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Characterizing cancer burden and quality of care at two palliative care clinics in Malawi

Victoria Mukhula1, Daisy Sibale1, Lubna Tarmahomed1, Charles Dzamalala1,2, Kelias Msyamboza1,3, Steady Chasimpha2


1. College of Medicine, Blantyre, Malawi

2. Malawi Cancer Registry, Queen Elizabeth Hospital, Blantyre, Malawi

3. World Health Organization, Malawi Country Office

Correspondence: Miss Lubna Tarmahomed (lubna-tarmahomed@hotmail.com)


                                                                                              Abstract

Background

Despite availability, palliative care remains inaccessible to many. This paper describes cancer burden comparing characteristics of cancer patients enrolled in two palliative care facilities of varying resources and geographical locations in Malawi and assesses the extent of differences in service delivery and the impact it might have on cancer outcomes.

Methods

Data on all cancer patients registered between October 2010 and October 2015 at Tiyanjane and Mzuzu Central Hospital Palliative clinics were extracted and analysed. Key informant in-depth interviews were done from both sites. Thematic analysis was used for qualitative data and Excel 2010 and STATA 12 software packages were used for analysis of quantitative data.

Results

Quantitative- There were 1362 and 633 cancer patients at Tiyanjane and MCH palliative care facilities respectively. Overall, females dominated over males (55.8% vs 42.8%) However, Tiyanjane had more males than females (52.2% vs 45.8%) contrary to Mzuzu-77.4% females vs 22.6% males. The 35-54 age group was dominant both at Tiyanjane (43.1%) and Mzuzu (40.1%).Overall, the most common cancers were: Kaposi sarcoma (26.9%), cervical cancer (26.8%), oesophageal cancer (14.2%), hepatocellular carcinoma (4.9%) and bladder cancer (3.0%).Tiyanjane had 13% histologically confirmed diagnoses whereas Mzuzu was clinical.

Qualitative- Palliative care services are offered free of charge at both facilities and due to expansion of palliative care services to district hospital, the workload at central hospitals has been reduced. There is variability in the follow up systems, types of drugs available as well as quantity and training of human resource with Mzuzu palliative care facility facing serious challenges with respect to that compared to Tiyanjane.

Conclusions

The characteristics of patients seen at each clinic varied in accordance to the services available. Quality of care was seen to be better at Tiyanjane than Mzuzu proving that involvement of other stakeholders in delivery of palliative care is crucial.


Introduction

Cancer is a leading cause of mortality and morbidity worldwide. However, the cancer burden is disproportionately higher in developing countries.1 In Africa alone, the burden is anticipated to double to 1.3 million new cases and 970,000 deaths by 2030.2 This increase is largely driven by the aging population, population and economic growth, and adoption of Western risk factors such as smoking, alcohol, obesity and diet.3 The problem is further compounded by late presentation in most sub-Sahara Africa settings including Malawi. Most cancers are diagnosed at advanced stage, thus, not amenable to treatment and result in poor prognosis. Most patients end up referred for palliation. However, palliative care services remain inaccessible in much of Africa.

WHO defines palliative care as an approach that improves quality of lives of patients and their families facing the problem associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Evidence has shown that palliative care is beneficial in improving the quality of life of cancer patients as well as improving the treatment outcomes and survival.4 In Malawi efforts have been made to make this crucial service available and accessible to those who need it. By 2010, twenty-five sites were providing palliative care services throughout Malawi including Tiyanjane and Mzuzu palliative clinics. These sites included both government and private organizations.

Tiyanjane clinic is an adult palliative care clinic established in the year 2003 at Queen Elizabeth Central Hospital (QECH), the largest government tertiary facility in southern Malawi. It is supported by Palliative Care Support Trust (PCST), a charitable trust, and Malawi government. The clinic is situated within the hospital and provides service to in-patients referred from different departments as well as running an out-patient from surrounding communities. The clinic team comprise of three clinicians, three nurses, one HIV counselor and two support staff. There is a weekly KS clinic including chemotherapy for the KS patients which brings in a lot of patients from within the southern region.

