Clinical practice guidelines for the provision of renal service in Hong Kong: Use of Registry by Renal Units
INTRODUCTION
All renal units in Hong Kong need to keep track of their services, in particular, renal replacement therapy, to the patients, which allow peer comparison on service model and provide basis to excel service provision. Databases are developed in collection and utilization of data. To have meaningful comparison, better estimation and reflection on the provision and service scope, and a better representation of patients requiring renal replacement therapy in Hong Kong, a minimum data set is suggested.
DEVELOPMENT OF RENAL REGISTRY IN HOSPITAL AUTHORITY
It is developed in 1995, initially for the allocation of cadaveric kidney for transplantation under agreed rules and calculations. The entry of clinical data enabled the Renal Registry1, 2 to collect other information that is essential for patient management as a clinical summary,3 the renal unit can use the data for calculation of workload statistics, monitoring of complications and auditing of services provision and clinical parameters. Hospital Authority (HA) Head Office can use the data in planning of future renal services of the whole HA and identify pressure areas, provision of workload statistics and peer comparison of services provision and setting of standards. Data collected can be shared with various stakeholders, including local organization such as NGO, health-care professions and media to facilitate advancement of the health care, by publications4, 5 and other appropriate means; and can generate valuable information through analysis, auditing and research. The data can be shared with international stakeholders periodically or on an ad hoc basis to advance global kidney health. Currently the data is shared with the United States Renal Data System (USRDS)6 annually, which is published and available freely in the internet.
GUIDELINE STATEMENT ON RECOMMENDATIONS ON DATA ENTRY AND COLLECTION
| 1 | General | |
|---|---|---|
| 1.1 | All data should be updated regularly. | [R] |
| Background | To have a better representation of Hong Kong Special Administrative Region (HKSAR) data, it is recommended to have a common data set as agreed by all stakeholders including HA, Charitable organisations, private hospitals, dialysis facilities and clinics, private nephrologists and nursing staff. | |
| Rationale | A regular, up-to-date data maintenance, at least once yearly is recommended, preferably on 31 December of each calendar year. Units are encouraged to update the data as soon as possible | |
| 1.2 | Data is categorized into mandatory or optional. | [R] |
| Rationale | Optional data can be entered at units’ own preferences and mandatory data are the core data set required as agreed. Data field in HA Renal Registry (RR) (RR-M02.docx) is attached in appendix for easy reference. There are mandatory items every HA renal unit should enter when enrolling a new patient to renal replacement therapy (RRT) programme in order to ensure annual organ registry and transplant system (ORTS) report to be produced. |
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| 1.2.1 | Mandatory data should be entered as soon as possible, and preferably within 2 weeks of event had taken place. | [D] |
| 1.2.2 | Each unit should ensure the data update is done at least annually. | [R] |
| 1.2.3 | Optional items are to be entered at the discretion of individual renal unit. The more data you enter, the more comprehensive data set can be used in provision of health care. | [D] |
| 2 | Patient | |
| 2.1 | Demographic data | |
| 2.1.1 | Data to identify the patient including name, unique identification (Hong Kong identity card number or equivalent), sex, age (can be calculated if date of birth is available) as these provides a means to identify individual patient correctly. | [R] |
| 2.1.2 | Patient correspondence address and phone number should be recorded for easy tracking of patients. | [D] |
| 2.2 | Responsible centre | |
| The unit provide primary RRT care should be documented clearly with date of starting and ending. | [R] | |
| Rationale | The information of the unit in provision of renal care is important as centre effect can affect quality and provision of services. Date on claimed and ending of responsible centre of a patient on RRT should be in agreement between the releasing and in-taking units, so that the treatment dates are back to back to enhance data integrity. |
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| 2.3 | Diagnosis | |
| The cause leading to end-stage renal failure (ESRF) and RRT should be entered. This will provide valuable information on the aetiology of renal failure. The categorization is suggested to follow international standard for easy comparison. | [R] | |
| 2.4 | Survival status | |
| 2.4.1 | If a patient died, it is important to input the date and cause of death. This can generate important information on the survival pattern and causes of death so that measures can develop accordingly. | [R] |
| 2.4.2 | A regular data enquiry with death registry of government and/or HA (PAS) database are suggested for prompt information related to unreported death. | [D] |
| 2.4.3 | A categorized cause of death for better comparison between centres and international data is preferred. Centres should make effort in determining the immediate cause of death for meaningful data entry. | [R] |
| 2.5 | Optional patient data | [D] |
| Rationale | Centres can feel free to develop and enter data to suit one's clinical need. Optional data sets in HA RR can be referred to appendix. These are not exhaustive and currently include:
