© Springer International Publishing Switzerland 2016
Michael Silbermann (ed.)Cancer Care in Countries and Societies in Transition10.1007/978-3-319-22912-6_1414. Cancer Care in Countries in Transition in Africa: The Case of Uganda
(1)
Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, 7072, Kampala, Uganda
(2)
Department of Pathology, Kampala Cancer Registry, School of Biomedical Sciences, College of Health Sciences, Makerere University, Kampala, Uganda
(3)
Department of Community Health and Behavioural Sciences, School of Public Health, College of Health Sciences, Makerere University, 7072, Kampala, Uganda
Keywords
UgandaEpidemiological transitionNon-communicable diseasesCancersDiabetesHospicePalliative careCancer registryCollaborationsCultureIntroduction
The concept of transition may apply to demographic and/or epidemiologic transition. The latter includes the multitude of usually sequential and complex changes in disease and health patterns in specific human populations and countries, usually over a long period of time. Such changes are intricately related with and manifest as social, economic, and demographic transformations within societies. The transition might take the form of a health system dominated by communicable diseases and poverty-related conditions including poor sanitation, lack of clean potable water, inadequate or unhealthy diet and nutrients intake, poor housing, and low education attainment to a health system predominated by chronic non-communicable diseases (NCDs) including cancers and degenerative illnesses [1]. Uganda is clearly undergoing an epidemiologic transition as the incidence of communicable diseases including tuberculosis and HIV are matched by an increasing incidence of noncommunicable diseases such as diabetes, hypertension, heart diseases, and cancers associated with infections and western lifestyles [2–11].
The countries in transition do not only face the double jeopardy of communicable diseases and noncommunicable diseases including infections-related cancers and cardiovascular diseases but also the fact that the cancers affect the younger productive age groups thus crippling the economic productivity, further leading to entrenchment of poverty in these communities [12–14]. What is needed to control the dual burden of communicable and noncommunicable diseases is an integrated primary care approach based on lessons learnt from long-term experiences with communicable diseases while taking advantage of the favorable global health policy environment [15]. The infrastructures and organizational arrangements used to combat communicable diseases need to be transformed into a more dynamic system to deal with the rocketing burden of noncommunicable diseases.
Uganda Country Profile: Location and Population
Uganda is located in East Africa between 1° 12′ South and 4° 12′ North Latitude, and 29° 34′ East and 35° 0′ East Longitude. It has an area of 241,038 km2 of which the land area covers 197,323 km2 [16]. Uganda population is projected to between 40.6 and 43.4 million people by 2017. The annual population growth rate is currently about 3.5 % per annum [16].
Uganda has a high total fertility rate (TFR) of 6.7 [17]. The life expectancy at birth is expected to increase from 50.5 for females and 45.7 for males in 1991 to 54 and 53, respectively, in 2017. The population of the older persons in Uganda (those aged >60 years) is projected to increase from an estimated 1.29 million in 2007 to approximately 1.83 million in 2017 [16]. More cancer diagnoses are therefore expected in Uganda in the near future because the older populations are at greater risk of developing cancers. Worldwide, about 45 % of all the new cancer diagnoses in 2002 were among people aged >65 years [18].
Current Status of Cancer Care in Uganda
This section will include a brief review of the incidence and burden of cancer and the resources and facilities available for cancer care in Uganda.
Incidence and Burden of Cancer
The incidences of cancers have steadily increased worldwide. There is disproportionately marked increases in the low- and middle-income countries (LMICs). In 2002, the number of new cancer diagnoses was estimated at 12.4 million worldwide. About 5.1 million of the new cases of cancer were in developed countries and 5.8 million new cases in developing countries. An estimated 530,000 of the new cases of cancer occurred in sub-Saharan Africa [19]. In 2008, about 12.7 million new cancer cases occurred worldwide; 56 % were in the less developed regions of the world [20]. The rising trend in cancer incidence is expected to continue with the least developed countries being disproportionately affected [21]. In the recent 20 years, data from the Kampala Cancer Registry (KCR) in Uganda show an overall increase in the risk of cancers in both women and men. Greatest increases in risk were noted for prostate (5.2 % annually) and breast (3.7 % annually) cancers [9].
Facilities for Cancer Research and Care
Until the last decade, there was only one established center of excellence for cancer care, training, and research—the Uganda Cancer Institute (UCI) built in 1967 as a center for research and treatment for Burkitt’s lymphoma. The UCI provides chemotherapy for cancer patients referred from all over the country [22]. However, with the increasing cancer incidence and burden on the population, two missionary not-for-profit private hospitals, St. Mary’s Hospital Lacor and St. Francis Hospital, Nsambya, started to increase their scope of cancer care. In 2010, St. Francis hospital, Nsambya, started providing cancer care services majorly for gynecological malignancies including choriocarcinoma, cervical cancer, and breast cancer. Nsambya Hospital has worked with an Italian nongovernmental organization AISPO and in support with a local catholic bank, Centenary Rural Development Bank, to finance and construct a state-of-the-art center for cancer care. The rotary club of Kampala has contributed in raising funds for the construction of this cancer center through cancer runs campaigns. Both UCI and Nsambya hospitals are located in the capital city, Kampala. Located in the north of the country, St. Mary’s Hospital Lacor has collaborated with the International Network for Cancer Treatment and Research (INCTR) to improve its status in the management of Burkitt’s lymphoma. It is expected that the cancer treatment center will now grow to provide sustainable quality cancer care for the population of northern Uganda. The center is expected to enhance its surgical oncology services in addition to chemotherapy for childhood Burkitt’s lymphoma.
