ii
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
Published by:
Na onal Inflammatory Arthri s Registry (NIAR)
Clinical Research Centre, 4th floor Specialist office
Selayang Hospital, Selayang-Kepong Highway
68100 Batu Caves, Selangor
Malaysia
Direct line
Fax
Website
: (603) 6120233 ext 9111/4169
: (603) 61202761
: h ps://app.acrm.org.my/NIAR
Disclaimer
: Data reported here are supplied by the NIAR. Interpreta on and
repor ng of these data are the responsibility of the editors and in
no way should be seen as an official policy or interpreta on of the
NIAR. This report is copyright. However it can be freely reproduced
without the permission of the NIAR. However, acknowledgement
would be appreciated.
Suggested cita on : The suggested cita on for this report is as follows:
Dr Azmillah Rosman, Dr Hasselynn Hussein,
Dr Gun Suk Chyn, Dr Lau Ing Soo,
Dr Mollyza Mohd. Zain, Dr Habiba @ Habibah Mohd Yusoof
Dr Asmahan Mohamed Ismail, Dr Liza Mohd.Isa,
Dr Nor Shuhaila Shahril, Dr Ramani Arumugam,
Dr Ong Yew Chong
ISSN No
:
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
CONTENTS
ACKNOWLEDGEMENTS
1
STEERING COMMITTEE MEMBERS
2
MEMBERS OF THE ADVISORY BOARD
2
LIST OF CONTRIBUTORS
3
ABOUT NIAR
Objec ve
Inclusion Criteria
Instrument
Data Flow Process
Progress
5
6
6
6
6
7
1.
DISTRIBUTION OF CASES ACCORDING TO HOSPITAL
9
2.
DEMOGRAPHICS
2.1
GENDER DISTRIBUTION
2.2
AGE DISTRIBUTION
2.3
ETHNIC GROUP
2.4
SOCIOECONOMIC STATUS
2.4.1 PROFESSIONAL VS NON-PROFESSIONAL
2.4.2 INCOME GROUP
2.4.3 PERSONAL MEDICAL INSURANCE
11
12
12
13
14
14
15
15
3.
CHARACTERISTICS OF PATIENTS
3.1
NUMBER OF PATIENTS FULFILLING ACR CRITERIA
3.2
DURATION OF DISEASE BEFORE DIAGNOSIS
3.3
ASSOCIATED MEDICAL PROBLEMS
3.3.1 MEDICAL CO-MORBIDITIES
3.3.2 MALIGNANCIES
3.4
EXTRAARTICULAR MANIFESTATIONS
3.5
DISEASE STATUS AT 1ST NOTIFICATION
17
18
19
20
20
21
21
22
4.
DISEASE BURDEN
4.1
WORK STATUS
4.2
DAYS OF SICK LEAVE TAKEN DUE TO ARTHRITIS IN THE PAST 3
MONTHS
25
26
STANDARD OF CARE
5.1
TIME TO INITIATION OF DMARDS AFTER DIAGNOSIS
5.2
TYPES OF DMARDS USED
27
28
29
5.
26
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PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
5.3
5.4
5.5
5.6
5.7
USE OF COMBINATION DMARDS
USE OF BIOLOGICS
USE OF ORAL STEROIDS
USE OF NSAIDS/COX2 INHIBITORS
SURGERY
29
30
30
30
30
DISCUSSION
31
CONCLUSIONS AND RECOMMENDATIONS
33
REFERENCES
35
APPENDIX I
APPENDIX II
: CASE REPORT FORM
: INFORMATION ON PATIENT CONFIDENTIALITY
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
ACKNOWLEDGMENTS
The Na onal Inflammatory Arthri s Registry would like to express its sincere thanks and
apprecia on to all who have supported and contributed to this report.
