People including myself have tried to summarise in English some of the data
from the following report:
(Reference given in both the French- and Dutch-language documents):
Conseil d'accord. Rapport d’évaluation (2002-2004) portant sur l’exécution
des conventions
de rééducation entre le Comité de l'assurance soins de santé
(INAMI) et les Centres de référence pour le Syndrome de fatigue chronique
(SFC). 2006. Available
from:
http://www.inami.fgov.be/care/fr/doctors/specific-information/sfc-cvs/sfc-cv
s04.htm
As one can see, this was a report on a major venture - more CFS patients did
CBT and GET at these centres than for example all the patients in the PACE
Trial (or more than twice the number doing CBT or GET in the PACE trials (as
it's a four-armed trial)).
It can be found at:
http://www.kce.fgov.be/index_nl.aspx?SGREF=5260&CREF=11643
OR
http://www.kce.fgov.be/index_fr.aspx?SGREF=3228&CREF=11646
For simplicity, I've included all of Chapter 6 (Belgian Data) except the
footnotes.
For anyone interested in CBT and GET for CFS, it includes some interesting
data - I have highlighted some quotes at the top as a lot of people probably
won't read the full piece.
I've added one footnote pointing out that "In accordance with the
convention, significant improvement in the
socioprofessional functioning of the patients is one of the objectives of
the re-education/re-training." (this summary tries to claim this was not the
case after they got "bad" results).
Tom Kindlon
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Selected quotes (chosen by Tom) that summarise the clinics and the findings:
"Of the patients with confirmed diagnosis of CFS (N=862), 79% were
considered
to becandidates for an interdisciplinary rehabilitation program in the
reference
centre."
"The interdisciplinary treatments at the reference centres that were
finished
before January 1st , 2005, comprised on average per patient 41 to 62 hours
of
rehabilitation,
spread over 6 to 8 months (and in one centre 12 months), depending on the
reference
centre. One session lasted 1 hour to 1 hour ½. The largest part of the
rehabilitation
(50%) was provided by physiotherapists; 37% was provided by psychologists.
Psychiatrists and rehabilitation specialists provided respectively 3.6% and
4.2% of the rehabilitation, and social workers 3.2%."
The systematic outcome registration in the four centres revealed that the
main
complaint of the patients, their fatigue, had improved significantly at the
end of the
therapy and 6 months later.
Results concerning the patients’ quality of life were conflicting: for one
group of patients
there was a significant improvement as compared to the start of the therapy,
for
another group of patients this could not be confirmed. However, for all
patients the
average quality of life was still below the level of healthy adults.
At the beginning of the rehabilitation, many patients presented with
psychological
problems or psychiatric co-morbidities (e.g. depressive feelings, somatic
complaints,
anxiety etc). Their average outcome fell outside the range of healthy
adults, but did not
reach the level of an average outpatient psychiatric population. Although at
the finish of
the treatment they were improved, their results on psychological evaluation
were still
outside the normal range.
Physical capacity (maximal or sub-maximal according to the patient’s
possibilities) did
not change between start and end of the treatment.
Employment status decreased at the end of the therapy, from an average of
18.3% of a
38h- working week, to 14.9%. However, it should be noticed that this was not
one of
the preset goals of the interdisciplinary treatment, and that no specific
occupational
rehabilitation was foreseen. The percentage of patients living from a
sickness allowance
increased slightly from 54 to 57%."
"Treatment was ended in only 2.8% of the cases by the patient himself, so
the
motivation
of the patients for the treatment seemed to be high. In 71% the team
considered the
patient to have reached his maximal capacity — although no patient had been
cured."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
6 BELGIAN DATA
6.1 INTRODUCTION
In 2000, a Working Group of the Superior Health Council formulated problems
existing
in the care of CFS-patients in Belgiumg. Four main domains were mentioned:
• Costs for patients as well as society were important;
• CFS patients were threatened by an inconstant social situation;
• CFS patients suffered by the lack of recognition of the medical world,
probably due to a lack of consensus on the disorder;
• Working conditions were often maladjusted to the reduced capacities
of CFS patients.
