehabilitation physician and allied health
professionals).
Outcome measures
. The 36-item short-form (SF-36) [17] and
Euroqol 5D [18] were used to describe func-
tional health status and valuation of individual
health state, respectively. The SF-36 is com-
posed of 36 questions and standardized
Figure 1. Design of the study. *Comparison 1: Comparison of the two cohorts at baseline in terms of patient characteristics and volume of
OT, PT and ST received in the previous six months (amount of OT, PT and ST at baseline). Purpose: To check for comparability of the two
cohorts at baseline;
{
Comparison 2: Comparison of the volume of OT, PT and ST at baseline with the volume at six months follow-up, when
usual care is given. Purpose: To check for any changes in the volume of allied care in the absence of a specific intervention;
{
Comparison 3:
Comparison of the amount of OT, PT and ST at baseline with the amount advised by the multidisciplinary team. Purpose: To assess
appropriateness of current service provision, by reference to expert opinion. Comparison 4: Comparison of the volume of OT, PT and ST at
baseline with the volume at six months follow-up, following the multidisciplinary advice. Purpose: To assess extent of implementation of
recommendations.
Referral of patients with neuromuscular disease to OT, PT and ST 719
response choices, organized into eight multi-
item scales: Physical func tioning, social func-
tioning, role limitations due to physical pro-
blems, role limitations due to emotional
problems, mental health, vitality, bodily pain
and general health. The scores of the SF-36
scales can range between 0 and 100, with a
higher score indicating a better functional
health status. The Euroqol 5D is composed
of 5 questions on different dimensions of
quality of life: mobility, self-care, usual activ-
ities, pain/discomfort, anxiety/depression. Re-
sponse options vary from 1 3, higher scores
indicating worse quality of life. On an addi-
tional VAS score (0 100) patients rate their
current health status, higher scores indicating
better health status.
. Volume of OT, PT and ST utilization.
Frequency of allied healthcare visits 6 total
treatment duration was used to calculate
volume. The procedure for obtaining these
data is described in more detail bel ow.
. Relative ‘overuse’ or ‘underuse’ of OT, PT
and ST. The difference between actual allied
healthcare utilization and the utilizati on as
recommended by the multidisciplinary team,
where the latter is considered the gold
standard.
. Costs of PT, OT and ST. These were
calculated using standard cost prices for allied
health services (e23.60 per 30-min session)
and consultant care (e98 per hour) in 2003, in
accordance with national guidelines for cost
calculation of health services [19].
. Patients’ rating of the assessments and advice
was evaluated with question naires (described
in more detail below).
Volume of OT, PT and ST
In both groups the volu me (number and duration of
treatment sessions) of OT, PT and ST received was
registered using patient questionnaires. At baseline,
patients were asked to register the amount of OT,
PT and ST received during the previous 6 months.
In addition, patients in the reference group were
asked to register the amount of OT, PT or OT
during the subsequent 8 weeks prospectively. This
amount was extrapolated to 6 months (26 weeks) to
obtain comparable time periods. At six months
follow-up, the patients in the intervention group
retrospectively registered the amount of therapy
received in the preceding 6 months. The number of
allied healthcare visits was categorized as follows:
No sessions, 1 10 sessio ns, 11 25 sessions, 26
52 sessions, and more than 52 sessions. The choice
for the two latter categories was related to a
treatment frequency of once a week (26 sessions
in half a year) or twice a week (52 sessions in half a
year).
To calculate the number of treatment sessions as
recommended in the multidisciplinary reports, the
following assumptions were made:
. The OT often advised 1 5 or 5 10 sessions of
OT, as it was difficult to know exactly how
many sessions were needed. These were rated
as 5 or 10 sessions of 30 min, respectively;
. The PT regularly suggested to gradually
decrease the PT to a lower frequency, e.g.,
from twice a week to once a week or in some
cases to once a month. In such cases, a gradual
decrease of one session per month was
assumed.
