Original Research

Quantitative exploration of barriers to access cancer services experienced by cancer patients in Lesotho

Maseabata M. Ramathebane, Mopa A. Sooro, Lineo J. Maja, Kabelo Mputsoe, Molungoa Sello, Motselisi C. Mokhethi

Received: 23 Nov. 2023; Accepted: 09 May 2024; Published: 08 July 2024

Copyright: © 2024. The Author(s). Licensee: AOSIS.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Background: Cancer mortality has been estimated to increase in sub-Saharan Africa to more than a million deaths in 2023. There is a need for an increase in cancer screening, diagnosis and treatment infrastructure to curb this rise in cancer mortality. Many people with cancer face significant barriers to accessing treatment.

Aim: The study aimed to explore barriers to accessing cancer care services experienced by cancer patients in Lesotho.

Setting: This study was conducted at the Senkatana oncology clinic in Maseru, Lesotho.

Methods: The study adopted a quantitative cross-sectional design. Cancer patient interviews were conducted using a structured questionnaire.

Results: A total of 115 patients responded to the questionnaire, and 79.1% were female. Over half of the participants (53.9%) found it difficult to access cancer services because they had to get services from multiple healthcare facilities in different areas. All of them had to join long queues. Distance from the healthcare facilities was also a challenge for a significant number (64.3%), and a substantial number (66.1%) had difficulties arranging transport to such facilities. Finally, financial issues, such as paying for transport, healthcare and diagnostic tests, were determined to be major constraints.

Conclusion: The study concludes that most cancer patients face financial and practical barriers. This affects access to cancer services, particularly for patients not residing in Maseru.

Contribution: The study shares information regarded as barriers to cancer services in a low- and middle-income country.

Keywords: access; cancer services; barriers; transport; Lesotho.

Introduction

In 2020, there were an estimated 19.3 million new cancer cases globally, and almost 10.0m cancer-related deaths occurred.¹ Female breast cancer was the most commonly diagnosed, followed by lung, colorectal, prostate and stomach cancers.¹ Lung cancer is the leading cause of cancer death (18%), while female breast cancer is the least (6.9%). In Africa, the incidence of cancer increased from 715 000 in 2008 to 1.1m in 2020, and the cancer deaths increased from 542 000 in 2008 to 711 000 in 2020.² In sub-Saharan Africa, 801 392 new cancer cases and 520 158 cancer deaths were estimated to have occurred in 2020.³ Common cancers include breast and cervical cancers, ranking first in 28 countries and 19 countries, respectively.³ In 2022, the incidence of cancer in Lesotho was 2027 cases, and the number of cancer deaths was 1411.⁴ The top three leading cancers in Lesotho are cancers of the cervix, breast and prostate. The incidence of cancer of the cervix, breast and prostate are at 25.3%, 8.1% and 7.3%, respectively. Mortality rates of cervical cancer, breast cancer and prostate cancer are at 25.9%, 6.5% and 7.6%, respectively.^4,5

Lesotho is a small country in sub-Saharan Africa surrounded by South Africa and is characterised by its mountainous terrain.⁶ The landscape of Lesotho is dominated by the Maloti and Drakensberg mountain ranges, with peaks exceeding 3000 m. The country has about 2.2m people.⁶ Lesotho is administratively divided into 10 districts. The healthcare system comprises the national, district and primary healthcare levels, including a mix of public and private healthcare providers.⁶ The majority of the population relies on public health services.