We thanks the following for their support:
•
•
•
•
•
•
•
•
•
The Ministry of Health, Malaysia
Y.B. Tan Sri Dato’ Seri Dr Hj Mohd Ismail Merican, Director General of Health,
Malaysia
Dr Lim Teck Onn, Director, Network of Clinical Research Centre
Dr Goh Pik Pin, Co-Director, Network of Clinical Research Centre
Dr Jamaiyah Haniff, Head of Clinical Epidemiology Unit of CRC
Informa on technology personnelnamely MS Lim Jie Ying, database administrator,
Ms Teo Jau Shya, clinical data manager
Members of the “Steering Commi ee” for their contribu ons to the registry
Clinical Research Centre, Ministry of Health, Malaysia
Other sponsors and supporters from the professional bodies, industries and
ins tua ons as listed below:
Ka Consul ng Sdn. Bhd
Schering Plough
Staff from Hospital Selayang, Hospital Tuanku Jaafar, Seremban and
Hospital Putrajaya
1
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PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
STEERING COMMITTEE MEMBERS
Dr Azmillah Rosman (Principal Inves gator)
Department of Medicine, Hospital Selayang
Dr Chow Sook Khuan
Sunway Medical Centre
Dr Amir Azlan Zain
Sunway Medical Centre
Dr Heselynn Hussein
Department of Medicine, Hospital Putrajaya
Dr Gun Suk Chyn
Department of Medicine, Hospital Tuanku Abdul Jaafar, Seremban
Dr Lau Ing Soo
Department of Medicine, Hospital Selayang
Dr Mollyza Mohd Zain
Department of Medicine, Hospital Selayang
MEMBERS OF THE ADVISORY BOARD
Dr Lim Teck Onn (Chairman)
Clinical Research Centre, Ministry of Health Malaysia
Tan Sri Hari Narayanan (Co-chairman)
Arthri s Founda on Malaysia
Ms Ding Mee Hong
Arthri s Founda on Malaysia
Professor Florence Wang
University Malaya Medical Centre
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
LIST OF CONTRIBUTORS
Hospital Selayang
Dr Azmillah Rosman
Dr Lau Ing Soo
Dr Mollyza Mohd Zain
Dr Habibah Mohd Yusoof
Dr Asmahan Mohamed Ismail
Dr Chong Hwee Cheng
Dr Kuan Woon Pang
Dr Ramani Arumugam
Dr Shereen Ch’ng Suyin
Dr Hilmi Abdullah
Dr Ong Yew Chong
Mdm Ramlah Shukor
Mdm Norlela Mohd Salleh
Hospital Tuanku Jaafar, Seremban
Dr Gun Suk Chyn
Dr Beryl D’Sauza
Dr C Gandhi
Dr Lim Ai Lee
Dr Nadia Mohd Noor
Mdm Ho Ah May
Hospital Putrajaya
Dr Heselynn Hussein
Dr Eashwary Mageswaren
Dr Liza Mohd Isa
Dr Nor Shuhaila Shahril
Dr Shamala Rajalingam
Mdm Amnahliza Abu Rahman
3
ABOUT THE NATIONAL
INFLAMMATORY ARTHRITIS
REGISTRY (NIAR)
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
6
ABOUT THE NATIONAL INFLAMMATORY ARTHRITIS REGISTRY (NIAR)
Introduc on
Rheumatoid Arthri s (RA), the most common form of inflammatory arthri s is es mated
to affect about 1% of the popula on. Of unknown ae ology, it typically affects many joints,
causing acute inflamma on, in most cases leading to joint erosions and joint damage (1).
The NIAR, ini ated in 2008, was set up with the aim of obtaining informa on about pa ents
with Rheumatoid Arthri s. Informa on about pa ents with the other inflammatory
arthri des will be collected in the future.
Objec ves
1.
2.
3.
4.
5.
To determine the incidence and prevalence of RA in Malaysia.
To obtain demographic data.
To determine the disease expression in terms of clinical manifesta ons.
To study the management of pa ents.
To assess pa ents’ outcome, studying pa ents’ disease ac vity, extent of disability,
economic impact and mortality rate.
Inclusion Criteria
Patients enrolled into the registry are patients with established Rheumatoid Arthritis,
diagnosed by a rheumatologist.
Instrument
A structured Case Report Form (CRF) [Appendix I] is used for data collection. The CRF
was designed and reviewed by a technical committee. Prior to the launch of the registry,
copies of the CRFs were distributed to doctors from the various hospitals involved. A trial
run was done and feedback given to the committee before the final CRF was used for data
collection. Training sessions were also conducted at the hospitals involved.
