This study is the first report of HRQOL and needs of care and support of Tanzanians with cancer. A mixed-methods design including quantitative and qualitative research methodology was used. For this purpose the, by our group, newly developed Kiswahili version of the well established EORTC QLQ-C30 was used. The participants, women and men reported a low level of social, role, and physical function and overall health status and quality of life. In spite of this they reported a relatively high level of emotional function. They reported a high level of symptoms, especially pain but also fatigue and insomnia. Financial difficulties were reported to a remarkably high extent by both women and men. The patients reported a number of needs such as need of food and water, hygienic needs, emotional needs, spiritual needs, financial needs, and needs of closeness to cancer care and treatment services. The experiences described in the focus group interviews correspond well with the results obtained with the EORTC QLQ-C30. Furthermore, the needs that were reported in the group interviews are in line with patients’ needs of support described by informal and professional carers in sub-Saharan Africa. Almost no data regarding quality of life exist from Tanzania and comparing the results to other populations is uncertain. Two publications reporting on results using the EORTC QLQ-C30 among cancer patients have been performed for Sub-Saharan Africa. One of these report on a study performed at Kenyatta Hospital in Kenya in which the HRQOL of women with inoperable cervical cancer receiving radiotherapy was investigated. No mean values for scales were presented but the authors conclude that disruption was detected in most domains. A Nigerian study investigating women receiving radiotherapy for breast cancer assessed quality of life with the EORTC QLQ-C30 and reported results in line with the findings presented in this study. The Nigerian study reported higher scores for emotional function and lower scores for role and social function, the highest symptom scores were shown for fatigue, pain, and financial difficulties. Selman et al. investigated HRQOL among patients in palliative care in South Africa and Uganda using the Missoula Vitas Quality of Life Index. It was concluded that patients with cancer reported a better HRQOL compared to patients infected with HIV and that the study sample reported poorer HRQOL compared to similar populations in the US.
Comparing the results from this study to findings from a context in high income countries is challenging as the resources, the care as well as the socio demographic situation differs. Having this in mind, a visual inspection of the results of this study and those from a study on cancer patients in terminal care in Sweden shows that the sample in this study reports a higher function in some respects whereas more pain and remarkably more financial difficulties than the Swedish sample.
Satisfactory convergent validity values were revealed for all scales but cognitive function and one item in the fatigue scale, however convergent validity values were also less than satisfactory for the pain and global health/quality of life subscales. Acceptable Cronbach alpha values were revealed for all but three scales: cognitive function, global health/quality of life, and pain. Looking closer to the two items measuring cognitive function one of them assesses the ability to concentrate by reading magazines and watching television. This item appears inappropriate for Tanzanian cancer patients as some are illiterate and inappropriate for the participants in this study as they did not have access to watching television at ORCI. The translation procedure included interviews with 49 patients regarding reactions and thoughts regarding each item in the EORTC QLQ-C30. This particular item revealed difficulties understanding the word “concentrate” but only one patient remarked on the lack of resources to be able to buy magazines. It may be so that the difficulty understanding the word “concentrate” drew attention from the rest of the content in the item. The cognitive function scale showed remarkably weak internal consistency and is recommended to undergo further cultural adaptation. Issues related to culturally dependent activities have been described as potential problems when translating from European to non-European languages. Regarding the global health/quality of life scale, the concepts quality of life and HRQOL are not used in the same way in the East African context and Kiswahili language as in the western world and languages. This scale is also recommended to undergo continued evaluation to fit with the Tanzanian context. The reason for the sub-optimal convergent validity of the pain scale may reflect a cultural difference in expression of pain. Still, the high level of self-reported pain underscores the importance of the scale and the need to assess pain, also highlighted in the focus group interviews.