Access to healthcare in Lesotho is hindered by the mountainous terrain, which can make reaching remote communities difficult, especially during bad weather. To improve healthcare accessibility and quality, healthcare facilities were expanded, and community health workers were introduced to provide health services in remote areas. However, Lesotho continues to struggle with healthcare disparities between urban and rural areas.⁷ Additionally, shortages of healthcare professionals, limited infrastructure and inadequate funding further strain the healthcare system.^7,8,9

Osei-Fofie et al. highlighted that there was a lack of facilities or trained oncologists and other healthcare professionals for cancer care in some low-income countries.¹⁰ Osei-Fofie et al. further indicated that cancer patients who needed chemotherapy in Lesotho were taken to India for treatment, while those needing radiotherapy were taken to South Africa.¹⁰ Senkatana Oncology Clinic is the only oncology clinic located at the Botshabelo complex in Maseru and serves the whole cancer population of Lesotho.^11,12 Senkatana Oncology Clinic was established through the Bristol-Myers Squibb Foundation Global Cancer Disparities (BMSF-GCD) (Africa) funding in 2020 as the first Lesotho cancer treatment centre.^11,12

Many people with cancer face significant barriers to accessing cancer care and treatment. Financial issues prevent patients from accessing the care they need, and those who have survived cancer experience various financial hardships.^13,14 In Lesotho, cancer treatment is financially supported by the government, where almost $7m a year is spent on sending Lesotho cancer patients to South Africa and India for treatment and care.¹⁵ The Ministry of Health Lesotho funds the provision of cancer treatment that cannot be offered by any health facility in the country.¹⁶ Patients living in rural areas face significant challenges when it comes to accessing cancer treatment.¹⁰ In addition to the physical distance, there may be limited transportation options, making it difficult for patients to get to appointments and receive treatment regularly.¹⁷

A lack of awareness about cancer, service availability and treatment options can be a major barrier for patients. Accurate and up-to-date cancer information is essential, without which patients may not be able to access cancer services.¹⁸ Healthcare providers play an important role in educating patients about cancer and service provision.^12,19 This can include providing written materials, offering one-on-one counselling sessions and referring patients to support groups, social media, radio and television. Okyere et al. affirmed that a lack of awareness of cancer services, such as supportive and palliative care services, leads to symptoms of distress among cancer patients that impact their quality of life.²⁰

Communication between patients and healthcare professionals is an important factor in cancer care, the lack of which may compromise access to appropriate care. Some patients have reported communication problems where healthcare providers are inaccessible or have limited cancer information.²¹ Furthermore, some patients may feel uncomfortable discussing their health concerns with healthcare providers if they do not speak the same language or share the same cultural values.²²

The barriers to cancer care in Lesotho are unknown, and understanding the burden is critical to improving patient outcomes and care delivery. The current study intends to explore the barriers constraining access to cancer care services for patients in Lesotho.

Methods

Design

A quantitative cross-sectional study was conducted using a structured questionnaire.

Setting

The study was conducted at Senkatana Oncology Clinic at the Botshabelo complex in Maseru. Senkatana Centre of Excellence was established in 2004 to address the human immunodeficiency virus (HIV) and/or acquired immunodeficiency syndrome (AIDS) pandemic as the first site to pilot antiretroviral therapy (S+ART) in Lesotho. Senkatana Oncology Clinic was established through the Bristol-Myers Squibb Foundation (BMSF) Africa cancer disparities funding in 2020 as the first Lesotho cancer treatment clinic. This is the only oncology clinic serving the whole country’s cancer population.

Population and sample determination

The study participants were selected from the active cancer patient files at the Senkatana Oncology Clinic, which totalled 696. The sample size was calculated with a 5% margin of error and a 95% confidence interval. Convenience sampling was adopted to gather the data from the sample.

Inclusion and exclusion criteria

The study included all cancer patients available at the oncology clinic during the data collection period, and those who were not present were excluded.

Data collection instruments

Structured questionnaires were used to collect data from cancer patients. The questionnaire was developed from the published questionnaires on the subject.²³ It was reviewed by the researchers and an expert and adopted to suit Lesotho’s situation. It included patient demographics and critical questions related to barriers to cancer services.