Patients’ outcome is assessed three times - at months 0, 6 and 12.
Data Flow Process
The registry is coordinated centrally at the Clinical Research Centre (CRC) based at
Hospital Selayang. Each hospital has an appointed clinic and registry nurse. The database
is available online via password access.
Patients attending their regular clinic appointments were identified. Verbal consent was
obtained from patients using the Patient Confidentiality Information form [Appendix II].
Demographic information was obtained from the patient or carer. Joint count assessments
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
were then performed by the assessing doctor while other information necessary to fill into
the CRF was obtained from patients’ medical records. The registry nurse then entered the
information into the online database. The next outcome date was then determined and this
was coordinated with patients’ scheduled clinic visit.
Patient identified by
Appointed clinic
Nurse / Dr
Nurse / Dr obtains
basic demographic
information
Doctor performs joint
count and fills in
relevant information
manually
Registry nurse
determines next visit
date, informs clinic
nurse
Registry nurse enters
data online
Figure 1: Data Flow Process
Progress
The NIAR was launched officially on 18th December 2008. A er a trial run, the first pa ent
was enrolled into the registry on 21st April 2009. The online database was started on 22nd
May 2009. As of 31st August 2010, 1000 pa ents have been enrolled into the registry.
7
DISTRIBUTION OF CASES
ACCORDING TO HOSPITAL
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
10
1.
DISTRIBUTION OF CASES ACCORDING TO HOSPITAL
Three hospitals were chosen for the pilot project, namely Hospital Selayang, Hospital
Tuanku Jaafar, Seremban and Hospital Putrajaya. These hospitals were selected as
they are the largest rheumatology centres in the MOH. The distribu on of cases are
as follows:
Hospital Putrajaya
202 (20.2%)
Hospital Selayang
434 (43.4%)
Hospital Tuanku
Jaafar, Seremban
364 (36.4%)
N = 1000 pa ents
Figure 2: Distribu on of cases according to hospital
DEMOGRAPHICS
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
12
2.
DEMOGRAPHICS
2.1 GENDER DISTRIBUTION
12.6%
Male
Female
87.4%
Figure 3: Gender distribu on
The gender distribu on showed a female preponderance at 87.4% (n=874)
compared to males 12.6% males (n=126). The male to female ra o was
approximately 7:1.
2.2 AGE DISTRIBUTION
40
37.5
35
30
25
23.3
20
17.2
15
10.3
10
6.9
4.3
5
0.6
0
12 to 20
21 to 30 31 to 40 41 to 50
51 to 60 61 to 70
Figure 4: Age Distribu on
> 71
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
Currently, data has only been collected for adult pa ents with Rheumatoid
Arthri s, defined as those above 12 years old.
The mean age was 52.57 years with the youngest pa ent being 18 years and
the oldest 87 years.
More than half of the pa ents were in the 41-60 age group categories.
2.3 ETHNIC GROUP
The Malays being the largest ethnic group in Malaysia made up 43.2% of the
pa ents in the registry. The Indians who are the smallest of the 3 major ethnic
groups in Malaysia made up 30.4% followed by the Chinese at 24.1%. The other
ethnic groups and foreigners comprised 2.3% of the pa ents.
2.3%
30.4%
Malay
43.2%
Chinese
Indian
Other
24.1%
Figure 5: Distribu on of ethnic groups
Comparing these figures with the 2004 Malaysian Census, the Indians are overrepresented since they cons tute only 7.1% of the Malaysian popula on (2).
The under-representa on of the other ethnic groups in the registry may be
explained by the fact that none of the hospitals in Sabah or Sarawak were
included in this pilot project.
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PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
Malay
Chinese
Indian
Other
Malaysian Census 2004
50.4%
23.7%
7.1%
18.8%
NIAR
43.2%
24.1%
30.4%
2.3%
Table 1: Comparison of ethnic groups with Malaysian Census 2004
2.4 SOCIO-ECONOMIC STATUS
2.4.1 PROFESSIONAL VS NON-PROFESSIONAL
The majority of pa ents were from the lower socio-economic group.
Nearly 90% were non-professionals.