Approximately 30% of the participants were treated with chemotherapy, whereas approximately 70% with radiotherapy. These treatments are associated with a number of complications including nausea and vomiting, diarrhoea, loss of appetite and weight, fatigue, sleep disturbances, pain, and emotional distress. An advanced disease stage is probably the factor having the greatest impact on the low levels of function and high level of symptoms revealed in this study. Unfortunately the study procedure did not include an evaluation of disease stage. Previous findings from a study investigating referral delay from the rural sector and its influence on the management of patients admitted at ORCI show that of fifty-nine participants 88% were in stage two to four of the disease and approximately 50% in stage three to four.
The high score for pain points out that ORCI is facing severe challenges regarding pain management. Pain management does not require extensive resources and is one of the issues on the agenda of the comprehensive approach to cancer control guided by WHO. Supporting previous research the findings of this study underscore the importance of relieving patients from cancer-related pain. Oral morphine, reconstituted from powder is available at ORCI, however, to what extent is uncertain. One may expect that availability differs over time. Looking at the rest of East Africa Uganda stands out as a good example with regard to supportive care, being the first country in Africa to provide palliative care for people with HIV and cancer, a priority in its National Health Plan for 2001 to 2005.
The participants reported financial difficulties to a high extent with the EORTC QLQ-C30 and in the focus-group interviews. Tanzania is one of the poorest countries in the world. The participants came from economically very poor groups such as peasants, small scale business people, low level cadre employees, and non-employed. The cancer disease caused extra costs e.g. for transports, medicines, food, and water. Some had to travel very far to reach ORCI and due to treatment but also lack of money had to spend months even a year at the hospital which in turn caused feelings of loneliness, insecurity, and isolation. In spite of reporting a relatively high emotional function with the EORTC QLQ-C30 participants expressed a need of emotional care in the focus-group interviews. The findings indicate that the patients at ORCI, as shown for cancer patients in many contexts e.g. in Bahrain, would benefit emotionally if visited by relatives or support groups. Also in low income countries governments are responsible for the wellbeing of their citizens. Unfortunately, often they don’t have at their disposal the necessary resources to provide the required psychosocial care for somatic patients.
A reliance on both traditional and allopathic medical systems often results in late presentation. There are only three hospitals in Tanzania where cancer can be diagnosed, and patients from all over the country have to travel to ORCI in Dar es Salaam for cancer treatment. Biopsies are sometimes taken at another centre and it can take up to six months to get a result from these. The capacity to examine biopsies is around 2,000 specimens per year, but over 10,000 samples are received. Specimens sent to Europe are often diagnosed in three weeks. A biopsy can be ‘fast tracked’ at ORCI within two weeks but costs the equivalent of US$ 25 which many patients are unable to afford.
Several aspects for which a need was mentioned in the focus group interviews are not included in the EORTC QLQ-C30 such as food, water, and hygiene. Both men and women expressed a need for food and water. During the study period patients at ORCI were provided with food for free. However patients expressed special needs due to their disease and subsequent treatment which were not met. Water was not provided for free and patients expressed a need of bottled water. Patients had access to tap water which is not safe for drinking unless boiled.
Relatively few men participated in this research and a visual inspection of the EORTC QLQ-C30 data does not reveal any considerable differences between women and men. However, women reported a somewhat better HRQOL than men, a different pattern from that found in western countries where women tend to report more distress than men. This illustrates a potential cultural difference of interest to illuminate in future research. When considering the findings of this research it should be considered that the sample is relatively small, probably biased towards inclusion of persons willing to share their concerns and in stage two or more of the disease which could hamper the representativeness of the findings. In spite of this we consider the findings as representative for the patient population seen at ORCI at the time of our study. The fact that almost all cancer patients in Tanzania receiving treatment for their cancer disease are seen at ORCI supports the possibility to generalize the findings to the population of Tanzanian cancer patients.
In Tanzania the government, parastatal organizations, voluntary organizations, religious organizations, private practitioners, and traditional medicine provide health services. The Government’s referral system has a pyramidal approach starting from dispensary to hospitals. Most often a cancer diagnosis relies on simple and cost effective technology, however cancer care and treatment is dependent on trained and skilled health care workers, not available at the lower level health facilities. The findings from the focus-group interviews show that patients had visited the lower level facilities without being properly diagnosed.