clinical research
http://www.kidney-international.org © 2015 International Society of Nephrology
Renal registry in Hong Kong—the first 20 years Chi Bon Leung1, Wai Lun Cheung2 and Philip Kam Tao Li1 1
Department of Medicine and Therapeutics, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong and 2Cluster Services Division, Hospital Authority, Hong Kong
Renal Registry was started by the Hospital Authority (HA) in Hong Kong in 1995. It is an online system developed by HA. It collects all patients under care in HA, which is about 90–95 % of all requiring renal replacement therapy (RRT) in Hong Kong. The total number of patients treated increased from 3312 in 1996 to 8510 in 2013. In 2013, there were 3501 renal transplant, 1192 hemodialysis (HD) and 3817 peritoneal dialysis (PD) patients. In 2013, 1147 new patients joined the RRT program, 49.6% of them suffered from diabetic nephropathy. Glomerulonephritis and hypertension are the 2nd and 3rd most common causes of RRT in Hong Kong. The median age was 59.1 years with male to female ratio of 1.54 to 1. Hong Kong practices ‘PD first’ policy and the majority of the patients are on CAPD treatment. The ratio of PD to HD was 76.2% to 23.8%. Eighty-six percent of all PD patients are on CAPD; the remaining 14% are on automated peritoneal dialysis (APD). Sixty-five percent of all dialysis patients are on erythropoiesis-stimulating agent treatment. The Hong Kong Renal Registry with online real-time data input and access can provide timely data and information to facilitate patient care and management and also provides invaluable data to help in development and planning of renal services in Hong Kong. Kidney International Supplements (2015) 5, 33–38; doi:10.1038/kisup.2015.7 KEYWORDS: hemodialysis; Hong Kong hospital authority; peritoneal dialysis; renal registry; renal replacement therapy; renal transplant
Correspondence: Professor Philip Kam Tao Li, Department of Medicine and Therapeutics, Prince of Wales Hospital, The Chinese University of Hong Kong, 30–32 Ngan Shing Street, Shatin, Hong Kong. E-mail: [email protected] Kidney International Supplements (2015) 5, 33–38
RENAL SERVICES IN HONG KONG
Hospital Authority (HA) provides the renal replacement therapy (RRT) and care of over 90% of end-stage renal failure in Hong Kong. There are 15 renal units under seven HA clusters in providing RRT. There are four renal transplant centres in Hong Kong (HK)—Princess Margaret Hospital, Prince of Wales Hospital, Queen Elizabeth Hospital, and Queen Mary Hospital. HONG KONG RENAL REGISTRY SYSTEM
The Renal Registry is a direct, online, computerized registry system developed by the Central Renal Committee, Hospital Authority (HA), to capture data of all public RRT patients in Hong Kong under HA. It was first implemented in 1995 with special renal registry terminals in Renal Units for data entry and retrieval, connecting through WLAN, to a central server. It is a self-developed program and database and data are entered directly online by all renal units. Currently, all eligible users (renal unit staff) can access the Renal Registry System not only from designated Renal Registry Terminals, but all Clinical Management System Terminals, which is linked to the same information superhighway (WLAN) using a preset link to call up the function from the HAHO designated server. Each individual renal unit can access their own patient data online, as to facilitate both individual patient management and provide important and valuable data for the unit as a whole. HA Head Office can produce up-to-date registry data for the whole HA; the data are important for audit, monitoring and planning of future services. Renal Registry is part of the Organ Registry and Transplant System, which has a component of other organ registries, Organ Procurement System and Transplant and Immunogenetics System. Organ Procurement System is used by the transplant coordinators for cadaveric donors. Potential donor demographics, clinical conditions, immunological and virology results are stored. Transplant and Immunogenetics System is used by the designated Transplant and Immunogenetics laboratory to centralize the transplantation immunogenetics and tissue typing services. An important function of the Renal Registry is to serve the central Cadaveric Kidney Allocation. A scoring system based on the years on RRT, the HLA matching and the age of patients is developed to determine the priority of the potential recipient list. The donor clinical information including virology results can be obtained directly online. The direct communication, data exchanges and downloading 33
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CB Leung et al.: Renal registry in Hong Kong
among the different systems avoids unnecessary data transcription and hence minimize the error. Currently, there is a Renal Registry Steering Group and an Implementation Team formed under Central Renal Committee, HA to look after the direction and development together with the daily running and wellbeing of the system and data, respectively. MILESTONES OF RRT IN HONG KONG