Data gathering process

Data collectors were trained before the collection of data for a week. Before scaling up the data-gathering process, a pilot study was conducted using the translated structured questionnaire on the first five patients. The data were analysed, and modifications were made to the questionnaire to ascertain that the questionnaire captured the information intended to be collected. The data collection process was then scaled up over 12 weeks, where 115 patients were interviewed.

Data analysis

Data were captured into Microsoft Excel^® and analysed using descriptive statistics with Statistical Package for Social Sciences (SPSS) version 16. Thirty-two point questions were administered to patients, and through the use of percentages, patients’ barriers were identified. Patients’ gender and occupation were related to barriers.

Ethical considerations

Ethical approval was granted by the Lesotho Ministry of Health, National Research and Ethics Committee (NHREC) (ID 04-2023). Permission to conduct the study was sought from the Ministry of Health and Senkatana Oncology Clinic. Only codes were used to identify the cases. All research data were encrypted and stored in a lockable cupboard. Patients filled out informed consent forms before the interview. Data collectors and researchers also filled out confidentiality forms.

Results

The target sample size was set at 248 patients, of which 115 were met by data collectors during the data collection period, translating into a response rate of 46.4%. Despite having a 12-week data collection period, which gave each patient at least two chances to be interviewed, most patients could still not be interviewed because they did not visit the clinic during the data collection period as stipulated in the inclusion criteria.

Characteristics of patients

The study further related the characteristics of patients.

Table 1 shows that female patients (79.1%) were more likely to be married than male patients (20.9%). Most patients were aged 35 years – 64 years, married and had completed primary education. Most were unemployed, with retail being the most common occupation. Most patients were Christians (99.1%) and 52.2% were HIV positive. Most patients had one to four biological children.

Table 2 shows cancer patient distribution based on HIV status and cancer type. Most were HIV-positive, with cervical, breast and prostate cancers among HIV-positive patients, and 47.8% were HIV-negative.

Barriers to access and cancer care services

The study further related the barriers to access to cancer care services.

Table 3 shows that most patients (95.7%) were not embarrassed to seek cancer care, had a positive attitude towards healthcare workers and had no competing priorities. They did not feel scared or worried about wasting time, had no difficulties making appointments and found the opening hours convenient. Most patients (93.9%) felt that healthcare professionals provided detailed information, were approachable and provided medical advice. Most (97.4%) reported not being busy and work demands did not hinder access to healthcare services. Most (94.8%) felt that a lack of information or awareness of cancer matters and a lack of physical guidance were not barriers to accessing cancer services. Overall, patients felt comfortable seeking services. The study found that 53.0% of patients struggled to access cancer services because of multiple facilities and queues (53.9%). A total of 66.1% had difficulties arranging transport to doctors and 64.3% believed distance from facilities was a barrier. Most patients did not have disabilities or mental health issues, and 69.6% reported difficulties in paying for healthcare, including transport and diagnostic tests.

In summary, the results revealed the following as barriers faced by many patients: (1) queuing at multiple healthcare facilities, (2) getting services at multiple facilities, (3) difficulty arranging transport to the doctor, (4) distance from healthcare facilities even if transportation is available, (5) paying for healthcare is a problem, (6) paying for transport and (7) paying for diagnostic tests. Therefore, these are the barriers of concern.

Gender and barriers of concern

The study further related gender to the barriers of concern.

Table 4 shows the results of the univariate analysis to define the association of gender with barriers to accessing cancer care services. The results indicated that difficulty arranging transport to the doctor (Odds Ratio [OR] = 0.338; 95% confidence interval [CI] = 0.135–0.852) is a significant barrier to accessing cancer care services among the included males. However, all other barriers of concern were not significantly associated with the gender of the patients.

Age and barriers of concern

The study further related age to the barriers of concern.

Table 5 depicts the results of the univariate analysis to define the association of age with barriers to accessing cancer care services. The results indicated that there was no significant association between patients’ age and all the barriers of concern.

Level of education and barriers of concern

The study further related the level of education to the barriers of concern.