10.2%
Prfessional
Non-professional
89.8%
Figure 6: Distribu on of professional and non-professional groups
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
2.4.2 INCOME GROUP
Monthly Income (RM)
Unknown
9.3
4.1
>7000
5.8
5001-7000
12.8
3001-5000
1001-3000
37.7
30.3
<1000
0
5
10
15
20
25
30
35
40
% of pa ents
Figure 7: Monthly income group
Two-thirds of pa ents had a monthly income of less than RM3000.
2.4.3 PERSONAL MEDICAL INSURANCE
Two-thirds of pa ents did not have any medical insurance.
77.01%
Without
21.72%
With
Unknown
1.27%
Figure 8: Distribu on of pa ents with and without medical insurance
15
CHARACTERISTICS
OF PATIENTS
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
18
3.
CHARACTERISTICS OF PATIENTS
3.1 NUMBER OF PATIENTS FULFILLING AMERICAN COLLEGE OF RHEUMATOLOGY
(ACR) CRITERIA
The tradi onal defini on for Rheumatoid Arthri s has been defined as pa ents
fulfilling 4 or more of the 7 criteria listed in the 1987 ACR criteria (Table 2) (3).
This criteria has been revised in the new ACR-EULAR criteria published in 2010
(4).
Morning s ffness > 1 hour
≥ 3 joints arthri s
Arthri s in a wrist, MCP or PIP joint
Symmetrical arthri s
Factor
Posi ve rheumatoid factor
Erosions or osteopenia on hand or wrist radiograph
* symptoms present for at least 6 weeks
Table 2: 1987 ACR criteria for Rheumatoid Arthri s
The propor on of pa ents fulfilling each criterion is shown in Table 3.
ACR criteria
% of pa ents fulfilling criteria
≥ 3 joints arthri s
94.4
Symmetrical arthri s
92.8
Arthri s in a wrist, MCP or PIP joint
70.5
Morning s ffness > 1 hour
70.5
Posi ve rheumatoid factor
68.5
Erosions or osteopaenia on hand or
wrist radiograph
41.0
Rheumatoid factor
6.1
Table 3: Percentage of pa ents fulfilling each ACR criteria
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
The percentage of pa ents fulfilling the 1987 ACR criteria is shown in Figure
9. 78.3% fulfill the ACR criteria defini on for Rheumatoid Arthri s however a
significant propor on fulfill less than 4 of the criteria.
≥4
34
35
≥4
30
21.7%
25
22.5
20
20
78.3%
% of pa ents
15
10
5
0
1.8
4
5
6
7
Number of ACR
Criteria fulfilled
Figure 9: Percentage of pa ents fulfilling ACR criteria
3.2 DURATION OF DISEASE BEFORE DIAGNOSIS
Almost half of the pa ents were diagnosed late, that is more than a year a er
the onset of symptoms. However, a significant propor on of pa ents were
diagnosed between 1 to 6 months from symptom onset.
48.7
50
40
37.3
30
20
14
10
0
< 6 months
< 6 months
< 12 months
Number of months from symptom onset to diagnosis
Figure 10: Distribu on of pa ents according to dura on of disease
before diagnosis
19
20
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
Comparing professionals and non-professionals, it would appear that more
professionals are diagnosed earlier, that is less than 6 months from disease
onset. However, even amongst the professionals, about 40% were diagnosed
more than a year from the onset of symptoms.
120
100
80
60
N=102
40.2
0
49.67
13.81
44.11
Professional
> 12 months
6 to 12 months
15.59
40
20
N=898
< 6 months
36.52
Non-Professional
Figure 11: Dura on of disease before diagnosis comparing
professionals and non-professionals
3.3 ASSOCIATED MEDICAL PROBLEMS
3.3.1 MEDICAL CO-MORBIDITIES
Among the medical condi ons, hypertension was the commonest comorbidity with a prevalence of 36.2%. This is slightly lower than the
na onal prevalence of 42.6% of hypertension in adults above 30 years
of age (5). Next was hyperlipidaemia at 25.5% followed by diabetes at
16.1%. The Na onal Health and Morbidity Survey in 2006 found that the
prevalence of diabetes is 12% (6). 6.1% of pa ents had been diagnosed
to have osteoporosis. Pep c ulcer disease and ischaemic heart disease
were each reported in 3.9% of the pa ents.