The first acute hemodialysis (HD) was started in Hong Kong in 1962 (Figure 1). This was followed by chronic maintenance HD. The first cadaveric kidney transplant was performed in 1969 and the first living-related renal transplant in 1980. In 1980s, continuous ambulatory peritoneal dialysis (CAPD) was introduced. In 1985, the PD-first policy was adopted in HA. Automated PD was started in 1989. Despite the PD-first policy, there was also gradually a growing need for HD support for those PD patients who needed to switch because of complications and inadequate dialysis of PD. Nocturnal home HD was introduced in 2006, and a public–private partnership HD program was introduced since 2010. The data collected through RR have an important part in planning of renal services of Hong Kong. INCIDENCE AND PREVALENCE
In 1996, the number of incident patients was 615. In 2013, the number was steadily increased to 1147, making the incidence rate to 159 per million population (Figure 2). In 1996, there were 3312 patient on RRT (956 transplant, 491 HD, and 1865 PD). The number increased steadily and by 2013, there were 8510 RRT patients (3501 transplant, 1192 HD, and 3817 PD) (Figure 3). DEMOGRAPHIC DATA
For the year ending 31 December 2013, the median age of prevalent patients receiving RRT was 51.4 years, 44.6% of them were over 60 years and 18% were over 70 years. For new patients entering into RRT program in 2013, the median age was 59.1 years, 47.6% were over 60 and 22.1% were over 70 years. The trend of increasing number of elderlies in and entering into the RRT program was observed. Figure 4 shows
Chronic HD Cadaveric renal transplant
PD-first policy
HD Publicprivate partnership
APD
1962 1969 1980 1985 1987 1989 2006 2010 Acute HD
Living-related renal transplant
Living-unrelated renal transplant
Nocturnal home HD
CAPD
Figure 1 | Milestones of renal replacement therapy in Hong Kong. APD, automated peritoneal dialysis; CAPD, continuous ambulatory peritoneal dialysis; HD, hemodialysis; PD, peritoneal dialysis. 34
the rising age of incident patients put on PD with a significant rising trend in the age groups of 45–64 years and older than 75 years. GENDER
The male to female ratio of prevalent patients showed a gradual increase from 1.09 in 1996 to 1.29 in 2013. The incident patient also showed a similar trend from 1.28 in 1996 with further increase in male preponderance to 1.54 in 2013. PRIMARY RENAL DISEASE
Twenty-nine percent of new patients entering RRT in 1995 was due to glomerulonephritis, which showed a steady decrease to 17% in 2013. However, that from diabetes mellitus increased from 26.2% in 1996 to 49.6% in 2013. Figure 5 shows the trend of absolute number of the causes of new cases of RRT from the year 1996 to 2013. RENAL REPLACEMENT THERAPY
Of the 1147 new patients in 2013, 953 are on PD, 159 on HD, and 158 on renal transplant. More than 86% of new patients requiring dialysis are put on PD. In 2013, there were 1991 renal failure patients waiting for a kidney transplant. That year, 69 Cadaveric and 12 living-related transplantations were performed in HK, whereas 77 were performed outside HK. Thirty-five renal transplants were performed without any prior dialysis therapy (3%). In 2013, 3817 of prevalent patients were on PD, 1192 HD, and 3501 had transplant. The ratio of PD:HD was 76.2:23.8. Eighty-six percent of PD patients are on CAPD and the remaining 14% are on APD. There was a gradual trend of increasing use of APD (Figure 6). In all, 90.5% of HD is provided by in-patient centres. The prevalent kidney transplant patients showed a steady rise from 1996 till 2013 with increase mainly in the area of deceased donor renal transplantation (DDRT), whereas live donor renal transplantation patient numbers were relatively stable for the past 10 years (Figure 7). ERYTHROPOIESIS-STIMULATING AGENTS
In 2013, there were 65% of all RRT patients receiving erythropoiesis-stimulating agents (Figure 8). It was 29.3% in 1996. This was as a result of a significant increase of funding from the Government in the recent years to enhance the treatment of renal anemia in our RRT patients. DISCUSSION
The number of patients suffering from chronic kidney disease (CKD) is ever increasing. Early detection and management of renal disease is important to reduce the burden of end-stage renal failure requiring RRT. HA started the development of renal registry to help centres in collecting data systematically through daily patient management. The system was custom built for and by the clinicians with good input of data. Hong Kong, like many parts of the world, is seeing a gradual but significant increase in prevalent cases on RRT The Kidney International Supplements (2015) 5, 33–38
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CB Leung et al.: Renal registry in Hong Kong
Incident counts of different modalities of RRT, 1996–2013 1400 1200 All 1000 PD 800 600 400 HD
200
RTx 0
1996
1997
1998
1999
2000 2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
2013
All
615
700
785
815
873
934
925
923
956
995
1032
1025
1036
930
1037
1115
1181
1147
PD
526
597
700
719
781
787
742
748
746
810
803
822
827
752
815
888
913
953
HD
60
70
41
47
39
60
76
74
86
79
116
133
129
103
143
164
225
159
RTx
29
33
44
49
53
87
107
101
124
106
113
70
80
75
79
63
43
35
Figure 2 | Incident cases of renal replacement therapy (RRT) in Hong Kong, 1996–2013. HD, hemodialysis; PD, peritoneal dialysis; RTx, renal transplant.