On the other hand, Mzuzu Central Hospital (MCH) palliative care clinic is a fully government run palliative care facility located within Mzuzu Central Hospital, the only tertiary facility in northern Malawi, established in 2007. The clinic provides paediatric and adult services to both out-patients and in-patients on daily basis and is run by one nurse who may sometimes get assistance from clinical officers who have had training in palliative care. There are no special services offered like in Tiyanjane, rather they see all patients that fall under palliation.

This paper compares characteristics of cancer patients registered at Tiyanjane and MCH palliative care clinics and explores the extent of differences in palliative care services delivery between the two clinics. It will serve as a platform to enable different centres to learn from each other to allow for quality improvement in patient care and may serve as a baseline for future studies on cancer and palliative care in Malawi.

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Methods

Study type and population

This was a mixed methods study. Data on all cancer patients registered both at Tiyanjane and Mzuzu Central Hospital palliative care clinics between October 2010 and September 2015 were extracted using the Malawi Cancer Registry Notification form which includes information on; (a) Demographic variables; age, sex, place of residence and marital status. (b) Clinical data; date of diagnosis, method of diagnosis, cancer stage at diagnosis, HIV and ART status. (c) Follow up details; Present living status, last seen date for the participants who were still alive or lost to follow-up and date of death for the participants who were dead.

Inclusion and exclusion criteria

The inclusion criteria incorporated incident cancer cases within the defined period, patients aged 15 and above, of both sexes, who were attending either of the palliative clinics. Cases with missing data on diagnosis and cancer incident date and those attending palliative care for diagnoses that were non-cancer related were excluded as well as those that didn’t meet the inclusion criteria as stated above.

Statistical analysis

Descriptive analyses were performed in MS Excel and STATA. Three key informant interviews were conducted with team leaders and at least one health care worker with a minimum of 2 years working experience at the respective clinics. Seeing as Mzuzu palliative care clinic was run by a single nurse, she was interviewed as team leader as well as health worker. Thematic analysis was used for qualitative data.

Ethical considerations

Ethics approval to conduct the study was obtained from the University Of Malawi College Of Medicine Research Ethics Committee and permission was obtained from the directors of each palliative care facility. Identification numbers instead of names were used for all data obtained, and raw data was solely available to researchers.

Results

Quantitative

There were 2362 cancer patients registered between October 2010 and October 2015 at the two clinics (Tiyanjane = 1510 and Mzuzu = 852). Of these, 148 cases at Tiyanjane and 219 cases at Mzuzu were excluded from analysis as they did not meet the inclusion criteria.

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Table 1 shows the demographic characteristics of cancer patients registered at both palliative care facilities. At Tiyanjane clinic there were 711 (52.2%) males and 624 (45.8%) females. The median age at enrollment was 41years (ranged 15- 98) with the age group 35 -54 years the most dominant (43.09%). In relation to HIV status 51.3% were positive, 30.4% were negative and 18.4% had an unknown status. The most common cancers were Kaposi sarcoma (37.4%); oesophageal cancer (16.4%); cervical cancer (14.8%); hepatocellular carcinoma (6.1%) and bladder cancer (3.4%) (Table 2). Histologically confirmed diagnoses were 13% of total cases (Figure 1).

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Mzuzu palliative care clinic had 143 (22.6%) males and 490 (77.4%) females. Median age at enrollment was 52 years (Range 15-94) with predominance in age group 35-54 years (40.1%). 20.4% of patients were HIV positive against 49.8% HIV negatives and 29.9 % with unknown status (Table 1).The most common cancers at Mzuzu clinic included cervical cancer (52.5%); oesophageal cancer (9.5%) and Kaposi’s sarcoma (4.4%) (Table 2). There was missing data on how the cancer diagnosis was attained (clinically, histologically, surgically or using other methods) for 99% of the cases (Figure 1).

Qualitative

Services from both centers are freely accessible and there has been a decrease in the number of outpatients due to expansion of palliative care services to surrounding districts. There is no documented follow-up system at Mzuzu as they do not have the funding for implementation of initiatives such as home visits which happens twice a week at Tiyanjane. However, it takes personal initiatives to conduct home visits in Mzuzu. “We visit the patients that live close to our locations or ask fellow health workers who live close to them to check on them and report on their condition after which they are assisted through the health workers” the palliative care nurse explained. The quality of life of patients referred to district hospitals for palliative care is usually unknown as there are no systems for such in place in both facilities. Tiyanjane has community volunteers who maintain constant communication with the facility on the patient’s progress whilst Mzuzu has none due to the constant financial constraints.