Following this report, the Minister of Social Affairs, F. Vandenbroucke,
asked the
RIZIV/INAMI to establish rehabilitation agreements for CFS reference
centres. From
April 1st 2002 on, four reference centres for adults and one for children
were started
up.
In 2006, an evaluation report describing the activities and patient outcome
of the
reference centres was published167 by the RIZIV/INAMI Akkoordraadh. This
report will
be summarized in the section 6.2, and will be the main reference for the
Belgian data on
CFS.
The reason for this is that other forms of care for these patients are
difficult to trace:
medical diagnosis in ambulatory care (e.g. consultation of general
practitioner or
medical specialist; ambulatory physiotherapy) is not routinely registered in
Belgium; and
hospital registration is according to the ICD-9-CM, which does not yet
include
“Chronic Fatigue Syndrome” as a medical diagnosis. Psychotherapy in private
practice is
not reimbursed by the national health insurance, and even more difficult to
trace;
whereas psychological support in “Centra voor Geestelijke Gezondheidszorg/
Services
de Santé Mentale” is not organised by the Federal State but by the
Flemish/Walloon/Brussels Region.
However, additional information was obtained from the RIZIV/INAMI (Dienst
voor
Uitkeringen) on the number of Belgian CFS patients that currently receive a
support
under the Disability Scheme, and on the budgets allowed to the reference
centres by
the RIZIV/INAMI (see section 6.3.).
6.2 SUMMARY OF THE RIZIV/INAMI REPORT (2006)167
6.2.1 Reference centres: tasks and financing
In the starting phase of the reference centres, a link to University
hospitals where
knowledge on the CFS syndrome was more readily available and research could
be
performed, was preferred.
The main tasks of the five CFS reference centres (four for adults and one
for children)
started up from April 1st 2002 on, are (RIZIV/INAMI report p 3– p 61):
a. to give advice on diagnosis of possible CFS patients which are too
complex to be diagnosed by the first and/or second line services;
b. to provide time limited therapy for CFS patients that are difficult to
treat
by the first and/or second line services, or in case it is not clear how the
patient should be treated. The therapy should be evidence-based, i.e. CBT
and GET are to be included. Patients should be referred back as soon as
possible;
c. to offer interdisciplinary services, providing a coordinated and
patientcentred
approach; the diagnostic services should be on an ambulatory
basis;
d. to inform, support and teach first and second line services on CFS, so as
to make future organisation of most of the care for CFS patients on the
first and second level possible under coordination of the patient’s general
practitioner. In this way, affordable services should be offered to CFS
patients, as close to their living places as possible;
e. to advise the RIZIV/INAMI on how to organise this care in an affordable
way in the first and second level in the future.
Financing of the system includes four “forfaits” (lump sum):
• a lump sum for the initial multidisciplinary evaluation of the centre;
• a monthly lump sum for the interdisciplinary rehabilitation; which can
be paid maximum 6 times during a time period of maximum 12
months;
• a lump sum for a general practitioner (GP) attending his patient’s
rehabilitation session (“GP participation session”)
• a lump sum for a team member attending a meeting of GPs organised
by one of the patient’s GP (“team member extra muros participation
session”)
For each of the reference centres, a “normal” patient capacity is agreed on;
centres can
go beyond their normal capacity but at a reduced tariff. The normal yearly
capacity for
the four adult centres together is 407 full rehabilitation programs (407
times six
monthly lump sums for interdisciplinary rehabilitation); it includes 18.25
FTE (full time
equivalents). For the children’s centre, the normal yearly capacity is 36
full rehabilitation
programs, including 1.75 FTE.