. If the PT advised a certain number of PT
sessions followed by a re-evaluation, only the
number of recommended sessions was used in
the calculation;
. If hydrotherapy was suggested, this was
counted as PT only if the need for PT coaching
was specified.
Patients’ rating of the assessments and advice
Patients in the intervention group were asked for
their opinion on the assessments and advice for OT,
PT and ST separately. They were asked whether the
assessment had been valuable for them and why
(not). The reasons for a valuable assess ment
included ‘attention was paid to my problems and
needs’, ‘new information or advice was given’ or
both. If the assessment was not considered valuable,
the patient could specify why. These specifications
included ‘I do not experienc e problems or needs’,
‘I did not receive new information or advice’ or other
reasons. Patients were also asked whether or not they
agreed with the advice given by the OT, PT and ST
respectively.
Statistical analysis
An independent t-test was used to test whether there
were significant differences in age between the two
groups. A Mann-Whitney Test was used to test
whether there were significant differences between
the groups in medical diagnosis, duration of the
complaints, generic health status and quality of life.
Descriptive statistics (percentages) were used to
describe the amount of OT, PT or ST received,
and differences between groups were tested using a
Mann-Whitney test. A Wilcoxon test was used to test
for significant differences between the amount of
therapy received at baseline and at 6 months for both
groups.
720 E. H. C. Cup et al.
Results
Patients
For the reference group, medical records of 250
eligible patients were reviewed; 144 patients did not
meet the inclusion criteria (Figure 2). The main
reason was the absence of a probable or definite
neuromuscular disease. Many patients were still in
the diagnostic phase. Other reaso ns included age
(younger than 18) or commun ication problems
(insufficient command of the Dutch language). Of
the 106 patients included in the reference group, 87
returned the healthcare diary. For the intervention
group, medical records of 257 eligible patients were
reviewed; 155 patients were excluded for the same
reasons as in the reference group. Of the 102 patients
who participated, 88 returned the questi onnaire
reporting the amount of therapy received in the
previous 6 months.
Baseline characteristics revealed no significant
differences between the two groups in age, medical
diagnosis, duration of the complaints, generic health
status, quality of life or amount of OT, PT and ST
received during the previous 6 months (p 4 0.05)
(Tables I and II). The mean age was 47 years (SD
15) and 49 years (SD 13) for the reference group and
intervention group respectively. The male/female
distribution was 57/49 in the reference group 51/51
in the intervention group. In both groups all NMD
categories (diso rders of the motor neuron, motor
nerve root, peripheral nerve, neuromuscular trans-
mission and muscles) were included, with the
Figure 2. Inclusion and follow-up of patients.
Referral of patients with neuromuscular disease to OT, PT and ST 721
majority suffering from a muscle disease (54% in the
reference group and 67% in the intervention group).
The duration of the complaints lasted a year or more
in the majority of the patients in both groups
(495%). The SF-36 dimensions Physical function-
ing, Role limitations due to physical problems and
General health had the lowest scores (mean scores
below 50 with high standard deviations), indicating
substantial, though variable physical problems in
both groups. The Problems in mental health or Role
limitations due to emotional problems had the
highest scores, indicating least problems in these
areas. The Euroqol 5D showed similar results with
problems in all dimensions, but the least in the
dimension Anxiety/depression (Table I). The mean
health status in the Euroqol was 62 (SD 17) and 60
(SD 18) for the reference group and intervention
group, respectively.
The volume of OT, PT and ST at baseline was
similar in both groups: Less than 10% had received a
short period of OT; 32% (reference group) and 40%
(intervention group) of the patients had received PT,
most of them more than once a week; and there were
hardly any patients that had had ST in the past
6 months (Table II).
Multidisciplinar y assessment and advice
After the OT assessments (n ¼ 102), 44 patients
(43%) received advice for further treatment and 28
patients (27%) received a single advice. The PT
assessments (n ¼ 102) resulted in an indication for
further treatment in 46 patients (45%) and an
indication for a single advice in 19 patients (19%).
After the ST assessments (n ¼ 102), six patien ts (6%)
were advised to have further ST and 41 patients
(40%) received a single advice.