9000 8000 7000
PD
HD
RTx
3817 3692
6000 3462 3328
5000
3401
3437
3547
3406
3279 3161 3054 2961
4000
2850 2705 2555
3000
2338 2069
2000 1000
552
1865
396 955
560
584
600
640
677
727
773
870
967
1066 1192
543 517
3501 3233 3319 3354 3442 2834 2922 3094 2461 2652 2254 1794 2047 1360 1553 1087 1201 423
473
483
2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 3 | Prevalent cases of renal replacement therapy in Hong Kong, 1996–2013. HD, hemodialysis; PD, peritoneal dialysis; RTx, renal transplant.
median age of prevalent patient on RRT is also shown to be increasing, and the biggest increase is seen in the age groups of 45–64 and over 75 years. RRT poses a heavy financial burden on the health-care systems around the world. The PD-first policy of Hong Kong was proven to be successful. It has been shown that no significant difference was found between PD and HD in patient survival around the world and it in fact may favor a slightly lower mortality in PD.1 In Hong Kong, strategies to improve the longevity of PD had been adopted including the introduction of automated PD usage since 1997 (the number of patient using APD is more than 500 (13.9% of all PD treatment) in 2013), early use of Icodextrin for patient with ultrafiltration failure, and poor DM control. Overall, cost for home therapies and in Kidney International Supplements (2015) 5, 33–38
particular home PD is less expensive than in centre dialysis programs around the world.2 As a consequence, the percentage of PD to HD in Hong Kong was as high as 82% in 2008. At the same time, we do see the need for some of the PD patients who may benefit from a timely switch to HD. Various strategies such as expanding incentre HD service in HA, developing public–private partnership HD centres, and promoting home HD were started. The latest PD to HD percentage distribution has decreased to 76.2% and 23.8%, respectively, in 2013. Palliative care as an option for some CKD stage-5 patients is developed through good individualized therapy and treatment plan. Erythropoiesis-stimulating agents were introduced for renal anemia, starting with self-payment in 1980s, then 35
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Incident counts of ESRD on PD—age stratified, 1996–2013 600
500 45–64 400
300
200
65–74 75+
100
20–44 0–19 2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 4 | Age trends of incident peritoneal dialysis (PD) population from 1996 to 2013. ESRD, end stage renal disease.
Trends in incident counts—by diagnosis, 1996–2013 600 550
Diabetes
500 450 400 350 300 250
Glomerulonephritis
200 150
Unknown causes
100
Hypertension Cystic kidney & other Other causes hereditary
50
2013
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
2012
Other urologic
0
Figure 5 | Causes of incident new cases on renal replacement therapy, 1996–2013.
subsidized programs, and finally through hospital provision. Patient general health and wellbeing were improved. The incidence of frequent blood transfusion with consequent side effects of iron overload was reduced. The incidence of hepatitis B and hepatitis C in dialysis population is also noted to be decreased.3 Transplantation is the best available RRT for those suitable patients.4 Owing to the shortage of organ availability, in 2013, there were only 69 cadaveric renal transplants and 12 live donor renal transplantations done in HK. The burden of increase demand on RRT from CKD affects Hong Kong as much as the global burden. This can only be improved with early detection of the CKDs by nephrologists 36
with the help from family physicians, general physicians and other health-care professionals, and patients themselves,5 and also prevention of patients from suffering of acute kidney injury.6 There is a plan to automatic integration of information available in the HA Clinical Management System including the laboratory, pharmacy data into the system to avoid unnecessary transcription, and to facilitate the individual units to have their own data analysis and audit. The data generated can be used to benchmark with Internatioal figures. The Hong Kong renal registry data were incorporated into United States Renal Data System (USRDS) annual report since 2000. This can help to improve the service Kidney International Supplements (2015) 5, 33–38
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CB Leung et al.: Renal registry in Hong Kong
% APD among chronic PD patient 13.89%
14.00% 12.24%
12.00% 10.04%
10.00% 8.06% 8.23%
8.00% 6.47% 5.52%
6.00%
4.98% 4.76%
4.89%
4.00%
4.90% 4.19% 4.37% 4.33%