The other medical condi ons with the reported figures are listed in
Table 4.
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
IHD
3.9
PUD
3.9
6.7
Osteoporosis
16.1
DM
Hyperlipidaemia
25.5
36.2
Hypertension
0
5
10
15
20
25
30
35
40
Figure 12: Associated co-morbidi es
Disease
Fa y liver
Tuberculosis
Hepa s B
Stroke
Renal impairment
Hepa s C
Others
% of paƟents
2.3%
1.2%
1.0%
0.6%
0.5%
0.2%
20.4%
Table 4: Associated co-morbidi es
3.3.2 MALIGNANCIES
16 cases of malignancies were reported. The highest malignancy
reported was breast cancer. The other malignancies to find out what
the other malignancies are 4 other malignancies includes - kidney,
brain, thyroid & colon cancer
3.4 EXTRAARTICULAR MANIFESTATIONS
There are a number of extraar cular manifesta ons associated with Rheumatoid
Arthri s. The commonest one seen in this pa ent cohort was keratoconjunc vi s
sicca followed by lung fibrosis and anaemia due to rheumatoid arthri s. 35
21
22
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
pa ents had rheumatoid nodules. The percentages of pa ents with each
extraar cular manifesta ons are listed below.
ManifestaƟon
Numbers
Percentage %
226
22.6
61
6.1
Anaemia (due to RA disease ac vity)
37
3.7
Rheumatoid nodules
61
6.1
Eye inflamma on
8
0.8
Fever
5
0.5
Raynaud’s
4
0.4
Entrapment neuropathy
4
0.4
Atlanto-axial subluxa on
4
0.4
Cutaneous vasculi s
3
0.3
Mononeuropathy
2
0.2
Polyneuropathy
1
0.1
Felty’s syndrome
1
0.1
Cervical myelopathy
1
0.1
Pleural effusion
0
0
Pericardi s/effusion
0
0
Amyloidosis
0
0
Lymphadenopathy
0
0
Others
9
0.9
Keratoconjunc vi s sicca
Inters
al lung disease
Table 5: Extraar cular manifesta ons
3.5 DISEASE STATUS AT 1ST NOTIFICATION
The DAS28 score is used to assess pa ent’s disease ac vity. The DAS28 score
is calculated based on the number of swollen and tender joints (only 28 joints
are assessed), general health assessment using a pa ent visual analogue scale
and either ESR or CRP. Pa ents are then categorized into either having low
(DAS28 2.6 to 3.2), moderate (DAS28 >3.2 to 5.1) or high (DAS28 >5.1) disease
ac vity states or in remission (DAS29 <2.6). Those whose DAS28 scores cannot
be obtained for various reasons were classified as unknown. Nearly half of the
pa ents in this cohort were in the moderate and high disease categories.
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
35
31.5
30
25
22.1
20
15
16.5
16
13.9
10
5
0
Remission
Unknown
Disease ac vity based on
DAS28 ESR/CRP score
Figure 13: Disease status at 1st no fica on
23
DISEASE BURDEN
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
26
4.
DISEASE BURDEN
4.1 WORK STATUS
Full me
2%
Re red
32%
Part- me
8% unempliyed
26%
Home-maker
32%
51.8%
due to disease
Unemployed due to disease
Unemployed due to family
Unemployed others
Figure 14: Work status and reasons for unemployment
8% of pa ents were unemployed but significantly, nearly 52% of those
who were unemployed a ributed this to their disease. 32% of pa ents
were home-makers.
4.2 DAYS OF SICK LEAVE TAKEN DUE TO ARTHRITIS IN THE PAST 3 MONTHS
% of pa ents
10
8.1
8
6
4
2
0.3
0
1 to 14
15 to 30
0
31 to 45
0.1
46 to 60
0
61 to 75
0
76 to 90
Number of days
Figure 15: Days of sick leave taken due to arthri s in the past 3 months
Out of the 338 pa ents who were employed, 81 pa ents took between 1 to 14
days of sick leave due to arthri s. 3 pa ents took between 15 to 30 days of sick
leave and 1 pa ent took sick between 46 to 60 days. None took more than 60
days of sick leave.
