Progress Report My Child Matters (MCM) Program – Kenya

Education for early detection and treatment of burkitt lymphoma and determination of environmental/familial factors associated with its occurrence.

The My Child Matters program is a joint endeavor of UICC and sanofi-aventis designed to provide support for institutions or non-governmental organizations working in resource-limited countries in the general area of childhood cancer. Funding is based on grant proposals submitted to a steering committee from pre-selected countries – more are added each year – on any topic relevant to the care of children with cancer or support for their families. Each project is assigned a mentor, usually a member of the steering committee to advice on the conduct of the project and assists awardees to achieve their goals. This unique program was initiated in 2005 and to date 33 grants have been awarded for a broad range of projects in 21 countries.

Background

Burkitt lymphoma (BL) is a cancer found mainly in children. It occurs sporadically throughout the world and in endemic pockets in the tropical belt of Africa. In Kenya the disease is seen in Lake Victoria region and the coastal lowlands. This study has so far shown that about 100 cases are reported annually in Western Kenya, which is also known to have widespread poverty. As in other low resource countries, treatment of BL is not readily available in Kenya and outcomes tend to be poor.

Objectives

The primary objectives of this project are to determine knowledge, attitude and practice (KAP) concerning BL among communities living in Nyanza and Western provinces of Kenya and to educate rural communities as well as primary health care providers about signs and symptoms of the disease in order to encourage patients to seek early treatment. This will ensure that health care providers are both familiar with manifestations of the disease and know where to refer patients. In addition, we hope to identify any tendency for the disease to cluster in particular districts and to identify, through a questionnaire, potential risk factors for the disease. This report describes progress made since the project began in April 2007.

Contributors to My Child Matters program, Kenya.

Activities and results to date

Case recruitment & community education

A total of 156 cases, comprising 81 patients with BL and 75 controls, have, as at the time of this report, been registered on-study. They come from 17 districts in Nyanza and 8 districts in Western Province. Education about the clinical characteristics of the disease has been undertaken by the project team in 75 case neighborhoods in 25 districts in Nyanza and Western provinces. In each of the neighborhoods, selected because of a prior referral of a child with Burkitt lymphoma, 5 to 40 participants have attended the educational sessions. These sessions have been accompanied by pre- and post-assessment of KAP. In this respect, training on data collection for 16 community health workers (CHWs) in Migori District was followed by baseline (pre-education) KAP assessment through the administration of 768 questionnaires in a population of about 335,252 in the last week of November 2008 in five administrative divisions. Similar training was provided to an additional 16 CHWs from Siaya and Bunyala Districts followed also in late November by baseline KAP assessment through the administration of 720 questionnaires to 180,797 people spread in 12 locations.

Workshops & educational talks

Education targeting health-workers in Nyanza and Western provinces and aimed at heightening awareness on the need for early detection and treatment of BL has been carried out through workshops and sensitization visits to health facilities. A workshop held in Kisumu on 1st April 2007 was facilitated by the project team and attended by 16 participants from Nyanza and nine from Western Province. A second workshop was held on 4th April, 2008 and attended by 15 participants from Nyanza and 10 from Western Province. Participants for both workshops were invited on the basis of their official positions in the health care service, which is expected to further the objectives of the project.

Educational (sensitization) talks on project activities and distribution of educational materials to health-care workers at their facilities is ongoing and has covered over 64 health facilities to date. This has resulted in heightened awareness among a core group of about 525 health workers of various cadres, including clinicians spread across the study site. With sustained BL awareness, an increasing number of communities is being reached and will eventually be well informed.

A continuing medical education (CME) talk organized in conjunction with Kenya Medical Association (KMA) in April 08 was attended by 50 doctors, including pediatricians, physicians, pharmacists, general practitioners and other professionals working in public and private health facilities in the region. A talk on BL for all heads of health care facilities in Migori District was held on 9th December, 2008 at Migori and was attended by 67 participants. This was followed by two other CMEs in Nyamira and Homabay District Hospitals (Photo) during the period 27th May, 2009 to 4th June, 2009 and which were attended by 270 health workers. Posters, pamphlets, information leaflets and guidelines for referral of suspected cases of BL were distributed to participants.

In order to maximize the impact of the workshops and other project-related activities, reporters from regional and national news media were invited to cover the events. This resulted in activity reports being featured on national and local radio as well as television and newsprint media.

Post-test data collection for KAP assessment is scheduled for the latter part of 2009 and early 2010 through the administration of 768 questionnaires in the intervention area (Migori District).

Epidemiological Findings

A largely even distribution of BL cases in 24 districts of Nyanza and Western Province has been observed, with some seeming clustered cases appearing in a few districts including Migori, Rachuonyo and Siaya, which make up 40% of all cases recruited so far. Of the cases registered, a 2:1 male-female ratio has been noted. The age range is 2.5 – 14.0 years with a mean age of 6.8 years. Both observations are consistent with published information. There were five ethnic groups among the patients; Luo comprised 71%, followed by Luhya at 19%. The average time between onset of symptoms and visit to first health facility was six days – an important point that suggests that delay is not predominantly related to seeking medical advice. However, the average time between the date of admission or out-patient visit to the treatment centre (NNPGH) was three weeks – a relatively long time period for a very rapidly growing tumor, but consistent with referral times for less aggressive cancers. Given the relatively small number of cases registered so far, referral patterns and trends either geographical or temporal, have not yet emerged.

Awareness training.

Challenges Encountered

A number of challenges were encountered in the course of the project, which led to modifications in size of the anticipated target population to which education was to have been provided. These included:

1. Funding was insufficient to cover the originally anticipated target populations and health care workers. Though initially planned to cover a sizable part of Nyanza and Western Provinces, the target population had to be limited to the BL “cluster” areas/districts (i.e., from where 6 – 12 patients have been seen). Efforts are being made to bridge the budget shortfall and allow expansion of the target population to that initially planned.
2. Due to the political unrest experienced in Kenya during the early part of 2008, project activities were delayed for two months because of the country-wide restriction on movement and the unfavorable working environment.
3. Accrual of cases over the last 12 months has been slow due to challenges encountered at New Nyanza Provincial General Hospital, where most cases are referred. This has led to a shift of case recruitment to hospitals in BL cluster-like areas identified from data collected so far.

The New Nyanza Provincial General Hospital.

Conclusion

Project oncologists are working closely with pediatricians and physicians in the field on the application of the INCTR BL treatment protocol, which is currently being used at Aga Khan Hospital, Kisumu. The project has applied for further funding from the National Council for Science and Technology to enable us to sustain ongoing project activities and also provide drugs for our cases at selected district hospitals.

The current investment made in creation of awareness on BL among communities and health care workers will take some time before clear dividends are realized. The project started on a promising note but encountered challenges on the way, some entirely beyond our control. In spite of this, we have been able to meet most of the goals and anticipate that by the end of 2009, we will be able to measure the impact of BL education by comparing cases reported prior to and over the study period. Data analysis of environmental/familial factors will be conducted in addition to changes in patient condition (clinical staging) variations at the time of admission over the study period.

Acknowledgements

We wish to thank UICC and sanofi-aventis for establishing the My Child Matters program and for the generous grant that has supported our activities to date. Our thanks also go to Dr. Ian Magrath of INCTR for his able mentorship of the project. Finally, we would like to acknowledge the enthusiasm and assistance provided by Dr. John Vulule, Director KEMRI – CVBCR Kisumu, among others, for their invaluable contribution to the project so far.

N.A. Othieno-Abinya, Aga Khan
University Hospital, Nairobi, Kenya