Visit to Gulu (Lacor Hospital), Uganda
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Month: Feb
Dates: 19-21
Year: 2014
Location: St Mary's Hospital, Lacor
City: Gulu
Country: Uganda
Background Information: The visit was undertaken following discussions with Dr. Martin Ogwang and Ian Magrath regarding the establishment of a population based registry in St Mary's Hospital, Lacor
Purpose/Goals: To review the possibility of establishing a population based registry serving the population of Gulu and to discuss the population(s) that would be covered.
INCTR Program: Cancer Registries
INCTR Branch: INCTR Challenge Fund
Coordinator(s): Dr Max Parkin; Dr Martin Ogwang
Other INCTR Organizers:
Collaborators: Dr Martin Ogwang and staff
Institutions: St Mary's Hospital, Lacor
Serena Hospital
Number Attending:
Participants: N/A
Sponsors: OFID
Evaluation: Registry population:
The geographic area served by the hospitals in Gulu is primarily that of the Northern region. The target population of the registry should be much smaller, however. It is suggested that the pre-2007 Gulu district, covering 4 counties (Kilak, Nwoya, Aswa and Omoro) might be the most appropriate:

Populations (2014 estimates)
Gulu district 418,650
Amuru & Nwoya districts 245,350

Sources of information for the registry:
 (Hospitals in registry area)
St Mary’s Hospital, Lacor is the largest hospital, and a regional referral centre. It is run by the diocese of Gulu and mainly funded by voluntary donations, especially via the Conti Foundation. It has 482 inpatient beds, organized into the 4 major services. There are no specialist services, and no specialist oncology. The radiotherapy department has been closed for several years. There is however a palliative care unit, dealing mainly with terminal cancer patients and a unit within the paediatric ward treating childhood tumours especially Burkitt lymphoma and nephroblastoma. There is a well-organized central records department. There is a computer database of all hospital admissions, including demographic data and diagnosis. Diagnosis is coded to an idiosyncratic local code (based around hospital specialties). Data on outpatient consultations are also entered – as diagnosis/age/sex, allowing daily tallies, but there is no demographic data on patients. There is a full time IT Manager (Paolo Corna) who designed the system and can easily customize outputs (it.office@lacorhospital.org)

Gulu Regional Hospital
It is the main government referral hospital, providing services for the Northern region. It is located Gulu town. 350 beds, with 17 different services, including, as well as the basic specialties (Medicine, Surgery, Obstetrics (maternity) gynaecology, paediatrics), ENT, Ophthalmology and Mental Health. There are no specialist services for cancer patients. There are basic lab services and diagnostic radiology. The medical records department provides only storage for records (by ward and month). Case finding will require scrutiny of the Discharge Register maintained in each individual ward. This includes patient details (including name, sex, age, address, diagnosis and date of discharge, and hospital record numbers. It may be possible to trace the records, if necessary to check the diagnosis (which is entered by nursing staff) and to collect additional information.

Gulu Independent Hospital
A private hospital with about 80 in-patient beds
Military Hospital (100 beds)
Anika Hospital (100bed) (district level hospital) in Nwoya county, now Nwoya District.

Pathology laboratories
The only laboratory performing histopathology is in Lacor hospital. The laboratory has technical services, but no resident pathologist. Services are provided by visiting pathologists from Italy; some specimens are sent to Makerere.
The lab is also responsible for all bone marrow specimens. These are read by the Clinical Haematologist, Dr. Valeria Calbi ( e-mail: valeria.calbi@gmail.com)

The pathology lab has a well-organized computer database. Details of patients are entered (including address – as village) – and diagnosis. The latter is coded to ICD-10 by the pathologists, but the full details of the pathology are entered en clair

Hospitals outside the registry area
Patients from Gulu treated in hospitals in Kampala could be identified by the Kampala cancer registry, as could those diagnosed in the pathology laboratories (public and private) in Kampala.

Methods of registration
Lacor Hospital
Case finding can be performed using the existing databases in the hospital, although some modification to them would be desirable.
In the Pathology department, a database is maintained that is used to prepare the histology reports. The database was created some years ago. Patient data are entered from the request form, followed by the results (and date) of the pathology exam, and diagnosis coded to ICD-10 (2-digit) which has been written on the form by the pathologist. Patient details include name, age and source of specimen (including hospital and ward); address of patient, usually as village, sometimes with district. There are 3 files – for pathology, cytology, and pap smears.