6.2.2 Reference centres: general organisation
Patients should be referred by a medical doctor, a standard referral form
should be
filled out including demographic, medical and (psycho-)social information,
and
information on the professional situation of the patient; results of
diagnostic evaluations
should be included.
A first outpatient consultation by a medical specialist in internal medicine
(for the
children <18 years: paediatrician) should avoid that patients who clearly
don’t fulfil the
CFS diagnostic criteria (CDC criteria, Fukuda 1994; adapted for children17),
remain
unnecessary on a waiting list. Next, a multidisciplinary evaluation by a
psychiatrist,
specialist in internal medicine (for additional diagnostic evaluation if
necessary) and a
rehabilitation specialist as well as other team members take place. For the
children, this
evaluation is performed by a child psychiatrist, a paediatrician, a master
in educational
sciences and a physiotherapist. A definite diagnosis is worked out, and
psycho-diagnostic
data using a semi-structured interview and questionnaires are gathered.
Maximal or submaximal
physical capacity, according to the patient’s possibilities, is measured.
Based on this multidisciplinary evaluation, a therapeutic program is
proposed to the
patient and communicated to his GP. This program can take place at the first
or second
care level, or at the reference centre itself.
In the last case, re-evaluation takes place at the end of the program, and
the reason why
the program is finished is noted. Re-evaluation is repeated at 6 and 12
months’ followup.
Since evaluation of the centres’ activities and of the patients’ outcome was
estimated to
be important during the starting years of the reference centres, especially
because
knowledge on organisation of care for CFS largely was lacking, a general
registration
system167 was agreed on, and administrative support for the registration was
provided
to the centres.
6.2.3 Reference centres for adults: evaluation of results.
The four reference centres were evaluated for the period of April 1st, 2002
till
December 31st, 2004.
After an initial starting phase, all three Dutch speaking reference centres
reached their
normal yearly capacity, and even their maximal capacity, so that long
waiting lists were
created. The French speaking reference centre reached only 50% of its normal
capacity.
For all 4 centres, only rarely services were not provided ambulatory,
although inpatient
treatment is possible according to the RIZIV/INAMI agreement.
6.2.3.1 Adults: Diagnostic phase
Between April 1st, 2002 and December 31st, 2004, 1 655 patients entered the
reference
centres for the first outpatient consultation. After this first
consultation, 94% of the
patients seen were considered to be a possible CFS-patienti. In 96% of these
patients
(N=1 087), the diagnosis was confirmed after the multidisciplinary
evaluation. According
to the RIZIV/INAMI report, an explanation for this high number could be that
64% of
the referred patients indicated that they had already been treated before
for CFS.
Another explanation could be that GPs and second-line medical specialists
are highly
competent in making the diagnosis of CFS. However, it should be noted that
84% of the
referring medical doctors only referred one patient.j The average age of the
patients
who were diagnosed with CFS, was 40 years 8 months; 41% of the patients were
between 40-49 years old. The average duration of the fatigue was 4 years 10
months,
and 38% of the patients were already fatigued for more than 5 years. About
87% were
female, and 10% of the CFS patients had at the time of initial evaluation a
full-time and
14% a part-time job. About 26% stated to have some income out of own
professional
activities; 39% had a partner with an income, and 54% had a sickness
allowance.
The diagnostic phase in the reference centres (first outpatient consultation
followed by
multidisciplinary evaluation) took a long time: 4 to 5 months between first
consultation
and start of the rehabilitation treatment. It should be mentioned, that in 3
of the 4 adult
centres, the first outpatient consultation already comprised an advice by a
medical
specialist in internal medicine as well as a psychiatrist. This seems an
overlap with the
next phase of the evaluation, namely the multidisciplinary team “bilan”.
Of the patients with confirmed diagnosis of CFS (N=862), 79% were considered
to be
candidates for an interdisciplinary rehabilitation program in the reference
centre. For
30%, advice and education of the patient and/or his caregivers including
first- and
second level professionals, was proposed (additionally). At least 25%
received a special
referral to the physiotherapist, for 60 sessions at a reduced tariff
(“F-list”); this could be
after the interdisciplinary treatment was finished. It should be noted that
all centres
organised general educational sessions for family and relatives, although
for this activity
no reimbursement had been foreseen.