There are two national and 15 regional referral hospitals in Uganda. Most of these referral hospitals have resident general surgeons and gynecologists who do some aspects of cancer care including biopsy for diagnosis and operative management of surgical and gynecologic malignancies including colorectal, ovarian, cervical, and breast cancers. These services are provided by general surgeons. There are hardly any specialist oncology surgeons, e.g., breast surgeons in Uganda.
There is currently only one functional radiotherapy machine (Cobalt-60) in Uganda located in Mulago National Referral Hospital in Kampala [23]. This center is often overcrowded with advanced stage cancer patients, and the machine frequently breaks down leading to long waiting time for patients to complete their radiotherapy sessions. Lacor Hospital had ever provided radiotherapy services for cancers, but this stopped during the mid-1990s as the civil conflict that engulfed northern Uganda for more 26 years since 1987 escalated.
In terms of cancer intelligence and registration, there is only one active population-based cancer registry, the Kampala Cancer Registry (KCR) that documents incidences and monitor trends in cancer rates and mortality [24]. The KCR provides relevant cancer statistics used for projection of cancer incidences and cancer planning in Uganda. It is one of the oldest cancer registries in sub-Saharan Africa, and it has been accredited by the International Agency for Research in Cancer (IARC) for providing quality data [24]. Recently, a new population-based cancer registry has been set up in St. Mary’s hospital, Lacor in collaboration with the INCTR. This registry is expected to serve a population of about 664,000 from Aswa, Kilak, Omoro, and Nwoya counties in northern Uganda.
Hospice Africa Uganda (HAU) has been active in management of pain among cancer and HIV/AIDS patients since 1993. The head office for hospice is in Kampala but has branches in Mbarara and Hoima. The principles of operations of hospice include use of community volunteers, hospital-based care, and community outreaches [25]. Home-based care predominates hospice approaches because local researches among terminally ill patients in Uganda revealed that patients and their families prefer to be cared for and die at their homes in the company of their loved ones [26]. In order to increase availability of quality hospice care in the country, Hospice developed training programs for nurses, medical clinical officers, and medical officers in pain management principles and use of oral morphine for the management of cancer pain. Hospice provides scheduled short-term and long-term courses for various cadres of health workers. Since 1998, hospice has worked with the various health training institutions to incorporate hospice care and principles of pain assessment and management into many curricula in Uganda [25]. Hospice has contributed to the realization of pain control and palliative care for terminally ill patients in Uganda. To achieve its broader and long-term goals, hospice has fostered collaboration with the Uganda Ministry of Health to legalize the prescription of oral morphine by lower cadres of healthcare professionals including nurses and clinical officers who have received additional training from hospice. In addition, palliative care has also been included among the essential clinical services in the Uganda national health policy and the health sector strategic and investment plan [27].
Human Resources for Cancer Care
Currently, there are about seven oncology physicians and one oncology pediatrician directly involved in clinical care for cancer patients in Uganda. There are a handful of experienced gynecologic and surgical oncologists based in Mulago National Referral Hospital in Kampala. A limited number of other general surgeons and gynecologists in the regional referral hospitals have keen interest in and often contribute to surgical management of common malignancies including colorectal, breast, and cervical cancers. The radiotherapy unit in Mulago Hospital is run by four radiation oncologists.
In addition to these available human resources engaged in clinical oncology, there are visiting oncologists from collaborating institutions in the developed countries including Fred Hutchinson Cancer Research Center (FHCRC) in the US and Regina-Helena hospital, Italy. Clearly, this limited number of specialists is inadequate to meet the demand for timely diagnosis and prompt treatment for the common cancers in Uganda. Uganda and many other LMICs need to invest more in capacity development including in-service training and retaining oncology specialists in order to improve cancer care and reduce morbidity and mortality from cancers.
International Collaborations in Cancer Care
Decades of collaborations geared towards planning for cancer control, strengthening researches, improving quality of clinical care, building capacity of local physicians, and improving institutional capacity to deliver holistic high quality cancer care have existed between international institutions and cancer centers in Uganda. These collaborations started way back in the 1960s when the National Cancer Institute, USA, together with Mulago Hospital and Makerere University mutually agreed to build a cancer treatment, research, and training center known as Uganda Cancer Institute [22, 28]. This early collaboration was aimed at the development of treatment and research on a common childhood tumor, Burkitt’s lymphoma, and later research into liver and esophageal cancers. Recent collaborations include the Fred Hutchinson Cancer Research Center and University of Washington in the USA with the Uganda Cancer Institute, the Case Western Reserve University and the UCI, Italian AISPO with St. Francis Hospital Nsambya, and International Network for Cancer Treatment and Research with St. Mary’s Hospital Lacor [29, 30]. These collaborations have emphasized different aspects of cancer control as follows:
1.