STANDARD OF CARE
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
28
5.
STANDARD OF CARE
5.1 TIME TO INITIATION OF DMARDS AFTER DIAGNOSIS
A large propor on of pa ents were started on Disease Modifying An -Rheuma c
Drugs (DMARDS) soon a er the diagnosis was made. This is in accordance with
current treatment recommenda ons.
80
69.7
60
40
11.6
20
11.6
3.3
11.6
0
< 1months
1-6 months
6-12 months
>12 months
Unknown
Figure 16: Time to ini a on of DMARDS a er diagnosis
Comparing professionals and non-professionals, there does not appear to be
much difference in terms of when treatment was started.
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
5
5
15
12.88
3.25
11.72
> 12 months
6-12 months
75
72.12
Professional
N=100
Non-Professional
N=862
1-6 months
< 1 months
Figure 17: Time to ini a on of DMARDS a er diagnosis comparing
professionals and non-professionals
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
5.2 TYPES OF DMARDS USED
Methotrexate (MTX) being the anchor drug in the treatment of Rheumatoid
Arthri s was used in 86.6% of pa ents. This was followed by sulphasalazine
(SSZ) at 69.5% and hydroxychloroquine (HCQ) at 34.6%. The use of Leflunomide
was 24.1%. The other less commonly used drugs for example cyclosporine,
penicillamine, azathioprine and cyclophosphamide were used in 2.7% of the
pa ents.
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
86.6
69.5
34.6
24.1
2.7
MTX
SSZ
HCQ
Others
Figure 18: Types of DMARDS used
5.3 USE OF COMBINATION DMARDS
697 of pa ents were on combina on DMARDS. The distribu on of pa ents
using the various combina on DMARDS are shown in the figure below.
20.44%
MTX + SSZ
35.45%
24.6%
MTX + Leflunomide
MTX + SSZ + HCQ
Figure 19: Combina on DMARDS used
29
30
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National Inflammatory Arthritis Registry (NIAR)
5.4
USE OF BIOLOGICS
The use of the TNF inhibitors comprising Infliximab, Etanercept and Adalimumab
was 3.9% in this pa ent cohort.
5.5 USE OF ORAL STEROIDS
Short courses of oral steroids is some mes used as bridging therapy. The use of
steroids in this pa ent popula on was 38.2%.
5.6 USE OF NSAIDS/COX2 INHIBITORS
Non steroidal an -inflammatory drugs (NSAIDS) is used as analgesic therapy.
If NSAIDS are contraindicated, pa ents can be prescribed cyclo-oxygenase 2
inhibitors (COX2 INHIBITORS). About 62% of pa ents had been on NSAIDS/
COX2 INHIBITORS.
5.7 SURGERY
4% of pa ents have undergone arthroplasty. Surgical interven ons such as
arthrodesis, spinal surgery and synovectomy are not commonly performed.
Surgeries not directly related to rheumatoid arthri s for example appendicectomy
or caesearean sec ons are categorized into other.
23.3
25
20
15
10
4
5
0.4
0.4
0.8
0
Arthroplasty
Arthrodesis
Spinal
surgery
Synovectomy
Figure 20: Surgical interven ons
Other
DISCUSSION
32
PRELIMINARY REPORT: APRIL 2009 - AUGUST 2010
National Inflammatory Arthritis Registry (NIAR)
DISCUSSION
This is a pilot project involving only three hospitals from the Ministry of Health. In order
to be er reflect the demographics, characteris cs, standard of care and pa ent outcomes
in the general popula on, there is a need to recruit pa ents from more centres including
those from private and university hospitals.
There is over-representa on of Indians in this registry perhaps due to sampling bias
because of the areas covered by the three hospitals. Not surprisingly, many of the pa ents
are non-professionals and from the lower socio-economic group since the three hospitals
are public hospitals. These pa ents do not have medical insurance cover and need financial
aid from the government.
A significant propor on of pa ents do not fulfill the ACR criteria for rheumatoid arthri s.
This confirms the fact that the criteria should not be used as the sole criterion for diagnosis
since many pa ents do not fulfill the criteria at disease onset especially those who present
early in the course of the disease.