4.36%
4.19% 3.14%
2.00% 0.00%
2013
2012
2011
2010
2008
2009
2007
2006
2005
2004
2003
2002
2001
2000
1999
1997
1998
1996
0.00%
Figure 6 | Rising trend of utilization of automated peritoneal dialysis (APD). PD, peritoneal dialysis. Prevalence of LDRT/DDRT, 1996–2013 as of 31/12 each year 3200
3083
3054
2800
2805
2400
2950
2681
All LDRT Number of patients
2896
2514
2433
All DDRT
2260 2070
2000 1864 1656
1600 1411
1200
1175 1003 858
800
774 659
400
358
344
314
297
379
392
384
391
402
393
392
409
429
414
424
428
415
408
2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 7 | Number of kidney transplant patients in Hong Kong, 1996–2013. DDRT, deceased donor renal transplantation; LDRT, live donor renal transplantation. 70%
34573500
65%
3228
Percentage of patients on ESA
65.00%
63.60%
3000
Number of patients on ESA
60%
2686
2500
55.70%
55% 2108
50%
1950 1682
45%
1517
993
30%
46.50% 46.50% 44.70%
1500
1234 1285
40% 35%
2000
2020
983
1030
39.60%
1104 1117 1127
1000
36.90%
860
34.10% 33.20% 32.00%32.20% 31.30% 31.00%31.50%30.70% 30.30% 29.30%
690
500
25% 2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 8 | Number and percentage of prevalent dialysis patients on erythropoiesis-stimulating agents (ESAs), 1996–2013. Kidney International Supplements (2015) 5, 33–38
37
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in Hong Kong by a comparison with the rest of the world and also contribute toward a better understanding of epidemiology of renal failure among various ethnic groups and socioeconomic status. CONCLUSIONS
Renal Registry in Hong Kong is a computerized system that uses online real-time data input and access to provide timely data and information to facilitate patient care and management. It also provides invaluable data to help in development and planning of service and for projection of demand of renal services. The success of a registry requires the engagement of front-line staff in timely and accurate entry of the information, which in turn helps their own clinical work and management.
CB Leung et al.: Renal registry in Hong Kong
transplant coordinators and all the staffs of Transplant and Immunogenetics Laboratory. We also thank the members of the Renal Registry Steering Group of the Central Renal Committee, Hospital Authority: Philip Li (Chairman), Andrew Wong, KF Chau, WK Lo, Alexander Chiu, Frank Chan, CB Leung, Joanna Pang, Johnny Lam, and members of the Renal Registry Implementation Team: CB Leung (Chairman), Stanley Lo, Maggie Ma, S Yeung, CH Tam, SK Yuen, PN Wong, Samuel Fung, WM Lai, SF Cheung, YL Cheng, Bonnie Kwan, HM Cheng, Anthony KC Hau, John YH Chan, Irene Kong, MC Law, Johnny Lam and Nicholas Yeung, Joanna Pang, Frank Chan, and YW Ho. This supplement was supported by a grant from the 59th Annual Meeting of the JSDT. REFERENCES 1. 2.
DISCLOSURE
The authors declared no competing interests.
3.
ACKNOWLEDGMENTS
We thank all the medical and nursing staff of Alice Ho Miu Ling Nethersole Hospital, Caritus Medical Centre, Kwong Wah Hospital, North District Hospital, Pamela Youde Nethersole Eastern Hospital, Prince of Wales Hospital, Princess Margaret Hospital, Queen Elizabeth Hospital, Queen Mary Hospital, Tseung Kwan O Hospital, Tuen Mun Hospital, Tung Wah Hospital, United Christian Hospital, Yan Chai Hospital, and Yaumatei Specialist Clinic for contribution toward entering the renal patient data. We thank the support of all the
38
4.
5.
6.
Li PKT, Chow KM. Peritoneal dialysis first policy made successful: perspectives and actions. Am J Kidney Dis 2013; 62: 993–1005. Li PKT, Cheung WL, Lui SL et al. Increasing home based dialysis therapies to tackle dialysis burden around the world: a position statement on dialysis economics from the 2nd Congress of the International Society for Hemodialysis. Nephrology (Carlton) 2011; 1: 53–56. Leung CB, Ho YW, Chau KF et al. Renal replacement therapy for chronic hepatitis B carrier: a subgroup analysis from the Hong Kong Renal Registry 1995–1999. Hong Kong J Nephrol 2000; 2: 104–109. Li PKT, Chu KH, Chow KM et al. A cross sectional survey on the concerns and anxiety of patients waiting for organ transplants. Nephrology 2012; 17: 514–518. Li PKT, Chow KM, Matsuo S et al. Asian chronic kidney disease best practice recommendations—positional statements for early detection of chronic kidney disease from Asian Forum for Chronic Kidney Disease Initiatives (AFCKDI). Nephrology (Carlton) 2011; 16: 633–641. Li PKT, Burdmann EA, Mehta RL. Acute kidney injury: global health alert. Kidney Int 2013; 83: 372–376.
