of the Nigerian National System of Cancer Registries (NSCR)

Transcription

1 ri Nig e ational S ys f mo te N an Newsletter of the Nigerian National System of Cancer Registries (NSCR) Edition

2 NSCR in Brief The NSCR was conceived in 2009, as a collaborative effort between the Institute of Human Virology Nigeria (IHVN), Federal Ministry of Health (FMOH), and cancer registries of federal health institutions in Nigeria. The main objective of this program is to provide data from Nigerian cancer registries on the most common cancers, cancer incidence and cancer mortality statistics. This objective is being achieved through collaboration and support from local and international partners such as the International Agency for Research on Cancer (IARC), International Prevention Research Institute (ipri) and Society of Oncology and Cancer Research of Nigeria (SOCRON) and the African Cancer Registry Network (AFCRN). In this issue: NSCR: The Journey so Far AFCRN and NSCR Report on the AFCRN Advanced Training Course on Registration Methods Challenges of Cancer registration in Nigeria and the way forward Cancer Registry- news Acknowledgment Edited by: Dr. Elima Jedy-Agba, Dr. Emmanuel Oga and Dr. Michael Odutola Designed by: Akinkunle Oyafajo Project PI: Dr. Clement Adebamowo MD, ScD Project Administrator: Yinka Owoade

3 Nigerian National System of NSCR: THE JOURNEY THUS FAR he NSCR was conceived as a collective effort of the Institute of Human Virology Nigeria (IHVN) Tand the Federal Ministry of Health (FMOH), Nigeria. Now in its 4th year of existence, The NSCR has been able to revive national consciousness in Cancer Registration, successfully setting up registries across the country and in some cases has revived defunct ones. As a result of this collaborative effort, there are now 3 population-based cancer registries and several hospital-based registries most of which are working to effectively become population based in the near term. The NSCR, working with dedicated persons in several institutions, provided support for the establishment of cancer registries in Yenagoa, Owo and Abeokuta in The NSCR has trained and retrained several registry heads, cancer registrars and data clerks; it continues to provide technical and material support for cancer registration. The NSCR has developed a cancer registry monitoring and evaluation form for cancer registries in Nigeria. This form will be used to document weekly registry activities and periodic site visits to ensure steady progress and tackle challenges early and effectively. The success of any Cancer Registration program is measured by how much its data is used for surveillance, healthcare planning and research into cause, prevention and treatment of Cancer. To this end, the work of the NSCR and its member registries has been cited by the Federal Ministry of Health. During the 4thInternational Cancer Week Activities in October, 2012; The Minister of Health stated how the data produced by NSCR showing the cancer burden in Nigeria has moved the Ministry to provide Mobile Cancer screening vans, Radiotherapy equipment and outreach programs to reach local communities. Health Care professionals are now being trained by the Ministry for Specialised Cancer Care. n 2012 NSCR became a member of the African Cancer Registries Network (AFCRN), a body serving to Iimprove cancer surveillance in the continent of Africa. AFCRN consultants along with the monitoring team of NSCR visited 8 registries in Nigeria in November, AFCRN also facilitated the advanced training of a member of NSCR in the use of CANREG 5 at IARC (a World Health Organisation agency), thus providing Nigeria -and indeed West Africa- with a local trainer in the use of this software. AFCRN and NSCR 2013 Nigerian All Right Reserved Page 3

4 Nigerian National System of ADVANCED TRAINING COURSE ON REGISTRATION METHODS, NOVEMBER 2012, ABUJA. The AFCRN in collaboration with NSCR and IHVN held an Advanced Training Course on Cancer Registration Methods, which took place between the 19th and 23rdof November, 2012 at the IHVN training room in Abuja, Nigeria. The program was organized with the objective of training and equipping selected cancer registrars on Cancer registration methods and how to be effective and efficient in data abstraction, collation and analysis. The training was declared open by the Honorable Minister of Health, Prof Oyebuchi Chukwu, represented by Dr. FACULTY MEMBERS Omobolanle Olowu, ; Director of Public/private AT THE TRAINING WERE; partnerships and Diaspora, in the Federal Ministry of Dr Maxwell Parkin (CEO AFCRN and Health. The Minister acknowledged the AFCRN, NSCR and President INCTR), Dr. Iman Martin IHVN and their effort towards providing efficient cancer (Epidemiologist, Chicago USA), Mr registration, stating that cancer registration remains the Eric Chokonunga (Director Harare key in providing information and data about cancer Zimbabwe Cancer Registry), Ms incidence, which can be used for public health program Catherine Okello (Epidemiologist, planning and cancer control. London UK), Prof. Femi Ogunbiyi The training was attended by both local and international (Consultant Pathologist, Ibadan participants. There were 22 participants in total (18 from Nigeria), Dr Rasaaq Oyesegun Nigerian cancer registries and 4 others from other African (Consultant Radiotherapy and countries including; Gabon, Kenya and Seychelles. Topics Oncology, National Hospital covered included but were not limited to: basic principles Abuja), Dr Elima Jedy-Agba of oncology, cancer staging and grading, principles of ( C o o r d i n a t o r N S C R ) a n d D r cancer registration, principles of data presentation, data Emmanuel Oga (NSCR Monitoring management and analysis, and use of CanReg5 software team). in cancer registration. Participants had the opportunity to ask questions that had been unclear to them and appropriate answers were provided. At the end of the training, the participants were all excited about CanReg5 and commended the AFCRN, NSCR and IHVN for organising the course, and they expressed their views on the need for more of such trainings in the future Nigerian All Right Reserved Page 4