Patients’ rating of the assessments and advice
Most patients valued the OT, PT or ST assessments
highly (Table III), giving as main reason that they
appreciated the attention paid to their specific
problems and needs, or that they were given new
information or advice. Patients often mentioned both
reasons. Other reasons for a positive assessment were
that patients were pleased for having been examined
so thoroughly and that they were relieved for still
doing reasonably well.
Reasons for not appreciating the assessment were
that the advice was difficult to implement or patients
did not feel that their problems were taken seriously.
Table I. Characteristics of the reference group and the intervention
group.
Reference
group
n ¼ 106
Intervention
group
n ¼ 102
Age (years)
Mean/standard deviation/range 47/15/20 83 49/13/20 73
Gender
Male/female 57/49 51/51
Medical diagnosis
Motor neuron disorders 9 8
Motor nerve root disorders 11 4
Peripheral nerve disorders 20 15
Neuromuscular transmission
disorders
97
Muscle disorders 57 68
Muscular dystrophy/Myopathy/
Myositis
32/19/6 39/21/8
Duration of complaints
0 6 months/6 12 months/
412 months
2/5/99 3/4/95
Generic health status (SF 36) mean (SD)
Physical functioning 37 (26) 33 (27)
Social functioning 70 (24) 68 (25)
Role limitations physical 48 (41) 39 (39)
Role limitations emotional 78 (39) 69 (42)
Mental health 74 (17) 72 (18)
Vitality 55(18) 51 (20)
Bodily pain 70 (28) 65 (30)
General health 45 (21) 42 (22)
Quality of Life (EQ-5D) mean (SD)
Mobility 1.9 (0.4) 1.9 (0.4)
Self-care 1.5 (0.6) 1.5 (0.6)
Usual activities 1.8 (0.5) 1.9 (0.4)
Pain/discomfort 1.8 (0.5) 1.9 (0.5)
Anxiety/depression 1.2 (0.4) 1.2 (0.5)
Health status 62 (17) 60 (18)
*p 5 0.05.
Table II. Amount of therapy at baseline for the reference group
and the intervention group.
Reference
group
n ¼ 106
Intervention
group
n ¼ 102
Baseline Occupational Therapy
0 sessions 96 93
1 10 sessions 7 8
11 25 sessions 2 1
26 52 sessions 1 0
452 sessions 0 0
Baseline Physical Therapy
0 sessions 72 61
1 10 sessions 1 5
11 25 sessions 13 11
26 52 sessions 17 21
452 sessions 3 4
Baseline Speech Therapy
0 sessions 101 101
1 10 sessions 5 0
11 25 sessions 0 1
26 52 sessions 0 0
452 sessions 0 0
*p 5 0.05.
722 E. H. C. Cup et al.
At least 95% of the patients agreed with the advice
given for OT (99%), PT (95%) and ST (100%).
Volume of OT, PT and ST
In the reference group, the volume of OT, PT or ST
received during the 6 months before inclusion in the
study (baseline) and at 6 months follow-up were not
significantly different (Table IV). In the intervention
group, there was a significant underuse of OT in
40% of the patients and hardly any overuse of OT.
The mean difference between the usual and recom-
mended amount of OT was 2 sessions per patient in
6 months (underuse). There was a significant
underuse of PT in 22% of patients and overuse in
32%, with a net mean difference of 6 sessions per
patient (overuse). There was limited underuse and
overuse of ST (Table V).
Table VI shows the number and distribution of
therapy sessions received over 6 months in the
intervention group. It was recommended that more
patients should have a short course of OT, PT and
ST. Compared with the amount of PT received at
baseline, the multidisciplinary advice amounted to a
reduction of the number of PT sessions. Comparison
of therapy received at baseline with that at 6 months
follow-up revealed a non-significant reduction of PT
and a significant increase of OT and ST ( Table VI).