Kidney International Supplements (2015) 5, 33–38
http://www.kidney-international.org © 2015 International Society of Nephrology
Renal registry in Hong Kong—the first 20 years Chi Bon Leung1, Wai Lun Cheung2 and Philip Kam Tao Li1 1
Department of Medicine and Therapeutics, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong and 2Cluster Services Division, Hospital Authority, Hong Kong
Renal Registry was started by the Hospital Authority (HA) in Hong Kong in 1995. It is an online system developed by HA. It collects all patients under care in HA, which is about 90–95 % of all requiring renal replacement therapy (RRT) in Hong Kong. The total number of patients treated increased from 3312 in 1996 to 8510 in 2013. In 2013, there were 3501 renal transplant, 1192 hemodialysis (HD) and 3817 peritoneal dialysis (PD) patients. In 2013, 1147 new patients joined the RRT program, 49.6% of them suffered from diabetic nephropathy. Glomerulonephritis and hypertension are the 2nd and 3rd most common causes of RRT in Hong Kong. The median age was 59.1 years with male to female ratio of 1.54 to 1. Hong Kong practices ‘PD first’ policy and the majority of the patients are on CAPD treatment. The ratio of PD to HD was 76.2% to 23.8%. Eighty-six percent of all PD patients are on CAPD; the remaining 14% are on automated peritoneal dialysis (APD). Sixty-five percent of all dialysis patients are on erythropoiesis-stimulating agent treatment. The Hong Kong Renal Registry with online real-time data input and access can provide timely data and information to facilitate patient care and management and also provides invaluable data to help in development and planning of renal services in Hong Kong. Kidney International Supplements (2015) 5, 33–38; doi:10.1038/kisup.2015.7 KEYWORDS: hemodialysis; Hong Kong hospital authority; peritoneal dialysis; renal registry; renal replacement therapy; renal transplant
Correspondence: Professor Philip Kam Tao Li, Department of Medicine and Therapeutics, Prince of Wales Hospital, The Chinese University of Hong Kong, 30–32 Ngan Shing Street, Shatin, Hong Kong. E-mail: [email protected] Kidney International Supplements (2015) 5, 33–38
RENAL SERVICES IN HONG KONG
Hospital Authority (HA) provides the renal replacement therapy (RRT) and care of over 90% of end-stage renal failure in Hong Kong. There are 15 renal units under seven HA clusters in providing RRT. There are four renal transplant centres in Hong Kong (HK)—Princess Margaret Hospital, Prince of Wales Hospital, Queen Elizabeth Hospital, and Queen Mary Hospital. HONG KONG RENAL REGISTRY SYSTEM
The Renal Registry is a direct, online, computerized registry system developed by the Central Renal Committee, Hospital Authority (HA), to capture data of all public RRT patients in Hong Kong under HA. It was first implemented in 1995 with special renal registry terminals in Renal Units for data entry and retrieval, connecting through WLAN, to a central server. It is a self-developed program and database and data are entered directly online by all renal units. Currently, all eligible users (renal unit staff) can access the Renal Registry System not only from designated Renal Registry Terminals, but all Clinical Management System Terminals, which is linked to the same information superhighway (WLAN) using a preset link to call up the function from the HAHO designated server. Each individual renal unit can access their own patient data online, as to facilitate both individual patient management and provide important and valuable data for the unit as a whole. HA Head Office can produce up-to-date registry data for the whole HA; the data are important for audit, monitoring and planning of future services. Renal Registry is part of the Organ Registry and Transplant System, which has a component of other organ registries, Organ Procurement System and Transplant and Immunogenetics System. Organ Procurement System is used by the transplant coordinators for cadaveric donors. Potential donor demographics, clinical conditions, immunological and virology results are stored. Transplant and Immunogenetics System is used by the designated Transplant and Immunogenetics laboratory to centralize the transplantation immunogenetics and tissue typing services. An important function of the Renal Registry is to serve the central Cadaveric Kidney Allocation. A scoring system based on the years on RRT, the HLA matching and the age of patients is developed to determine the priority of the potential recipient list. The donor clinical information including virology results can be obtained directly online. The direct communication, data exchanges and downloading 33
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CB Leung et al.: Renal registry in Hong Kong
among the different systems avoids unnecessary data transcription and hence minimize the error. Currently, there is a Renal Registry Steering Group and an Implementation Team formed under Central Renal Committee, HA to look after the direction and development together with the daily running and wellbeing of the system and data, respectively. MILESTONES OF RRT IN HONG KONG