5 ri CROSS SECTION OF PICTURES Nig e ational S ys f mo te N an Dr. Omobolanle Olowu,, Director of Public/private partnerships and Diaspora, in the Federal Ministry of Health (representing the Honorable Minister of Health) declaring the training opened Dr Maxwell Parkin, CEO AFCRN and President INCTR, delivering the opening speech at the training 2013 Nigerian All Right Reserved Page 5

6 ri CROSS SECTION OF PICTURES Nig e ational S ys f mo te N an Dr Iman Martin delivering her lecture on data entry, management and analysis Dr Elima Jedy-Agba, NSCR Coordinator, supervising the participants as they engage in their training exercises 2013 Nigerian All Right Reserved Page 6

7 ri Nig e ational S ys f mo te N an Dr Emmanuel Oga delivering his lecture on CanReg5 application in Cancer Registration AFRCN CONSULTANTS SITE VISIT The week before the training, consultant site visits were conducted to 8 cancer registry sites in Nigeria. These visits held from the 13th to 16th of November, 2012 and were carried out by members of the AFCRN and the NSCR. Activities of the registries were observed and evaluated, their challenges were noted and recommendations made Nigerian All Right Reserved Page 7

8 ri Nig e ational S ys f mo te N an CROSS SECTION OF PICTURES IBADAN CANCER REGISTRY Dr. Max Parkin (AFCRN), Prof. Femi Ogunbiyi, Mrs. Agnes Fabowale and other members of staff of the Ibadan Cancer Registry. CALABAR CANCER REGISTRY Dr. Max Parkin (AFCRN), Prof. Ekanem, Dr. ELima Jedy-Agba, Mr. Joel Bassey and other members of the Calabar registry Nigerian All Right Reserved Page 8

9 ri Nig e ational S ys f mo te N an CROSS SECTION OF PICTURES ENUGU CANCER REGISTRY From left to right: Ms. Kamalu Happiness (Data entry clerk) Mr Eric Chokunonga (AFCRN), Ms. Udodirim Eyinnaya (cancer registrar), Ms. Udeh (senior cancer registrar), Dr. Emmanuel Oga (NSCR), Ms. Ann Okoroafor (cancer registry), and Ms. Irene Okafor (data entry clerk) at the Enugu registry From left to right: Dr. Emmanuel Oga (NSCR), Ms. Afomma Okeke, Ms Gloria Oyeoka (cancer registrar), Mr. Eric Chokunonga (AFCRN), Dr. Cornelius Ukah (supervisor, cancer registry) at the Nnewi registry Nigerian All Right Reserved Page 9

10 ri Nig e ational S ys f mo te N an CROSS SECTION OF PICTURES UPTH PORT HACOURT CANCER REGISTRY Mr. Dee Emmanuel (Cancer Registrar), (Medical records officer), Mr. Eric Chokunonga, Ms. Barasin Solomon (Nurse), Ms. Gift Oviemuno (Cancer registrar) at the Port Hacourt Registry UITH ILORIN CANCER REGISTRY From Left to Right: Mr. Lawal (Secretary to CMAC), Tunde Ayilara (Cancer Registrar), Dr Adeniji K. A (consultant pathologist), Prof Afolayan (Cancer Registry Director), Dr. Iman Martin (AFCRN), Dr Alabi B. S (CMAC UITH),Mr Tosin Oluokun (Statistician UITH) and Dr. Michael Odutola (NSCR) at the Ilorin Registry Nigerian All Right Reserved Page 10

11 Nigerian National System of CROSS SECTION OF PICTURES LASUTH CANCER REGISTRY Left to Right: Dr. Iman Martin (AFCRN), Dr Popoola ( Cancer Registry Director), Cancer unit Administrator, Mr. Reuben Ogunleke (Cancer Registrar) and Dr. Michael Odutola (NSCR) inside the Lions Center, which houses the LASUTH registry in Lagos Nigerian All Right Reserved Page 10