At baseline, fewer than 10% of patients had had a
short course of OT; at 6 months, this number
exceeded 25%. The number of patients receiving
1 10 sessions of PT increased from nearly 5% at
baseline to more than 11% at 6 months. For ST,
only 1% of patients had received a short course of ST
at baseline, whereas this number rose to more than
10% at 6 months. The data for the 6-month
follow-up sho wed that the therapy advice was only
poorly implemented (Table VI).
Impact of the multidisciplinary advice
on healthcare costs
The costs of the multidisciplinary assessments and
integrated advice were assumed to consist of
personnel costs only, and were estimated at e245
per patient. Each PT and OT assessment lasted an
hour and the mean duration of the ST assessment
was half an hour. Reports took about half an hour to
write. Using the cost price of e23.60 for half an hour,
the cost of the allied health assessment and report-
ing were 8623.60 ¼ e188.80. The multidisciplinary
meeting lasted 10 min per patient, leading to a cost
of e23.60 for the allied health professionals (OT, PT
and ST) and e32.67 for the consultants (neurologis t
and rehabil itation phys ician).
Table III. Patient appreciation of their assessment.
Occupational
Therapy
(n ¼ 89)
Physical
Therapy
(n ¼ 86)
Speech
Therapy
(n ¼ 88)
Valuable
. Because attention
was paid to my
problems and needs
40.4% 44.2% 28.4%
. Because new information
or advice was given
10.1% 11.6% 12.5%
. Because of both of the
foregoing reasons
32.6% 29.1% 28.4%
. For other reasons 0% 4.7% 3.4%
Total 83.1% 89.5% 72.7%
Not valuable
. No problems or needs 12.4% 2.3% 25%
. No new information
or advice
1.1% 3.5% 2.3%
. For other reasons 3.4% 4.7% 0%
Total 16.9% 10.5% 27.3%
Table IV. OT, PT and ST received by the reference group in the 6
months preceding the study and in the subsequent 6 months.
Number of treatment
sessions
Reference group
Previous 6 months
(n ¼ 106)
Reference group
Following 6 months
(n ¼ 87)
Occupational Therapy*
0 90.6% 93.1%
1 10 6.6% 5.7%
11 25 1.9% 1.1%
26 52 0.9% 0%
452 0% 0%
Physical Therapy
{
0 67.9% 59.8%
1 10 0.9% 2.3%
11 25 12.3% 12.6%
26 52 16.0% 25.3%
452 2.8% 0%
Speech Therapy
{
0 95.3% 97.7%
1 10 4.7% 1.1%
11 25 0% 0%
26 52 0% 1.1%
452 0% 0%
*p 4 0.1 for the volume of OT;
{
p 4 0.05 for PT;
{
p 4 0.7 for ST.
Table V. Percentage of overuse and underuse of OT, PT and ST
and the overall mean difference between amount of therapy
received at baseline and the amount advised by OT, PT and ST
(n ¼ 102).
Occupational
Therapy
Physical
Therapy
Speech
Therapy
Overuse 2% 32% 1%
Neutral 58% 46% 94%
Underuse 40% 22% 5%
Mean difference 2.1 (4.0) 6.1 (15.2) 0.4 (2.6)
(Standard deviation) Under-use Over-use Under-use
Referral of patients with neuromuscular disease to OT, PT and ST 723
Comparing the costs of current practice (OT, PT
and ST at baseline) and the costs of the recom-
mended therapy showed that recommended practice
could lead to mean cost savings of e85.20 per patient
(mean increase of 2.1 OT sessions and 0.4 ST
sessions and mean decrease of 6.1 PT sessions per
patient). However, at 6 months the recommenda-
tions were only partially implemented. While the
mean amount of OT received had increased by 1.60
sessions per patient, the mean amount of ST
received had increased by 0.1 sessions per patient
and that of PT had decreased by 0.8 sessions per
patient. The actual amount of OT, PT and ST
received at 6 months increased costs by e21.24 per
patient in addition to the costs of the multidi sciplin-
ary assessment and advice.
Discussion
In this study we compared the volume of OT, PT
and ST in NMD currently received with the volume
recommended by an expert multidisciplinary team.