In the Medical Records Department, databases are maintained for Hospital Admissions, and for

Outpatient activity
For Hospital Admissions, the data entry is from the record face sheet (filled at the time of hospital registration) and the discharge abstract in the case records. All files are brought to the Records department by its staff when the patient is discharged,

The Admissions database includes all relevant patient data (as shown on the sheet). Diagnosis on discharge (only one per patient) is coded according to an idiosyncratic local coding scheme, based around likely hospital specialty treating such a condition. None of the other variables are coded. The IT manager can create an output file, and by mapping the local codes to ICD-10, select the relevant cases (C00.0 – C99.9).

The outpatient database has no demographic data. It lists numbers of patients, by diagnosis (local codes), age, sex, hospital service, date. The purpose it to tally hospital activity.
 Gulu Hospital
Case finding will require visiting each ward, at intervals of 1 month or so, to identify potential cases from the Discharge Registrar maintained in each individual ward. A provisional registration is made for all individuals, with a diagnosis of cancer (including all the information in the register: name, sex, age, address, diagnosis and date of discharge, and hospital record numbers. For patients with missing information, the case record will have to be located in Medical Records, to complete the registration form for the individual.

Other Hospitals
The collaboration of the other three hospitals should be solicited, and the methods of case finding – should they agree to collaborate

Recommendations
It would be relatively easy to develop and maintain a Population based cancer registry for Gulu. This would provide a second focus of cancer registration in Uganda. A functioning cancer registry is also the basis for research into the distribution and cause of cancer (especially the ongoing projects related to Burkitt Lymphoma), and would be a very useful resource, given the presence of a medical school and faculty, and the resulting interest in medical research.

Physical requirements
Requirements in terms of staff and physical facilities are modest. Given the relatively simple data collection procedures required, one full time staff member will be needed, their contribution supplemented by the supervisory input of a medical officer to assist with terminology and coding, the medical director of the registry, and modest secretarial help.

The cancer registrar would ideally have some background in public health, medical records, or nursing. Some experience in computing/IT would be an advantage, but given the presence of an IT manager in Lacor Hospital, the required manipulation of computer databases should be assured.

A cancer registry will require office space (ideally, a small office, with adequate storage and filing), with a desk top computer, printer/photocopier/scanner, and USP. Internet access is more or less essential, and a small lap top computer is a valuable addition.

Running costs
Other than staff salaries, some provision should be made for operating costs. These include:
Consumables (paper, computer supplies, internet connection, etc.)
Transport (to permit weekly visits to Gulu Hospital, and, eventually the other 3 hospitals (Gulu Independent, Military Hospital, Anaka Hospital) at 2-3 month intervals.

Management
A small registry committee involving the principle stakeholders (Dr. Ogwang, representatives of the other hospitals, a representative of the health department) should be set up. It need meet only infrequently (1-2 times yearly) to review progress and policy. Regular staff supervision, as well as advice on diagnostic and coding and indexing of diseases issues is the responsibility of the Medical Director (a part time role).

5.4 Target population
The registry are ((population for which case identification and recording aims to be complete) should comprise the former (pre 2007) Gulu district, comprising 4 counties: (Kilak, Nwoya, Aswa and Omoro) with 18 sub counties. It is recommended that the registry nevertheless record all cancer cases identified, carefully recording the place or residence of each.

Data items/the registration document
The proposed data collection form is attached as Annex 1. It shows the 24 variables that it is intended should be collected, as listed in TABLE 1 below (those that are coded marked with *).
Local coding schemes for Ethic Group (same as Kampala Cancer Registry, Address/Place of Residence, and Source of Information are included in Annex 1 (see attached file).
Recurring Meeting: Date Next: Not yet decided
Meeting Image1: file:guluregion/Guluregion.jpg
Meeting Image2: file:afcrn/AFCRN.jpg
Meeting Image3: file:blank/Blank.jpg
Document: Click on "Files" for Word Document

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