12 Nigerian National System of CHALLENGES OF CANCER REGISTRATION IN NIGERIA AND THE WAY FORWARD The recognition of the need for cancer registration and enthusiasm for its establishment at the Federal government level has been encouraging but the response at state level and individual institutions of health has been weak. In Nigeria the impact of the AIDS pandemic, Malaria and Tuberculosis has been devastating, thus cancer registration has wrongly been considered to be of less importance, more so in the light of insufficient funding. Other challenges include: The inadequacy of some of our health facilities in terms of quality of care is a problem; diagnosis is often based on clinical (bedside) assessment alone, reducing validity of cancer registry data. Many cancer sufferers end up with traditional healers and are not captured by cancer registration. Follow up of cancer cases recorded in registries to provide up-to-date information for each case has not been fully achieved. Limited availability of vital statistics population data and death records - which complement cancer registration present another challenge. A routine autopsy that could provide the diagnosis in a patient, whose cancer had been so far missed until death occurred, is not always performed. Reaching out to sources of data outside of the primary institutions where the registries are domiciled presents several challenges for cancer registrars: Logistic snags are significant as registries are poorly funded by their hospital managements to carry out such functions. Privately-owned institutions of health are not always cooperative with cancer registrars sourcing for data. Additionally, because cancer registration is often not given sufficient priority, dedicated persons are not employed for this task. The registries are mostly staffed by workers who have other areas of expertise or interest that are redeployed to cancer registration. To make matters worse, these workers are frequently moved between departments making it particularly difficult for young registrars to build a dedicated career in cancer registration. Weak utilization of cancer registry data in years past may have served to demoralize registrars as well; and deter fresh entrants into the field Nigerian All Right Reserved Page 12

13 Nigerian National System of WAY FORWARD The prospects of cancer registration in Nigeria are exciting. Government recognition of the significance of this activity, the availability of already trained registry heads and registrars; and the cancer generated by these registries give cause for optimism. Sustained effort and innovative problem solving at all levels will be required for this exciting prospect to be translated into continued success on the ground. There should be strong federal legislations enforcing cancer registration, the case for making cancer a notifiable disease in Nigeria should be considered. Hospital directors should be provided with specific budget allocations for cancer registration and be held to account if this is not effectively implemented. Furthermore, the role of cancer registrars in tertiary institutions of health should be recognized and specific job portfolios created for it. The registries that already exist should be fully supported. It is necessary to have vital statistics, like population figures and death reports, available in a timely, detailed and accurate manner; the burden of this lies specifically with government. More institutions should be encouraged to make the upgrade to population based cancer registration, especially in regions where this does not already exist. CANCER REGISTRY- NEWS Three new cancer registries came into existence in (1) Abeokuta, Ogun state. The cancer registrar is named Adeyanju Adedeji, (2) Owo, Ondo State; the cancer registrar is Owolabi Opeyemi and (3) Yenagoa, Bayelsa state. Cancer registrar is Orieno Omamezi. The effort of NSCR was recognized once again by the Honorable Minister of Health during the 4th International Cancer Week, October Mr. Charles Ugiaweh, The senior Cancer Registrar in the Benin registry has retired from service Ms. Barasin Solomon and Gift Oviemuno have joined the registry team in the Port Hacourt registry Nigerian All Right Reserved Page 13

14 Nigerian National System of ACKNOWLEDGEMENT NSCR is a collaboration between the FMOH of Nigeria; IHVN; Greenebaum Cancer Center, Institute of Human Virology and Department of Epidemiology and Public Health of the University of Maryland Baltimore. The activities of the NSCR are partly funded by IHVN-UM Capacity Development for Research into AIDS Associated Malignancies (CADRE) grant (NIH/NCI D43CA ) from the National Cancer Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute, National Institutes of Health. CLOSING REMARKS There is every reason to be excited about the prospects of cancer registration in Nigeria. Government recognition of the significance of this activity, the availability of already trained registry heads and registrars; and the cancer data coming out of the registries give cause for optimism. Sustained effort and innovative problem solving at all levels will be required for this exciting prospect to be translated into continued success on the ground. Data from Nigeria needs to make a re-entry into Cancer Incidence in Five Continents (CI5); this is a WHO publication of cancer statistics from the world over. To achieve this, close monitoring of indices of data quality in Cancer Registration must be sustained. Please send contributions and suggestions to elima.jedyagba@gmail.com CHECK US ON THE WEB: CONTACT INFORMATION: Institute of Human Virology, Nigeria Pent House, Maina Court, Plot 252, Herbert Macaulay Way Central Business District P.O. Box 9396, Garki, Abuja. NIGERIA. Tel: +234 (097) info@ihvnigeria.org 2013 Nigerian All Right Reserved Page 14