Alarmingly, many pa ents are s ll diagnosed late. This may result in increased disease
burden. Nevertheless, the results from the registry show that there are a significant
propor on who are diagnosed less than six months from disease onset. It may be that
pa ents who were diagnosed late were those who were diagnosed in the earlier years
whereas there may be a trend now towards earlier diagnosis. However, this would require
further study.
A significant number of pa ents have medical co-morbidi es. The prevalence of the
various diseases in this pa ent cohort are similar to the prevalence rates of the Malaysian
adult popula on. Pa ents with rheumatoid arthri s are at risk of osteoporosis due to the
disease itself as well as due to steroid use. The prevalence of osteoporosis in this cohort was
reported as 6.7%. This is markedly below the reported prevalence of 22% (7). This might
be due to under-repor ng or that pa ents have been not adequately screened. Pa ents
with rheumatoid arthri s are also at increased risk of malignancies. Of the malignancies,
the incidence of lymphoma has been reported to be two-fold higher than expected (8).
However, there were no cases of lymphoma in this pa ent cohort.
In terms of pa ent outcome, many pa ents are s ll in the moderate to high disease ac vity
categories. The reasons for this need to be ascertained. It may be that more aggressive
treatment strategies need to be ins tuted. The cost-effec veness of biologics also need to
be determined in rela on to this.
Among the unemployed pa ents, more than half of the pa ents claim that this is due to
their disease. Of note, 32% of pa ents are home-makers. It would be interes ng to find
out whether the decision to be a home-maker was influenced by their disease.
The majority of pa ents were started on treatment soon a er the diagnosis was made.
This is in accordance with current treatment guidelines (9).
CONCLUSIONS AND
RECOMMENDATIONS
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CONCLUSIONS AND RECOMMENDATIONS
Thus far, several interes ng results have been obtained from the registry. The data confirm
that rheumatoid arthri s has significant socio-economic impact to the society. Therefore,
policies need to be implemented to reduce the financial burden to pa ents and to society
as a whole. There is also a need to raise awareness among the general public regarding
the disease and primary care physicians need to refer early so that pa ents can be treated
appropriately. Clinicians also need to be aware that pa ents with rheumatoid arthri s
have co-morbidi es and need to be treated holis cally.
The NIAR data offers much poten al for research and hopefully, this will serve as an
impetus for research and the implementa on of policies for the benefit of pa ents.
REFERENCES
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REFERENCES
(1) Kasper D. Braunwald E. et al. Harrisons’s Principles of Internal Medicine, 17th edi on.
Chapter 14: Sec on 2.
(2) Malaysian census 2004
(3) Arne FC, Edworthy SM et al. The American Rheuma sm Associa on 1987
revised criteria for the classifica on of rheumatoid arthri s. Arthri s Rheum. 1988
Mar;31(3):315-24
(4) Aletaha D, Neogi T et al. 2010 Rheumatoid arthri s classifica on criteria: an American
College of Rheumatology/European League Against Rheuma sm collabora ve
ini a ve. Ann Rheum Dis 2010;69:1580-1588.
(5) The Third Na onal Health Morbidity Survey (NHMS III). Diabetes Group. Ministry of
Health Malaysia, 2006.
(6) The Third Na onal Health Morbidity Survey (NHMS III). Hypertension Group. Ministry
of Health Malaysia, 2006.
(7) Haugeberg G et al. Clinical decision rules in rheumatoid arthri s: do they iden fy
pa ents at high risk for osteoporosis? Tes ng clinical criteria in a popula on based
cohort of pa ents with rheumatoid arthri s recruited from the Oslo Rheumatoid
Arthri s Register. Ann Rheum Dis 2002 Dec;61(12):1085-9)
(8) Franklin J, Lunt M et al. Incidence of lymphoma in a large primary care derived cohort
of cases of inflammatory polyarthri s. Ann Rheum Dis. 2006 May;65(5):617-22.
(9) Saag KG, Teng GG, Patkar NM et al. American College of Rheumatology 2008
recommenda ons for the use of nonbiologic and biologic disease-modifiying
an rheuma c drugs in rheumatoid arthri s. Arthri s Rheum 2008;59:762.
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