Table 6 presents the results of the univariate analysis to define the association of the level of education with barriers to accessing cancer care services. The results indicated that difficulty arranging transport to the doctor (OR = 3.696; CI = 1.454–9.395) is a significant barrier to accessing cancer care services among patients with higher education (> High school). However, all other barriers of concern were not significantly associated with the level of education of the patients.

Discussion

The study indicated the female-to-male ratio to be 4:1 for both the study sample and the study population. Similarly, Banks and Baker stated that hesitancy for males to utilise primary healthcare services, including prostate cancer services, could be one of the reasons why there are more females compared to males.²⁴ Dijksterhuis et al. highlighted that the influence of gender disparities on cancer screening and diagnosis underscores the significance of comprehending the effects of gender differences throughout the cancer care process.²⁵ The authors further suggested that biological and social determinants of health could be among the factors contributing to this disparity, thus worth taking into consideration.²⁵ Most cancer patients were in the age range of 35–64 years.

In the present study, most cancer patients were HIV positive. In Lesotho, cervical cancer was the leading cause of death among women, with an incidence rate of 27.8/100 000 in 2012, which was attributed to the high HIV incidence and prevalence.²⁶ The incidence of cancer in sub-Saharan Africa has been associated with infections such as HIV.²⁷ The current study shows that cervical, breast and prostate cancers were common among both HIV-positive and HIV-negative patients. These results are similar to the sub-Saharan African study that highlighted the same cancer types as the top five leading cancers.³ In Lesotho, because of high HIV prevalence and limited cervical cancer screening,¹² cervical cancer is the leading cancer in the country. The results are similar to Dhokotera et al., who stated that high prevalence and poorly controlled HIV can increase the risk of human papillomavirus (HPV) co-infection, which, in turn, increases cervical cancer risk.²⁸ A study conducted in Southern Africa also indicated that 63.8% of women with cervical cancer were living with HIV, as were 27.4% of women in Eastern Africa.²⁹

With regard to emotional barriers, the majority of patients did not experience emotional barriers. Patients showed a positive attitude towards cancer services, and they indicated this by stating that they were not embarrassed to seek cancer services. These findings are similar to those of a study carried out among individuals living in Maseru, Lesotho, in 2021, which revealed that participants held favourable views towards cancer services and expressed a preference for seeking medical attention promptly upon experiencing symptoms suggestive of cancer.¹² However, there were some patients who reported feeling scared, some not confident about the symptoms of cancer and those who were worried about wasting the doctor’s time suggesting interventions to address these barriers. Nevertheless, Elshami et al. suggested that within the Middle East, the primary barriers perceived when seeking cancer care were feelings of fear and apprehension about potential diagnoses, followed by practical and service-related obstacles.²³ Moreover, Elshami et al. noted that females and adolescents were more prone to cite fear as a hindrance to seeking medical guidance.²³

In addition, patients were satisfied with the services they get from the clinic, including easy communication with doctors and other health service providers, appointment setting and convenient opening hours. Consistently, Mahapatra et al. found that interpersonal rapport and good doctor–patient relationships were a cornerstone of high patient satisfaction.³⁰ At Senkatana Oncology Clinic, the majority of the healthcare professionals are native citizens of Lesotho, and this eases communication with patients. Conversely, the study of Yashadhana et al. suggested that many patients from diverse backgrounds may not feel comfortable discussing their health concerns with healthcare providers if they do not speak the same language or share the same cultural values.²² The study findings highlighted that patients prioritise cancer services over other engagements, such as being too busy or going to work. One study indicated that women were more likely busy to seek cancer services.²³ Some patients indicated that lack of information did not prevent them from accessing cancer services.³¹ However, other studies note that some patients wished to be given information after diagnosis, and abut sided effects and after surgery.^31,32