The FHCRC/University of Washington and UCI has been involved in training of oncology specialists in their center of excellence in the USA in both clinical oncology and research, and carrying out multitude of formative and clinical researches in the fields of infections-related cancers especially herpes virus- and HIV-related malignancies [29].
2.
AISPO/Nsambya Hospital collaborations set up one of the first facility-based cervical and breast cancer-screening centers in Uganda as well as providing outreaches for cervical screening. This collaboration has also led to the establishment of chemotherapy center in Nsambya Hospital specializing in cervical, breast, and choriocarcinoma treatment/management.
3.
INCTR/Lacor Hospital collaboration has concentrated on research and treatment of childhood Burkitt’s lymphoma mainly in northern Uganda. In addition, Lacor has been involved in the Epidemiology of Burkitt’s Lymphoma in East African Children and Minors (EMBLEM) research collaborations between the US NCI and Uganda, Kenya, and Tanzania geared towards improving the management of children with Burkitt’s lymphoma [29].
4.
INCTR and the African Cancer Registry Network (AFCRN) in collaboration with Lacor Hospital and the Kampala Cancer Registry have established a new population-based cancer registry in Gulu, northern Uganda. The objective is to generate quality data from two population-based registries on exposures associated with specific cancers, incidence, mortality, stage distribution, treatment patterns, and outcome to inform planning and guide government and policy interventions relevant for cancer control [31].
Diagnostic Capacity and Accuracy
The histopathology laboratory at the department of pathology, Makerere University College of Health Sciences (medical school) has provided morphological diagnoses of cancers since the 1930s [28]. More recent histopathology laboratories have been established including in the pathology department of Mbarara University of Science and Technology, St. Francis Hospital Nsambya, Rubaga Hospital, Mengo Hospital, and St. Mary’s Hospital Lacor. In addition, several private histopathology laboratories have emerged in the capital city, Kampala, over the last decade and have contributed to prompt tumor histology diagnoses. However, only a limited number of these histopathology laboratories provide immunohistochemistry studies to further characterize tumors and improve morphologic descriptions.
Recent studies have shown that morphologic descriptions are not adequate to accurately characterize tumors. In addition, morphological diagnoses require invasive approaches to obtain bigger chunks of tissues while in flow cytometry, small tissues samples suffice [32]. To minimize the rates of false positivity and negativity findings, it is important to do additional tests to determine cell surface receptors and characteristics with adjuvant tests including DNA-image-cytometry (DNA-ICM), immunocytochemistry, and Polymerase Chain Reaction (PCR) [33–35].
These adjuvant tests can be used in combination or solely to accurately diagnose cancers. In a recent review to assess accuracy and quality of pathological diagnoses in Uganda, review of tissue samples were done in external laboratories that used these adjuvant tests to augment their diagnostic capabilities. In one such case, an external international laboratory review of histopathology blocks locally diagnosed as Burkitt’s lymphoma in the histopathology laboratory in Lacor Hospital showed that there were inconsistent applications of laboratory procedures and suboptimal tissue fixation and staining. The agreement between the local laboratory and external laboratory for tissues that were adequately fixed was about 82 % [36]. Similarly, an international histopathology laboratory in the Netherlands reviewed tissue blocks diagnosed as Non-Hodgkin’s lymphoma (NHL) by the Makerere University histopathology department. The agreement between the two laboratories was 36 % (95 % CI 28–46; kappa 0.11; P = 0.046) [37]. In both the Lacor and Makerere University histopathology laboratories studies, there were a substantial minority of patients assigned lymphoma diagnoses when they actually did not have lymphoma nor have any cancers at all [36, 37]. This illustrates the limitations of using only haematoxylin & Eosin (H&E) for morphologic diagnosis of various cancer types [38, 39]. Ancillary diagnostic tests including immunohistochemistry tests are therefore urgently needed to improve the quality of cancer diagnoses in Uganda.
Cancer Stage at Diagnoses
In Uganda, the majority of cancer patients are diagnosed with advanced stage cancers and experience poor survival [40–42]. Patients in advanced stage III/IV have higher risk of death than those in early stage of cancers [40, 43]. Even for potentially curable cancers such as Burkitt’s lymphoma, diagnoses are often made after substantial delays. Most of the delays reported by caretakers of patients with BL in Uganda were attributed to the patient interval [44]. Kaposi sarcoma diagnoses were also made when the cancers were in advanced stage despite the fact that most of the patients included in that study were under regular care by clinicians providing HIV/AIDS care in Kampala [45]. Factors that lead to advanced stage of cancer at diagnoses include long patients and diagnostic intervals [46, 47]. And factors that influence these intervals vary depending on the sociocultural and/or geopolitical circumstances affecting people’s beliefs and barriers to medical health seeking. In northern Uganda, women with cervical cancer inappropriately attributed their symptoms to other illnesses including sexually transmitted diseases and engaged in home-based management of these illnesses. While the majority of the women with cervical cancer did not perceive personal risk for cancer, they reported that they would have sought care early if they knew their symptoms were due to cancer [48].