The first acute hemodialysis (HD) was started in Hong Kong in 1962 (Figure 1). This was followed by chronic maintenance HD. The first cadaveric kidney transplant was performed in 1969 and the first living-related renal transplant in 1980. In 1980s, continuous ambulatory peritoneal dialysis (CAPD) was introduced. In 1985, the PD-first policy was adopted in HA. Automated PD was started in 1989. Despite the PD-first policy, there was also gradually a growing need for HD support for those PD patients who needed to switch because of complications and inadequate dialysis of PD. Nocturnal home HD was introduced in 2006, and a public–private partnership HD program was introduced since 2010. The data collected through RR have an important part in planning of renal services of Hong Kong. INCIDENCE AND PREVALENCE
In 1996, the number of incident patients was 615. In 2013, the number was steadily increased to 1147, making the incidence rate to 159 per million population (Figure 2). In 1996, there were 3312 patient on RRT (956 transplant, 491 HD, and 1865 PD). The number increased steadily and by 2013, there were 8510 RRT patients (3501 transplant, 1192 HD, and 3817 PD) (Figure 3). DEMOGRAPHIC DATA
For the year ending 31 December 2013, the median age of prevalent patients receiving RRT was 51.4 years, 44.6% of them were over 60 years and 18% were over 70 years. For new patients entering into RRT program in 2013, the median age was 59.1 years, 47.6% were over 60 and 22.1% were over 70 years. The trend of increasing number of elderlies in and entering into the RRT program was observed. Figure 4 shows
Chronic HD Cadaveric renal transplant
PD-first policy
HD Publicprivate partnership
APD
1962 1969 1980 1985 1987 1989 2006 2010 Acute HD
Living-related renal transplant
Living-unrelated renal transplant
Nocturnal home HD
CAPD
Figure 1 | Milestones of renal replacement therapy in Hong Kong. APD, automated peritoneal dialysis; CAPD, continuous ambulatory peritoneal dialysis; HD, hemodialysis; PD, peritoneal dialysis. 34
the rising age of incident patients put on PD with a significant rising trend in the age groups of 45–64 years and older than 75 years. GENDER
The male to female ratio of prevalent patients showed a gradual increase from 1.09 in 1996 to 1.29 in 2013. The incident patient also showed a similar trend from 1.28 in 1996 with further increase in male preponderance to 1.54 in 2013. PRIMARY RENAL DISEASE
Twenty-nine percent of new patients entering RRT in 1995 was due to glomerulonephritis, which showed a steady decrease to 17% in 2013. However, that from diabetes mellitus increased from 26.2% in 1996 to 49.6% in 2013. Figure 5 shows the trend of absolute number of the causes of new cases of RRT from the year 1996 to 2013. RENAL REPLACEMENT THERAPY
Of the 1147 new patients in 2013, 953 are on PD, 159 on HD, and 158 on renal transplant. More than 86% of new patients requiring dialysis are put on PD. In 2013, there were 1991 renal failure patients waiting for a kidney transplant. That year, 69 Cadaveric and 12 living-related transplantations were performed in HK, whereas 77 were performed outside HK. Thirty-five renal transplants were performed without any prior dialysis therapy (3%). In 2013, 3817 of prevalent patients were on PD, 1192 HD, and 3501 had transplant. The ratio of PD:HD was 76.2:23.8. Eighty-six percent of PD patients are on CAPD and the remaining 14% are on APD. There was a gradual trend of increasing use of APD (Figure 6). In all, 90.5% of HD is provided by in-patient centres. The prevalent kidney transplant patients showed a steady rise from 1996 till 2013 with increase mainly in the area of deceased donor renal transplantation (DDRT), whereas live donor renal transplantation patient numbers were relatively stable for the past 10 years (Figure 7). ERYTHROPOIESIS-STIMULATING AGENTS
In 2013, there were 65% of all RRT patients receiving erythropoiesis-stimulating agents (Figure 8). It was 29.3% in 1996. This was as a result of a significant increase of funding from the Government in the recent years to enhance the treatment of renal anemia in our RRT patients. DISCUSSION
The number of patients suffering from chronic kidney disease (CKD) is ever increasing. Early detection and management of renal disease is important to reduce the burden of end-stage renal failure requiring RRT. HA started the development of renal registry to help centres in collecting data systematically through daily patient management. The system was custom built for and by the clinicians with good input of data. Hong Kong, like many parts of the world, is seeing a gradual but significant increase in prevalent cases on RRT The Kidney International Supplements (2015) 5, 33–38
clinical research
CB Leung et al.: Renal registry in Hong Kong
Incident counts of different modalities of RRT, 1996–2013 1400 1200 All 1000 PD 800 600 400 HD
200
RTx 0
1996
1997
1998
1999
2000 2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
2013
All
615
700
785
815
873
934
925
923
956
995
1032
1025
1036
930
1037
1115
1181
1147
PD
526
597
700
719
781
787
742
748
746
810
803
822
827
752
815
888
913
953
HD
60
70
41
47
39
60
76
74
86
79
116
133
129
103
143
164
225
159
RTx
29
33
44
49
53
87
107
101
124
106
113
70
80
75
79
63
43
35
Figure 2 | Incident cases of renal replacement therapy (RRT) in Hong Kong, 1996–2013. HD, hemodialysis; PD, peritoneal dialysis; RTx, renal transplant.