6.2.3.2 Interdisciplinary treatment of adults: characteristics and outcome
The interdisciplinary treatments at the reference centres that were finished
before
January 1st , 2005, comprised on average per patient 41 to 62 hours of
rehabilitation,
spread over 6 to 8 months (and in one centre 12 months), depending on the
reference
centre. One session lasted 1 hour to 1 hour ½. The largest part of the
rehabilitation
(50%) was provided by physiotherapists; 37% was provided by psychologists.
Psychiatrists and rehabilitation specialists provided respectively 3.6% and
4.2% of the
rehabilitation, and social workers 3.2%. For each 30 days of rehabilitation
provided, an
average of 6.4 group interventions (83%) were provided, and 1.2 individual
interventions
(17%).
For all 4 centres together, only twice had a general practitioner attended a
rehabilitation session of his patient and only once had a lump sum be paid
for a team
member attending an extra muros GP conference (however, some teaching
activities
were organised without claiming the lump sum).
89% of the rehabilitation interventions in the centres were stopped because
of “end of
the RIZIV/INAMI reimbursement period”; for 71% of the patients the team
estimated
that the maximal result for the patient had been reached, although no
patient was
considered to be totally cured. Only 2.8% of the treatments were stopped by
the
patient, who generally speaking seemed very motivated to follow the therapy.
Subjective complaints, quality of life, psychological co-morbidities,
physical capacity and
employment status were evaluated extensively at the beginning and at the end
of the
treatment period, and after respectively 6 and 12 months follow-up. For the
full list of
outcome instruments, and for the statistical tests used, see the RIZIV/INAMI
document.
Although drugs used by the patients in the four centres had been registered,
only
general information on this part of the therapy is given in the evaluation
report.
The systematic outcome registration in the four centres revealed that the
main
complaint of the patients, their fatigue, had improved significantly at the
end of the
therapy and 6 months later.
Results concerning the patients’ quality of life were conflicting: for one
group of patients
there was a significant improvement as compared to the start of the therapy,
for
another group of patients this could not be confirmed. However, for all
patients the
average quality of life was still below the level of healthy adults.
At the beginning of the rehabilitation, many patients presented with
psychological
problems or psychiatric co-morbidities (e.g. depressive feelings, somatic
complaints,
anxiety etc). Their average outcome fell outside the range of healthy
adults, but did not
reach the level of an average outpatient psychiatric population. Although at
the finish of
the treatment they were improved, their results on psychological evaluation
were still
outside the normal range.
Physical capacity (maximal or sub-maximal according to the patient’s
possibilities) did
not change between start and end of the treatment.
Employment status decreased at the end of the therapy, from an average of
18.3% of a
38h- working week, to 14.9%. However, it should be noticed that this was not
one of
the preset goals of the interdisciplinary treatment, and that no specific
occupational
rehabilitation was foreseen. The percentage of patients living from a
sickness allowance
increased slightly from 54 to 57%.
6.2.4 Reference centre for children: evaluation of results
The reference centre for children was also evaluated for the period of April
1st, 2002 till
December 31st, 2004.
Although it had been estimated that in Belgium about 8 000 children would
suffer for
CFS, the centre never reached its normal capacity (36 full rehabilitation
programs
yearly); it reached only 40% in 2004.
100% of all patients seen in the first mono-disciplinary outpatient
consultation, were
estimated to meet criteria for “possible” CFS syndrome (N=56). After
thorough
diagnostic evaluation, only 37%, or 19 patients, got a definitive diagnostic
label of CFS,
because of uncertainty about the diagnostic definition for children and
because the team
tried to avoid this “label”, for which no aetiology or definite cure exists.