In the absence of scientific and solid empirical
evidence (a gold standard) regarding the most
appropriate volume of allied health care for patients
with NMD, this ‘expert advice’ was considered as
‘next-best’ standard of reference.
Our results show that the expert advice regarding
the volume of OT, PT and ST differed considerably
from the actual service provision among patients with
NMD. According to the expert advice, far more
patients would need a short course of therapy or
advice during a single consultation. In this article we
use the terms ‘overuse of ‘underuse’ to describe the
difference between the actual volume of OT, PT and
ST and the recommended volume. For sake of
brevity, we have used these terms in our paper,
although these terms imply a standard of care that is
presently unavailable.
Regarding OT, there was a substantial ‘underuse’
of OT in current practice compared to the recom-
mended volume of OT. This underuse is confirmed
in an inventory of allied health care for chronically
disabled in The Netherlands [20]. An unmet need
for OT among patients with diseases of the nervous
system is reported. Reasons for this unmet need
include: (i) lack of awareness in patients and
referring physicians of what OT has to offer;
(ii) problems with referral (too late or not at all) in
one third of the patients; (iii) problematic OT
funding by health insurance companies for about
46% of chronic conditions; and (iv) the poor
availability of OT in primary care [20]. These
reasons may also explain the difficulties experienced
to implement the expert advice.
Compared to the recommended volume of PT,
there was ‘overuse’ as well as ‘underuse’ of PT in
current pr actice. PT overuse was often the result of a
higher frequency and duration of PT in current
practice than suggested in the expert advice. Instead
of continuous PT, a short course of PT was advised
to address specific treatment goals, such as instruc-
tions to the patient how to maintain an optimal
physical condition with an individual exercise pro-
gramme. It appears that patients are insufficiently
aware that they can cont inue exercises on an
individual basis, not necessarily requ iring profes-
sional supervision [20]. In our study often 6 8 PT
sessions were advised, after which patients were
encouraged to further carry out the exercises by
themselves. A comparable PT approach, with 6 8
sessions, was described in a study on the implemen-
tation of clinical guidelines for patients with low back
pain [21].
In current practice there was also ‘underuse’ of
PT. This was the case when patients did not have
PT, but the multidisciplinary team recommended
that they received instruction and advice within a
single consultation or within a short episode of PT.
The Dutch inventory of allied healthcare reports that
it is difficult to generalize about the need for PT in
chronic conditions and that the duration of therapy
depends on the results of therapy, the age of the
patient and the type of health problems [20].
Table VI. Volume of OT, PT and ST in the intervention group
during the 6 months preceding study entry, based on the advice
and at 6 months.
Number of
treatment
sessions
Intervention
group at
baseline
(n ¼ 102)
Intervention
group based
on advice
(n ¼ 102)
Intervention
group at
6 months
(n ¼ 88)
OT sessions 63 281* 177
{
0 91.2% 55.9% 72.7%
1 10 7.8% 44.1% 22.7%
11 25 1.0% 0% 2.3%
26 52 0% 0% 2.3%
452 0% 0% 0%
PT sessions 1333 708* 1011
0 59.8% 51% 58.0%
1 10 4.9% 24.5% 11.4%
11 25 10.8% 13.7% 9.1%
26 52 20.6% 9.8% 19.3%
452 3.9% 1.0% 2.3%
ST sessions 12 48 23
{
0 99% 94.1% 88.6%
1 10 0% 3.9% 10.2%
11 25 1.0% 2.0% 1.1%
26 52 0% 0% 0%
452 0% 0% 0%
*p 5 0.01 for the volume of OT (p ¼ 0.00), PT (p ¼ 0.00) and ST
(p ¼ 0.17) retrospectively measured compared to the volume based
on the advice;
{
p 5 0.05 for the volume of OT (0.01), PT (0.55)
and ST (0.05) retrospectively measured at baseline compared to
the volume retrospectively measured at 6 months follow-up.
724 E. H. C. Cup et al.
Patient organizations have pointed out that phy-
siotherapists have insufficient knowledge concerning
more than half of the 74 chronic conditions for which
PT is indicated. Also physiotherapists themselves feel
that they lack expertise in 70% of chronic conditions.
