Patient’s attitudes and perceptions around attending oncology consultations following surgery for colorectal cancer: A qualitative study

Introduction

Colorectal cancer (CRC) incidence has steadily increased in South Africa, and it is now one of the most significant causes of cancer-related morbidity and mortality in the country.¹ The initial recommended treatment for CRC is surgery; however, adjuvant chemotherapy might also be necessary in the context of advanced CRC.² Evidence from clinical trials demonstrates the benefits of receiving adjuvant chemotherapy, notably improved disease-free survival and improved overall survival rates.³ The initiation of chemotherapy is preceded by an oncology consultation, at which a patient is assessed as a possible candidate for treatment by an oncologist.⁴ A treatment plan might also be communicated by the oncologist to patients who are deemed good candidates for adjuvant chemotherapy.⁴ Therefore, the oncology consultation is seen as a crucial step to the possible receipt of chemotherapy. The published literature reports that 15-34% of eligible CRC patients will not participate in a scheduled oncology consultation,^5,6 and, therefore, will likely not end up receiving their recommended chemotherapy. Given the growing public health problem posed by CRC in South Africa and the implications if patients do not access and discuss treatment options with an oncologist, this study sought to explore South African patients’ attitudes and perceptions around attending scheduled oncology consultations following surgery for CRC.

Methods

Study design and setting

This was an exploratory, qualitative study. The theoretical framework adopted for this study was the “Model of health services use”.⁷ As outlined in Figure 1, this model proposes that an individual’s use of healthcare services is based on the interaction of factors which predispose him/her to use healthcare services, factors which facilitate or hinder the use of healthcare services, and factors that drive the need for care. This study was conducted at the Inkosi Albert Luthuli Central Hospital (IALCH) in Durban, South Africa. The hospital is a government-funded facility which offers specialist healthcare services, including oncology care, to the population of the KwaZulu-Natal Province on the eastern seaboard of South Africa. IALCH is the only quaternary-level hospital in the province, and patients predominantly access health care services at the facility after being referred from lower-level healthcare facilities.

Figure 1. Outline of the “Model of health services use”.

Results

Discussion

Although it is based on a small sample size, the observed oncology consultation no-show rate in this South African study was comparable with the range of no-show rates reported in the published literature from high-income countries,^5,6 suggesting that non-compliance with scheduled oncology consultations amongst CRC patients is indeed a global problem. However, this finding takes on added significance in the South African context for two reasons: Firstly, CRC is an emerging public health concern in South Africa, even amongst younger populations,^1,11 and the expectation is that there would also be a growing trend in the number of individuals who require surgery and additional oncologic treatment for CRC. Secondly, the South African public healthcare sector is resource-constrained when compared with public health systems in high-income countries,^12,13 and missed oncology consultations would have implications for efficient utilisation of clinical oncology services, as well the downstream consequences of incomplete CRC treatment on patient clinical outcomes.

The published literature reports that a large portion of cancer patients do not receive oncology care due to their refusal of treatment,¹⁴ highlighting the importance of patient-centered research in this population. The current study improves our understanding of context-specific factors that influence a patient’s decision to default on a scheduled oncology consultation. The study has identified several key contextual factors of interest, all of which fall within the scope of the established “Model of health services use” and are amenable to modification. These factors must be considered by South African public health specialists when tailoring a response to this challenge.

A clear understanding of CRC and its treatment is required to enable patients to make informed decisions regarding their subsequent oncology care.^15,16 Public health campaigns targeting CRC are generally lacking in African countries.¹⁷ Therefore, South African CRC patients have limited access to vetted educational materials on the subject. Most patients in the current setting will likely receive information about their disease via a direct conversation with the healthcare workers who are also treating them, or their information will be based on discussions with their friends and family. In the current study, several participants expressed misconceptions around the causes of CRC and how the disease progresses. Not only does this finding emphasize the shortcomings in how healthcare workers communicate information on CRC to afflicted patients, but it also questions the quality of information delivered through other traditional sources. There is much scope to improve patient information to the general public through the well-designed educational materials on CRC. As per the characteristics of the study sample, the CRC population of KwaZulu-Natal Province is racially and culturally diverse.¹¹ Accordingly, any new educational materials or awareness campaigns for CRC will need to be culturally relevant and accessible in isiZulu, the most common dialect in the region. Knowledge and awareness campaigns have proven to be effective at increasing the use of CRC disease screening,¹⁸ and this approach will likely have a similar impact on other aspects of the cancer treatment pathway, including oncology consultation attendance.

The perceived need for healthcare can be an important factor which prompts patients to seek healthcare services.^19,20 While it is encouraging that most study participants had still perceived themselves as being at risk for CRC following surgery (and there still being a need for additional oncology care), patient educational materials on CRC would also be of benefit in raising awareness around the consequences of incomplete oncology treatment in those who do not feel the need for further oncology care due to misconceptions related to the seriousness of the disease.

Communication of CRC information between healthcare workers and patients, particularly information regarding the importance of oncology care, can be improved through educational interventions for healthcare workers. In-person workshops to improve physician’s communication practices with cancer patients have been well-received.^21,22 Formal training in communication practices would also ensure that relevant information on CRC treatments is communicated to patients and delivered in a standardised manner.