9000 8000 7000
PD
HD
RTx
3817 3692
6000 3462 3328
5000
3401
3437
3547
3406
3279 3161 3054 2961
4000
2850 2705 2555
3000
2338 2069
2000 1000
552
1865
396 955
560
584
600
640
677
727
773
870
967
1066 1192
543 517
3501 3233 3319 3354 3442 2834 2922 3094 2461 2652 2254 1794 2047 1360 1553 1087 1201 423
473
483
2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 3 | Prevalent cases of renal replacement therapy in Hong Kong, 1996–2013. HD, hemodialysis; PD, peritoneal dialysis; RTx, renal transplant.
median age of prevalent patient on RRT is also shown to be increasing, and the biggest increase is seen in the age groups of 45–64 and over 75 years. RRT poses a heavy financial burden on the health-care systems around the world. The PD-first policy of Hong Kong was proven to be successful. It has been shown that no significant difference was found between PD and HD in patient survival around the world and it in fact may favor a slightly lower mortality in PD.1 In Hong Kong, strategies to improve the longevity of PD had been adopted including the introduction of automated PD usage since 1997 (the number of patient using APD is more than 500 (13.9% of all PD treatment) in 2013), early use of Icodextrin for patient with ultrafiltration failure, and poor DM control. Overall, cost for home therapies and in Kidney International Supplements (2015) 5, 33–38
particular home PD is less expensive than in centre dialysis programs around the world.2 As a consequence, the percentage of PD to HD in Hong Kong was as high as 82% in 2008. At the same time, we do see the need for some of the PD patients who may benefit from a timely switch to HD. Various strategies such as expanding incentre HD service in HA, developing public–private partnership HD centres, and promoting home HD were started. The latest PD to HD percentage distribution has decreased to 76.2% and 23.8%, respectively, in 2013. Palliative care as an option for some CKD stage-5 patients is developed through good individualized therapy and treatment plan. Erythropoiesis-stimulating agents were introduced for renal anemia, starting with self-payment in 1980s, then 35
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CB Leung et al.: Renal registry in Hong Kong
Incident counts of ESRD on PD—age stratified, 1996–2013 600
500 45–64 400
300
200
65–74 75+
100
20–44 0–19 2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 4 | Age trends of incident peritoneal dialysis (PD) population from 1996 to 2013. ESRD, end stage renal disease.
Trends in incident counts—by diagnosis, 1996–2013 600 550
Diabetes
500 450 400 350 300 250
Glomerulonephritis
200 150
Unknown causes
100
Hypertension Cystic kidney & other Other causes hereditary
50
2013
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
2012
Other urologic
0
Figure 5 | Causes of incident new cases on renal replacement therapy, 1996–2013.
subsidized programs, and finally through hospital provision. Patient general health and wellbeing were improved. The incidence of frequent blood transfusion with consequent side effects of iron overload was reduced. The incidence of hepatitis B and hepatitis C in dialysis population is also noted to be decreased.3 Transplantation is the best available RRT for those suitable patients.4 Owing to the shortage of organ availability, in 2013, there were only 69 cadaveric renal transplants and 12 live donor renal transplantations done in HK. The burden of increase demand on RRT from CKD affects Hong Kong as much as the global burden. This can only be improved with early detection of the CKDs by nephrologists 36
with the help from family physicians, general physicians and other health-care professionals, and patients themselves,5 and also prevention of patients from suffering of acute kidney injury.6 There is a plan to automatic integration of information available in the HA Clinical Management System including the laboratory, pharmacy data into the system to avoid unnecessary transcription, and to facilitate the individual units to have their own data analysis and audit. The data generated can be used to benchmark with Internatioal figures. The Hong Kong renal registry data were incorporated into United States Renal Data System (USRDS) annual report since 2000. This can help to improve the service Kidney International Supplements (2015) 5, 33–38
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% APD among chronic PD patient 13.89%
14.00% 12.24%
12.00% 10.04%
10.00% 8.06% 8.23%
8.00% 6.47% 5.52%
6.00%
4.98% 4.76%
4.89%
4.00%
4.90% 4.19% 4.37% 4.33%
4.36%
4.19% 3.14%
2.00% 0.00%
2013
2012
2011