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| 3 | Treatment modality | [R] |
| Rationale | One of the following as major treatment can be entered – conservative, peritoneal dialysis (PD), haemodialysis (HD) or transplant. Only patients actively on PD, HD or transplant are considered as having long-term RRT. The data should be updated at least once yearly and preferably as soon as possible. | |
| 3.1 | Peritoneal dialysis | |
| 3.1.1 | The date of commencement, ending and cause | [R] |
| 3.1.2 | Type of PD (Continuous ambulatory peritoneal dialysis (CAPD) vs automated peritoneal dialysis (APD)) | [R] |
| 3.1.3 | Connection system | [D] |
| 3.1.4 | Payment mode | [D] |
| 3.1.5 | Access (Tenckhoff's catheter) creation date | [R] |
| 3.1.6 | Dialysis adequacy (Kt/V) data | [R] |
| 3.1.7 | Exit site infection (as below) | [D] |
| 3.1.8 | Peritonitis data | [R] |
| 3.1.8.1 | Date | [R] |
| 3.1.8.2 | Organism | [R] |
| 3.1.8.3 | Antibiotics usage | [D] |
| 3.1.8.4 | Outcome (responded, relapsed, failed) | [R] |
| 3.2 | Haemodialysis | |
| 3.2.1 | Treatment Start and End date with cause | [R] |
| 3.2.2 | Treatment type (conventional HD vs nocturnal HD, centre based vs home) | [R] |
| 3.2.3 | Vascular access (arteriovenous fistula (AVF) vs graft vs catheters – non-cuffed/cuffed) | [R] |
| 3.2.4 | Payment method (self vs subsidized – HA, charitable, public private partnership (PPP)) | [D] |
| 3.2.5 | Dialyzer model | [D] |
| 3.2.6 | Dialysate (bicarbonate vs others) | [D] |
| 3.2.7 | Duration and frequency of dialysis | [D] |
| 3.2.8 | Kt/V (standardized vs single pool) to allow comparison as key performance indicator (KPI) | [R] |
| 3.3 | Transplant | |
| 3.3.1 | Before transplant | |
| 3.3.1.1 | Patients who are on HA cadaveric renal transplant waiting list should be registered in registry, with arrangement to have blood taken for human leukocyte antigen typing and regular periodic antibody screening performed in transplant and immunogenetics (T&I) in Laboratory in Queen Mary Hospital (QMH) | [R] |
| 3.3.1.2 | Date of registration is the date commenced on long-term renal replacement therapy | [R] |
| 3.3.1.3 | A regular and periodic review on the eligibility on list, with temporary or permanently off list if patient is not suitable to receive transplant | [R] |
| 3.3.1.4 | The following are mandatory data should be entered:
|
[R] |
| 3.3.2 | After transplant | |
| 3.3.2.1 | Early transplant registry updating (within a week) to remove name from waiting list | [R] |
| Rationale | To avoid allocating graft to a ‘recently-transplanted’ patient | |
| 3.3.2.2 | Early transplant data to include following details if available: | |
| 3.3.2.2.1 | Donor relationship with patient (cadaveric vs living) | [R] |
| 3.3.2.2.2 | Side of kidney to be transplanted | [D] |
| 3.3.2.2.3 | Date of transplantation | [R] |
| 3.3.2.2.4 | Donor demographic (sex and age, cardiac status on donation) | [D] |
| 3.3.2.2.5 | Induction and immunosuppressive drugs | [D] |
| 3.3.2.2.6 | Status of kidney transplanted – cold ischaemic time, second warm ischaemic time, days of graft non-functioning | [D] |
| 3.3.2.3 | Long-term transplant data | |
| 3.3.2.3.1 | Long-term outcome after transplantation (at least yearly) | [D] |
| 3.3.2.3.2 | Cause for graft failure and date | [R] |
| 3.3.2.3.3 | Complications | |
| 3.3.2.3.3.1 | Rejection | [R] |
| 3.3.2.3.3.2 | Infection | [D] |
| 3.3.2.3.3.3 | Vascular | [D] |
| 3.3.2.3.3.4 | Malignancy | [R] |
| 3.3.2.3.3.5 | Surgical events (lymphocoele, urinoma, vascular complications) | [D] |
| 3.4 | Optional items | |
| Centres can develop according to clinical need. Other optional data sets in HA RR are attached in appendix for easy reference. These are non-exhaustive and currently include: | [D] | |
| 3.4.1 | Conservative (dialysis not necessary vs palliative) | |
| 3.4.2 | Erythrocyte stimulating agent – type and dose per month | |
| 3.4.3 | Blood transfusion (date and number of units) | |
| 3.4.3.1 | on transplant waiting list | [R] |
| 3.4.3.2 | not on transplant waiting list | |
| 3.4.4 | Growth hormone | |
| Rationale | All the optional items are up to individual units, except if the patient is actively on transplant waiting list, the entry of blood transfusion amount and date is mandatory to, arrange schedule to check antibody sensitization and development for facilitation of organ allocation (see section Transplant). | |
| 4 | Potential Use of Renal Registry Data | |
| Units are encouraged to utilize the data collected to help generating data and information important to improve service provision. This can include, but not exhaustive of, the followings: | ||
| 4.1 | Growth of the RRT population | [D] |
| Rationale | This includes the number and ratios of patients on each kind of RRT, including peritoneal dialysis (PD), haemodialysis (HD) and Transplants (living/cadaveric) modalities and their characteristics (age, sex and adequacy). | |
| 4.2 | Patients on transplant waiting list | [R] |
| Rationale | Regular updating and review on the suitability to remain on transplant waiting list with prompt communication with T&I to optimize resources utilization. | |
| 4.3 | Audit cycles and KPI | [D] |
| Rationale | Centres can use the data for meaningful peer comparison of KPI and find ways for continuous quality improvements (CQI). References can be made to other sections in this guideline on the various recommendations. | |
| 4.4 | Sharing of data to improve service provision to HK and internationally | [D] |
| Rationale | This includes, but not exhaustive of, data retrieval for CQI and audit purpose, data uploading to international sites for comparison between HK and the rest of the World, and in the promotion of global renal health. |