On the contrary, patients had problems with queuing for services at multiple healthcare facilities. Ramutumbu et al. found that patients are uncomfortable with long queues and a shortage of doctors, which delay early diagnosis and early treatment.³³ Patients also indicated arranging transport and distance from the facilities as barriers to cancer services. In Lesotho, there is only one cancer treatment clinic, and patients have to travel from all over the country to access cancer services at this clinic.^10,11 Cateche-Condor et al. state that patients living in rural areas or far from treatment centres often face significant challenges when accessing cancer treatment as there may be limited transportation options, making it difficult for patients to get to appointments and receive treatment regularly.¹⁷ Further, patients highlighted financial barriers such as paying for healthcare, transport and diagnostic tests while seeking cancer services as noteworthy barriers. This might have an impact on the emotional barriers that some patients expressed. Similarly, the distance from healthcare facilities, even if transportation is available, might have an impact on the barrier of paying for transport. Difficulty in arranging for transport to the doctor may also be attributed to the location and topography of Lesotho.

Univariate analysis was carried out to determine the association of gender, age and level of education with barriers to accessing cancer care services. While patients reported encountering obstacles with all these barriers, statistical associations were observed between gender and the challenge of arranging transportation to the doctor, as well as between the level of education and the difficulty in arranging transportation to the doctor. The study of Elshami et al. reported similar results among adolescent and female adults.²³

The study’s implications are that barriers to cancer services are now known and can be addressed to improve access to cancer services. This has positive results on early screening, leading to early diagnosis and treatment. Regarding future research, follow-up on utilisation of cancer screening for males would be a useful study that will inform actions to take to encourage more males to use cancer services for early screening, diagnosis and treatment.

Limitations

The target sample size was set at 248 patients, of which 115 were met by data collectors during the data collection period, translating into a response rate of 46.4%. Despite having a 12-week data collection period, which gave each patient at least two chances to be interviewed, most patients could still not be interviewed because they did not visit the clinic during the data collection period as stipulated in the inclusion criteria. Only two interviewers were engaged, interviewing patients while queuing for services. The time taken for the interview of one patient denied other patients an opportunity to be interviewed.

Conclusion

The study shows that many of the barriers identified in this study are not considered constraints by patients in Lesotho. Queuing at multiple healthcare facilities and accessing services from multiple facilities, most of which are located in different areas, are identified barriers to access to cancer services in Lesotho. In addition, patients highlighted financial constraints in paying for transport, diagnostic tests and other healthcare costs while seeking cancer services. The barriers were found to be constraining, mostly to females than their male counterparts and the unemployed as opposed to other groups.

Recommendations

Based on the findings, it is highly recommended that cancer screening, diagnosis and treatment services be expanded to cover both the rural and urban regions of Lesotho. With the current prevalence of cancer, there is a need for more cancer treatment centres in the country. This will reduce the transportation and lodging costs patients incur to access services at the centre in Maseru.

The Government of Lesotho should sponsor diagnostic and healthcare costs to patients by sourcing diagnostic laboratory services from private laboratories through a third party that can have a contract with private laboratories.

Acknowledgements

The authors would like to extend their gratitude to Dr P. Ntsekhe, T. Mpo, M. Matsoso, A. Masilo and M. Tlebere for their valuable support. They would like to also thank the staff from Senkatana satellite clinics and the study participants. Data collectors and supervisors are also appreciated for the hard work they did.

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

M.M.R. was the principal investigator and contributed to the preparation of the manuscript. M.A.S. was the co-principal investigator and contributed to the preparation of the manuscript and typesetting. M.S. contributed to the data analysis and methodology of the study. K.M. contributed to the formulation of questionnaires and ethics approval and supervision of the study. L.J.M. contributed to the data cleaning and proofreading of the manuscript. M.C.M. contributed to the proofreading and supervision of the study.

This study was supported by the Bristol-Myers Squibb Foundation – Global Cancer Disparities – Africa programme.

Derived data supporting the findings of this study are available from the corresponding author, M.M.R., on request.

The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.

References