Up to 80% of cancer patients desire a qualitative prognosis (i.e. “Will I die from this disease”) from their attending physician.²³ This conversation can be difficult for the physician for several reasons: news of a poor prognosis can be depressing for a patient and could lower their motivation for additional care; the misconception that involvement of Hospice care will reduce patient survival; fear that the prognosis may be incorrect, and the possible medicolegal implications thereof; whether it is culturally appropriate to deliver news of a poor prognosis to some patients; and the stress that delivering this news places on the physician himself/herself.²⁴ Approaches to assist physicians having this complex and difficult discussion with their patients have been reported.²⁵ The first step in this process involves establishing whether the patient wants to know more on their prognosis, and how much they would like to know. For patients who do request more information on their prognosis, the content of the discussion is then negotiated; information is provided; the patient’s (and family’s) response to the news is acknowledged; and the patient’s understanding of the discussion should be assessed.²⁵

The important role played by family in providing motivational support to a cancer patient during their treatment journey has long been acknowledged. A recent systematic review reported that being married (versus being unmarried) was associated with a significantly lower odds of treatment refusal amongst CRC patients.²⁶ In addition to motivational support, participants in the current study also stated that family members were crucial in providing financial support or directly facilitating their attendance to hospital visits. These important roles played by family members should be encouraged and strengthened. However, there might be instances where a patient does not have any family members to support them during their cancer treatment journey. In such instances, close friends or peers may assume this supportive role. Peers are cancer survivors who have been cured of cancer, and are thus well-placed to provide motivation, advice, and information to other cancer patients who are just beginning their treatment journeys.²⁷

Spirituality is considered a fundamental component of holistic person-centered care.²⁸ The published literature demonstrates the benefits of religion and spirituality in the context of cancer, empowering patients to accept their illness and allowing them to deal with it in a way that is both positive and purposeful.^29,30 This notion was indeed confirmed in the current study, with many participants citing religion as a source of strength and a coping mechanism as they battle their disease. It is therefore crucial that the spiritual needs of CRC patients be assessed and addressed throughout the cancer treatment journey. There are existing tools that have been used to assess the spiritual needs of cancer patients,³⁰ however these originate in populations which are culturally and racially different from the South African population. The existing tools may, however, be less accurate in assessing the spiritual needs of CRC patients in the South African setting, thereby necessitating the development of a locally relevant tool for this purpose. Oncology units should also look to work closely with community-based religious groups, to ensure that patients who do require spiritual support are able to draw on support from community-based resources.

Even in settings where efficient transportation networks exist, distance to a healthcare facility is known to impact compliance with cancer treatment.³¹ It is therefore unsurprising that transportation costs were cited by participants in this study as a barrier to attending an oncology consultation. This barrier could potentially be addressed in one of two ways: Firstly, transportation to the hospital on the day of the oncology consultation could be arranged through provision of a dedicated hospital bus service to patients.³² Secondly, it might be possible to decentralise the oncology consultation to a lower-level healthcare facility which is closer to a patient’s place of residence,³³ thereby facilitating attendance of the consultation. Both proposed solutions are likely to have financial implications for the resource-constrained South African public healthcare system. However, this would be worthwhile in the long term as patients with CRC would be linked to care more efficiently, thereby averting some of the undesired clinical outcomes associated with this disease.³⁴

Forgetting or being completely unaware of a scheduled clinic appointment are common reasons for missed clinic appointments and are not unique to oncology care.³⁵ Many participants in this study expressed the need to be reminded about their oncology consultation. Ownership of mobile phones amongst the South African population is high when compared with other African countries,³⁶ and the opportunity exists to leverage this technology to reduce the possibility of missed oncology appointments in CRC patients. Pre-appointment short message service (SMS) alerts have been used with much success (reduced the “did not attend” response by nearly 50%) in the United Kingdom at a breast cancer clinic.³⁷ However, there are several factors which must be considered before a similar intervention for CRC patients can be implemented in South Africa. These factors include illiteracy, patient confidentiality, and loss or theft of mobile phones.³⁸ Allowing for flexibility in the patient appointment scheduling system might be appreciated by patients who are employed and who may not be able to take time off from work on their initially scheduled appointment date.³⁹ Lastly, identifying gaps in the patient admission system and addressing these gaps would help alleviate the frustrations around patient workflow between the hospital admissions department and the oncology clinic.⁴⁰

This research was not without limitations. The sample size was small, and the quantitative findings on oncology consultation no-shows should be interpreted with caution. Although the study participants were representative of the CRC population in KwaZulu-Natal Province,¹¹ they are likely to differ from CRC patients in other South African provinces and the findings of this research might therefore not be entirely applicable to CRC patients across all the South African provinces. This study did not include CRC patients from the South African private healthcare sector, who might also have different attitudes and perceptions around attending oncology consultations following their surgery. In addition, this study enrolled participants over a short time period and it is also possible that there might be seasonal differences in oncology consult no-show rates or patient responses as to why they would possibly not attend an oncology consultation.

In conclusion, this study has identified several contextual factors based on the “Model of health services use” which can potentially influence a patient’s compliance with a scheduled oncology consultation following CRC surgery. Bearing in mind that these contextual factors are unlikely to occur in isolation, a multipronged approach which addresses these factors is required to improve CRC patient’s compliance with oncology consultations. Despite the useful information yielded by this study, the findings should be confirmed with additional research which attempts to address some of the limitations that have been declared.