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There is a wide range of drugs used at Tiyanjane than Mzuzu palliative care facility. In cases of drugs stock out at the main pharmacy, PCST supplements medications at Tiyanjane whilst guardians are requested to buy at Mzuzu. In cases of those who can’t afford buying the drugs, they are taught local remedies. “We never really went in class to learn some of these local remedies but these are based on personal knowledge. I feel like this is better than just leaving them to go with a symptom unattended to” a health worker from Mzuzu explained.

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Discussion

The findings suggest a young age at enrollment into palliative care clinic and predominance of AIDS defining cancers especially Kaposi sarcoma. The median age at enrollment at Mzuzu palliative clinic was higher than that of Tiyanjane (52 years vs 42 years). The number of female cases was higher than the males. This is possibly due to high incidence of cervical cancer in the region and an upscale in the screening program.

Malawi has an estimated adult HIV prevalence of 10.6%(15-64 age group).5 Among males at Tiyanjane clinic, Kaposi sarcoma (KS) was the most common cancer followed by cancer of the oesophagus and hepatocellular carcinoma (Table 3a). An almost similar trend was observed in Mzuzu. KS is more common among men as they usually learn their HIV status late and present to health care facilities with advanced disease including KS. However, KS was less common at Mzuzu clinic possibly because the majority of patients seen were female as compared to Tiyanjane and the high numbers of KS at Tiyanjane could also be explained by their provision of chemotherapy at their KS clinic (which is not available at Mzuzu) thus would bring in a large number of patients from within the region.

Despite immense effort put into awareness and screening cervical cancer remains most common cancer among women in the country. In female patients seen at both palliative clinics, cervical cancer was most abundant, however, this is not surprising given Malawi has one of the highest age-standardized incidence rate of cervical cancer, estimated at 33.6 per 100,000 population.6 Of the total number of cervical cancer cases seen in both centers, Mzuzu saw a higher number than Tiyanjane (62.2% vs 37.8% respectively). Upon comparison of cervical cancer cases seen at each center in proportion to the total sample size, Mzuzu still saw more cases; 16.6% vs 10.1% at Tiyanjane. It is still unclear why there were more cases seen in the North as compared to the south.

Overall, the continuous high numbers of cervical cancer patients seen may be due to an increase in the number of women presenting to health facilities for screening thus contributing to an increase in the number of diagnoses made (early rather than late). However, a study done by Munthali et al in 2015 showed that despite the success of screening programs, there are still a large number of females that aren’t presenting to health facilities to be screened and some of the barriers include; inadequate knowledge , lack of involvement of husbands, long distances to health facilities, Male providers for services, shortage of equipment and staff, as well as screening not being done on a daily basis in some centres.7,8 Other reasons for the high numbers of cases could include late screening, negligence, use of communication channels which might not be accessible to everyone and transmission of wrong messages by putting more emphasis on recommending HIV infected women and older women for early screening which the study has shown otherwise.

More than half of the patients at Tiyanjane were HIV positive (51.3%) compared to 20.4% at Mzuzu. This might be explained by the higher prevalence of HIV in the southern region of Malawi as compared to the North.9 However, it could also be explained by the higher number of KS cases seen at Tiyanjane (as mentioned previously) most of whom were HIV positive- of the total cases seen at each respective clinic, 96.3% and 75.0% were HIV positive at Tiyanjane and Mzuzu respectively. Due to increased access to ART, incidence of AIDS defining cancers seems to be decreasing. For example, the number of NHL cases was unusually low and more cervical cancer patients were HIV negative .Tiyanjane integrated HIV testing and counselling in their services hence there were few patients with unknown HIV status compared to Mzuzu (18.4% Vs 29.8%).