Besides, in 30% of the chronic conditions for which
PT is indicated, the coordination of the care of
different professionals is considered a problem [20].
These findings support the need of an integrated
multidisciplinary approach.
There was some ‘underuse’ of ST when compar-
ing the volume of ST recommended in the expert
advice with current volume of ST. A considerable
number of patients received information, instruction
and advice on problems with eating and drinking and
communication duri ng a single ST consultation.
Generally an unmet need for ST is estimate d in
patients with chronic progressive neurological con-
ditions with voice or speech disorders, hearing
disorders, breathing problems and generally com-
munication problems [20]. It is remarkable that
problems with sw allowing or chewing (eating and
drinking) are not reported in the Dutch inventory of
allied healthcare. Patients with chronic progressive
neurological conditions such as NMD regularly
experience such problems. The speech therapists
working at the neuromuscular centre of Nijmegen
have specific expertise in the diagnosis and provision
of advice regarding these problems [22 24].
Patient organizations and speech therapists both
feel that generally speech therapists lack knowledge
about chronic conditions. Besides, patients are not
aware of what ST has to offer and referring
physicians lack insight into when a patient should
be referred for ST [20].
Our findings and the reported problems regarding
OT, PT and ST for chronic conditions [20], support
the value of an integrated multidisciplinary expert
advice regardi ng appropriate allied healthcare for
patients with NMD. Also, the majority of the
patients rated the multidisciplinary assessments and
advice positively.
Obviously, the implementation of treatment re-
commendations could be improved. Reasons for
poor implementation include limited awareness
among patients and referrin g physicians, and pro-
blems with referral, availab ility and funding. Addi-
tionally, there may be problems with the feasibility of
the advice, limited motivation to cha nge routines or
limited knowledge and skills of therapists to imple-
ment the advice. These causes have been explored
and will be analysed and published together with
possible ways to obtain a stronger commitment on
the part of allied health services in primary care.
Although the multidisciplinary assessment re-
sulted in a decrease in the cost of allied health
services, these savings were offset by the extra costs
incurred by the multidisciplinary assessments.
Clearly, ways need to be found to obtain a more
favourable balance between the costs and savings of
the multidisciplinary approach.
Limitations of this study include pos sible recall
bias of the volume of allied healthcare. Still , we
preferred patient questionnaires above patient re-
cords since the latter did not provide reliable
information on this subject.
Secondly, one could question whether service
utilization during an eight-week period may be
extrapolated to 26 weeks. However, the amount of
OT, PT and ST measured retrospectively with a
patient questionnaire did not differ significantly with
the amount measured prospectively with a healthcare
diary for eight weeks and extrapolated to six months.
We therefore felt that it was justifiable to conclude
that the amo unt of OT, PT and ST did not change in
the usual care group.
On the basis of our findings, we cannot comment
on the effect of the intervention on patients’ health
status in terms of functional status or quality of life,
because this would require a different study design
and different outcome measures. Such studies are
very much needed.
Acknowledgeme nts
The study was financially supported by a grant from
the College for Care Insurances in The Netherlands,
DO-project 01223. Thanks are given to Rosella PM
Hermens, Centre for Quality of Care Research
(WOK), Sieberen P van der Werf, Medical Psychol-
ogy, Marten Munneke, Allied Health Occupations,
Institute for Neurology, Jessica Berenbroek, Centre
for Quality of Care Research (WOK) and Tilly
Pouwels, Medical Technology Assessment (MTA)
for their support during the research. Also thanks are
expressed to the allied health professionals who
participated in this study: Yolanda van den Elzen-
Pijnenburg and Mabel van Esch, occupational
therapists, Jessica Pastoor, physical therapist, Bert
de Swart, Hanneke Kalf, and Janne ke Weikamp,
speech and language therapists of the Radboud
University Nijmegen Medical Centre. Special thanks
are expressed to all the patients, who willingly gave
their time to parti cipate in this study.
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