2010
2008
2009
2007
2006
2005
2004
2003
2002
2001
2000
1999
1997
1998
1996
0.00%
Figure 6 | Rising trend of utilization of automated peritoneal dialysis (APD). PD, peritoneal dialysis. Prevalence of LDRT/DDRT, 1996–2013 as of 31/12 each year 3200
3083
3054
2800
2805
2400
2950
2681
All LDRT Number of patients
2896
2514
2433
All DDRT
2260 2070
2000 1864 1656
1600 1411
1200
1175 1003 858
800
774 659
400
358
344
314
297
379
392
384
391
402
393
392
409
429
414
424
428
415
408
2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 7 | Number of kidney transplant patients in Hong Kong, 1996–2013. DDRT, deceased donor renal transplantation; LDRT, live donor renal transplantation. 70%
34573500
65%
3228
Percentage of patients on ESA
65.00%
63.60%
3000
Number of patients on ESA
60%
2686
2500
55.70%
55% 2108
50%
1950 1682
45%
1517
993
30%
46.50% 46.50% 44.70%
1500
1234 1285
40% 35%
2000
2020
983
1030
39.60%
1104 1117 1127
1000
36.90%
860
34.10% 33.20% 32.00%32.20% 31.30% 31.00%31.50%30.70% 30.30% 29.30%
690
500
25% 2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0
Figure 8 | Number and percentage of prevalent dialysis patients on erythropoiesis-stimulating agents (ESAs), 1996–2013. Kidney International Supplements (2015) 5, 33–38
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in Hong Kong by a comparison with the rest of the world and also contribute toward a better understanding of epidemiology of renal failure among various ethnic groups and socioeconomic status. CONCLUSIONS
Renal Registry in Hong Kong is a computerized system that uses online real-time data input and access to provide timely data and information to facilitate patient care and management. It also provides invaluable data to help in development and planning of service and for projection of demand of renal services. The success of a registry requires the engagement of front-line staff in timely and accurate entry of the information, which in turn helps their own clinical work and management.
CB Leung et al.: Renal registry in Hong Kong
transplant coordinators and all the staffs of Transplant and Immunogenetics Laboratory. We also thank the members of the Renal Registry Steering Group of the Central Renal Committee, Hospital Authority: Philip Li (Chairman), Andrew Wong, KF Chau, WK Lo, Alexander Chiu, Frank Chan, CB Leung, Joanna Pang, Johnny Lam, and members of the Renal Registry Implementation Team: CB Leung (Chairman), Stanley Lo, Maggie Ma, S Yeung, CH Tam, SK Yuen, PN Wong, Samuel Fung, WM Lai, SF Cheung, YL Cheng, Bonnie Kwan, HM Cheng, Anthony KC Hau, John YH Chan, Irene Kong, MC Law, Johnny Lam and Nicholas Yeung, Joanna Pang, Frank Chan, and YW Ho. This supplement was supported by a grant from the 59th Annual Meeting of the JSDT. REFERENCES 1. 2.
DISCLOSURE
The authors declared no competing interests.
3.
ACKNOWLEDGMENTS
We thank all the medical and nursing staff of Alice Ho Miu Ling Nethersole Hospital, Caritus Medical Centre, Kwong Wah Hospital, North District Hospital, Pamela Youde Nethersole Eastern Hospital, Prince of Wales Hospital, Princess Margaret Hospital, Queen Elizabeth Hospital, Queen Mary Hospital, Tseung Kwan O Hospital, Tuen Mun Hospital, Tung Wah Hospital, United Christian Hospital, Yan Chai Hospital, and Yaumatei Specialist Clinic for contribution toward entering the renal patient data. We thank the support of all the
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4.
5.
6.
Li PKT, Chow KM. Peritoneal dialysis first policy made successful: perspectives and actions. Am J Kidney Dis 2013; 62: 993–1005. Li PKT, Cheung WL, Lui SL et al. Increasing home based dialysis therapies to tackle dialysis burden around the world: a position statement on dialysis economics from the 2nd Congress of the International Society for Hemodialysis. Nephrology (Carlton) 2011; 1: 53–56. Leung CB, Ho YW, Chau KF et al. Renal replacement therapy for chronic hepatitis B carrier: a subgroup analysis from the Hong Kong Renal Registry 1995–1999. Hong Kong J Nephrol 2000; 2: 104–109. Li PKT, Chu KH, Chow KM et al. A cross sectional survey on the concerns and anxiety of patients waiting for organ transplants. Nephrology 2012; 17: 514–518. Li PKT, Chow KM, Matsuo S et al. Asian chronic kidney disease best practice recommendations—positional statements for early detection of chronic kidney disease from Asian Forum for Chronic Kidney Disease Initiatives (AFCKDI). Nephrology (Carlton) 2011; 16: 633–641. Li PKT, Burdmann EA, Mehta RL. Acute kidney injury: global health alert. Kidney Int 2013; 83: 372–376.
Kidney International Supplements (2015) 5, 33–38