This study shows male gender predominance and young age at diagnosis for oesophageal cancer and hepatocellular carcinoma. High prevalence of oesophageal cancer amongst the young population is contrary to the theory that its occurrence in this age group is rare.10 The increase in incidence of this cancer could be due to genetic factors as well as shared environmental risk factors such as socioeconomic status which was shown in a study at Tenweck Hospital, Kenya.11 The hepatocellular carcinoma trends are consistent with other studies. An increasing trend in excessive alcohol consumption amongst men might be a reason for such high occurrences as estimated one in four men drink excessively in the country.12 This predisposes them to liver cirrhosis in addition to other factors such as dietary aflatoxins, chronic hepatitis B and/or hepatitis C viral infection.13,14

Other cancers common among women were Kaposi sarcoma, cancer of the oesophagus and cancer of the breast which is consistent with other studies done in the country.6,15 A much lower proportion of cancers of the large bowel (anus, rectum and colon) was observed. This is not surprising as these cancers are not predominant in our setting as seen in the study done Msyamboza et al in 2010 which showed 1.6% cases of rectal, anal, intestinal and stomach cancer combined.6

Despite histology being a gold standard for diagnosing cancer, only 13.8% of the cases at Tiyanjane had histologically confirmed diagnoses whereas in Mzuzu, diagnoses were solely clinical. Other studies done in Malawi showed similar trends where laboratory verified diagnoses were low (mostly < 20%) and some of the factors contributing to this were thought to be; inadequate laboratory capacity, and long waiting time to get histology results.15,16

Partnerships with other stakeholders seem to help with better delivery of palliative care services as is seen in the case of Tiyanjane clinic. The expansion of palliative care services to district hospitals has improved access to these services outside central hospitals and reduced workload for the clinics at central hospitals as evidenced by the reduction in the number of out-patients who attend clinics. However, referral systems between palliative care facilities need to be strengthened. Communities have to be involved in taking care of palliative care patients as there is evidence that much of the day-to-day care and building of relationships between patients, the palliative care team, and the community is done by volunteers(usually community members who are the backbone of the care team, part of their effectiveness being their closeness to the community they work in [17].The responsibilities of the community based volunteers should not be undermined since they provide home based care which is crucial in identifying critically ill patients as well as provision of on-going social support and end of life care. There is clearly quite a large need for a system like this in Mzuzu as evidence by the success of it at Tiyanjane. This would allow for more improved patient care and better follow up for the patients at minimal costs.

It has been made evident that there is need for an increase in the number of staff trained in palliative care at hospitals and health centers especially in remote areas and the likes of Mzuzu palliative clinic as it is overwhelming for a single person to be solely responsible to run a clinic and doesn’t allow for the patient to receive adequate holistic care which is said to have a profound effect on the quality of life for patients hence cannot be overlooked.

Palliative care has been shown to play a critical role in the management of chronic conditions, including HIV and AIDS, even in places where ARVs are available. A study done at Tiyanjane emphasized that palliative care may still be required for patients with HIV who are taking ARVs, especially for those who have treatment related side effects, poor adherence or HIV related malignancies.18 In light of this, MCH can expand its palliative care services to the patients seen at the oncology unit who are on chemotherapy for Kaposi Sarcoma and other cancers, allowing a holistic approach to their conditions.

Limitations of the study included time limit which only enabled study of two facilities and hence results cannot be generalized. Missing data on stage of disease, mode of diagnosis and ART status made it difficult to establish the prognostic significance of these variables.

There is a need to strengthen referral systems between palliative care facilities and involve more stakeholders to allow maximization of patient care. In addition, focus should be put on other risk factors of cancer other than HIV. Therefore, more studies exploring risk factors for different cancers can be helpful. There is need for an upscale on the use and numbers of histopathology laboratories located within the country.

Conclusions

The palliative care facilities studied varied greatly in resources and differed massively in geographical locations. The characteristics of cancer patients enrolled in terms of disease was affected by the various services that the two facilities provided respectively. There is a great need for palliative care and there has been increased awareness amongst the communities about it over the years however, it still remains inaccessible to many. The study makes it evident that there is a large need for external funds in palliative care to allow for efficient service provision. The need for palliative care is increasing hence it should not be overlooked. It centres on improving the quality of life and not simply prolonging it. Future studies could look at patient perspective regarding quality of life and getting inside information on patient and family support as well as effectiveness of symptom control and the extent of difference palliative care has in terms of end of life care for the patient.

Acknowledgements

Management and staff of Queen Elizabeth Central Hospital and Mzuzu Central Hospital for granting us access to their patients’ files. Malawi Cancer Consortium through the Malawi Cancer Registry and University of Malawi, College of Medicine for the funding.

Competing interests

All authors declare that they have no competing interests related to this work. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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