Fourteen of
these patients started interdisciplinary treatment in the centre. For
children, the centre
aimed to organize this treatment as much as possible in the children’s home
environment, in collaboration with local services and the school.
Children generally improved more than adults, as has been described in the
literature
(see chapter 4). However, due to the small number of participants, no
statistical
calculations were performed.
It should be mentioned that in 1999, the rehabilitation centre
“Zeepreventorium” in De
Haan, specialized in residential rehabilitation for children and adolescents
(e.g.
mucoviscidosis, asthma, obesitas) also started residential rehabilitation
for adolescents
(12-18 years) suffering from CFS. Only patients not able of following
ambulatory
rehabilitation in their own neighbourhood are accepted. The maximal
treatment
duration, provided by a multidisciplinary team, is 6 months. By the end of
April 2008, 38
CFS adolescents had been treated.
6.2.5 Belgian CFS reference centres: conclusions and discussion
6.2.5.1 Adults
Based on available epidemiological data for other countries, it can be
estimated that
about 20 000 Belgian adults suffer from CFS.
Between April 1st, 2002 and December, 31st 2004, 1 655 patients entered the
reference
centres, but in three centres, long waiting lists exist. For more than 90%
of the patients,
the diagnosis of CFS was confirmed. Most referred patients had been fatigued
since a
long time (average of 4.10 years), and had psychological problems or
psychiatric comorbidities,
although the level of an average outpatient psychiatric population was not
reachedk.
Approximately 80% of the CFS patients followed an interdisciplinary program
in the
centre; the time between initial outpatient consultation and start of the
rehabilitation
was on average 4 to 5 months. A solution should be found for this long time
period, as
well as for the overlap in service between the first outpatient consultation
and the
multidisciplinary team “bilan” (evaluation).
Although the referring medical doctor was informed by phone or letter, as
usual among
physicians, very few other initiatives to develop a collaborative care for
the patient
between the first or second line and the reference centres, were explored.
One of the
initial aims of the project, to develop a three-level system in which many
or even most
of the patients would be treated in the first or second level, as close to
their living place
as possible, was not reached. It is clear that other pathways should be
tried out to
reach this goal.
Treatment was ended in only 2.8% of the cases by the patient himself, so the
motivation
of the patients for the treatment seemed to be high. In 71% the team
considered the
patient to have reached his maximal capacity — although no patient had been
cured.
Therapy provided systematically included CBT and GET. After treatment
duration of 41
to 62 hours of rehabilitation per patient of which 83% group based, spread
over 6 to 12
months, patients’ subjective feelings of fatigue were improved, but results
concerning
quality of life were equivocal. Psychological problems or psychiatric
co-morbidities
improved, but still fell outside the range of healthy adults. Physical
capacity did not
change; employment status decreased at the end of the therapy. It is
difficult however,
to judge these results, since no control group had been included.
6.2.5.2 Children and adolescents
A limited number of children has been seen or treated so far, and the
capacity of the
children’s team is not yet reached. The children’s team provided an
integrated service,
directly in the child’s own environment as much as possible. Apart from this
ambulatory
service, residential treatment for adolescents (12-18 years) is possible in
the children’s
rehabilitation centre “Zeepreventorium” in De Haan (Flemish region).
Research on treatment for adolescents and children is much more limited than
research
for adults. Only in 2007 (NICE guidelines), a clear proposal has been agreed
on for time
duration of fatigue before a definitive diagnosis can be made (3 months). No
scientific
validation is underpinning yet this proposal. It is generally agreed on that
prognosis in
young persons is much better.
More research is necessary, before conclusions on structure and organisation
of care
for children and adolescents can be made.
6.3 OTHER BELGIAN DATA
As already discussed in the introduction to this chapter, data on Belgian
CFS patients
not diagnosed or treated in the reference centres are difficult to obtain.
Nevertheless,
some additional information could be obtained.
6.3.1 Belgian CFS patients receiving a support under the Disability Scheme
Data were obtained from the Federal Service for Disability Allowances, part
of the
RIZIV/INAMIl.
According to the most recent data available (June, 30th, 2007), 237 999
Belgians were
qualifying for a Disability Allowance. Of these persons, 2 171 persons
(0.9%) were
registered as CFS patients (506 men, 1 665 women). It should be taken into
account
that this is only estimation, and deducted from the Disability appliances,
since no ICD-9-
CM code for CFS exists.
6.3.2 RIZIV/INAMI expenses for the reference centres
On May 20th 2008, the RIZIV/INAMI provided the booked expenses and maximum
budgets foreseen per year (total for all reference centres in Euro). As
shown in Table
12, so far the maximum yearly budget has not been reached yet. Remarkable is
the fact
that the expenses increase especially for the “bilans” (initial
multidisciplinary evaluation).
According to the KCE experts (see colophon) this might be due to the fact
that the
number of referrals increased, especially since 2005-2006. Since waiting
lists were
growing, the Akkoordraad (see Introduction) asked the reference centres to
focus
especially on confirming/rejecting the diagnosis by the initial evaluations.
The reference
centres probably also could yet rely on the network they had built up to
refer patients
back to their home environment for rehabilitation. Also, the experts had the
impression
that more persons were referred not for rehabilitation, but rather for
diagnostic
confirmation to receive reimbursements, to prove their diagnosis in a
lawsuit, etc.
Table 12. RIZIV/INAMI expenses CFS Reference Centres All Centres
2002 2003 2004 2005 2006 2007*
Total Bilan (Euro)
74 204
420 979
404 689
482 245
531 946
576 238*
Total Rehabilitation (Euro)
30 404
496 093
683 962
729 612
650 648
494 710*
Total (Euro)
104 608
917 072
1 088 651
1 211 857
1 182 594
1 070 948*
Maximal Expenses limited to (Euro)
Start Up Start Up Start Up 1 543 367 1 622 250 1 649 858
*preliminary results (May 2008)
6.3.3 Other Belgian data: conclusion
The data taken into account in the RIZIV/INAMI report (2006) largely rely on
data from
the reference centres between 2002 and 2004. Since then, it seems that a
shift towards
a more important diagnostic function is taking place.
-----------------------------------
Footnote from Tom Kindlon:
The summary above says:
"Employment status decreased at the end of the therapy, from an average of
18.3% of a 38h- working week, to 14.9%. However, it should be noticed that
this was not
one of the preset goals of the interdisciplinary treatment, and that no
specific
occupational rehabilitation was foreseen. The percentage of patients living
from a
sickness allowance increased slightly from 54 to 57%."
However the actual report says:
"Conformément à la convention, l’amélioration significative du
fonctionnement socioprofessionnel des patients
est l’un des objectifs de la rééducation. Les données montrent néanmoins que
le pourcentage
moyen d’activités professionnelles rémunérées diminue encore jusqu’à 14,9% à
la fin de la
rééducation. Six pour cents des patients travaillent plus qu’avant la
rééducation, 10% travaillent
moins."
(Quick translation)
"In accordance with the convention, significant improvement in the
socioprofessionnel functioning of the patients is one of the
objectives of the re-education/re-training. Nevertheless the data
shows that the average percentage of paid work decreased further to
just 14.9% at the end of the re-education/re-training.
Six per cent of the patients were working more than before the re-
education/re-training, 10% were working less. For 84% of the
patients the percentage of paid work didn't change."]
e.g. Annex 3:
"Tableau. Efforts de r¨¦insertion professionnelle."
"Things done to try to bring about reintegration into the workforce"
Tables 69-71 has lots of interesting data on the effect on
socioprofessionnel functioning (as I discussed previously:
http://tinyurl.com/225qje i.e.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0702C&L=CO-CURE&P=R4161&I=-3
)
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