Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya

Background Cancer is the third leading cause of death in Kenya. Yet, little is known about prognostic awareness and preferences for prognostic information. Aim To assess the prevalence of prognostic awareness and preference for prognostic information among advanced cancer patients in Kenya. Setting Outpatient medical oncology and palliative care clinics and inpatient medical and surgical wards of Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya. Methods The authors surveyed 207 adults with advanced solid cancers. The survey comprised validated measures developed for a multi-site study of end-of-life care in advanced cancer patients. Outcome variables included prognostic awareness and preference for prognostic information. Results More than one-third of participants (36%) were unaware of their prognosis and most (67%) preferred not to receive prognostic information. Increased age (OR = 1.04, 95% CI: 1.02, 1.07) and education level (OR: 1.18, CI: 1.08, 1.30) were associated with a higher likelihood of preference to receive prognostic information, while increased symptom burden (OR= 0.94, CI: 0.90, 0.99) and higher perceived household income levels (lower-middle vs low: OR= 0.19; CI: 0.09, 0.44; and upper middle- or high vs low: OR= 0.22, CI: 0.09, 0.56) were associated with lower odds of preferring prognostic information. Conclusion Results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya. Contribution Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients.


Introduction
Cancer is the third leading cause of death by non-communicable disease in Kenya and incidence rates are increasing, up 37 000 from 2012 to 47 887 new cases in 2018. 1,2,3Despite rising incidence, no information exists regarding prognostic awareness or preferences regarding prognostic information among patients with advanced cancer in Kenya.Based on evidence from other African countries, many advanced cancer patients in Kenya are likely to be unaware of their prognosis or not inclined to receive prognostic information. 4,5ognostic awareness can be defined as awareness of disease incurability and shortened life expectancy 6 is associated with more frequent end-of-life discussions, 7 more patient-centric care, 8,9 earlier palliative support, fewer unwanted resuscitations 10 and increased shared decision-making. 11espite these benefits, prognostic awareness remains low among patients with advanced cancer globally. 5,12Patient preference for receiving prognostic information is thought to have increased in

Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya
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recent years as informed decision-making has become more common in medical settings. 13Nevertheless, studies show mixed results with some suggesting patients prefer not to receive prognostic information. 14,15 therefore aimed to examine prognostic awareness and preference for prognostic information among patients with advanced cancer treated at a single cancer centre in Kenya.
We also assessed the relationship between prognostic awareness and preference for prognostic information and patient factors.Based on prior literature, we hypothesised that greater prognostic awareness and preference for receiving prognostic information would be associated with younger age, 13,16 higher education, 14,15 higher income 16,17 and higher symptom burden. 18,19search methods and design

Study design
Data for this study were collected as part of the Asian and African Patient Perspectives Regarding Oncology Awareness, Care, and Health (APPROACH) study, a multicountry cross-sectional study of end-of-life care among advanced cancer patients.

Setting
Data for the Kenya site were collected at Moi Teaching and Referral Hospital (MTRH), Eldoret, a level 6 hospital offering specialised oncological and palliative services with a catchment area of 24 million residents in Western Kenya, Eastern Uganda and South Sudan.

Patient preference for prognostic information
Patients were asked, 'Would you like to know how long you are likely to live under various treatment options?' A dichotomous variable for patient preference was created with a value of 1 for patients indicating, 'yes' in 'general or specific terms' and 0 for patients indicating 'no' or 'not sure'.

Participants' characteristics
Patients' age was extracted from patient medical records; all other variables were based on self-report.Participants reported years of education, perceived household economic status (0: low, 1: lower-middle, 2: upper middle or high) and how long they had known about their cancer diagnosis (0: <1 year, 1: 1 to 3 years, 2: > 3 years).Symptom burden was assessed using questions adapted from the Functional Assessment of Chronic Illness Therapy -Palliative Care instrument (FACIT-Pal) (Version 4). 24Examples of symptoms assessed included pain, shortness of breath and unintentional weight loss.The symptoms were scored on a 5-point Likert scale ranging from '0: not at all' to '4: very much'.Scores were then summed (total score range: 0 to 40) with higher scores indicating greater symptom burden.

Data analysis
We first summarise participants' characteristics with mean and standard deviations (s.d.) for continuous variables and frequencies and percentages for categorical variables.We then fit two binary logistic regression models to assess the association between participant characteristics and: (1) prognostic awareness and (2) preference for prognostic information.The dependent variables were prognostic awareness (0 = unaware, 1 = aware) and preference for prognostic information (0 = no or not sure; 1 = yes).Independent variables for both models were age, years of education, socioeconomic status and symptom burden.
We also conducted a post hoc estimation of the variance inflation factor (VIF) to assess multicollinearity between the independent variables. 25All analyses were conducted using Stata version 15.1.

Ethical considerations
Ethics approval was obtained from the National University Singapore-Institutional Review Board (NUS-IRB LB-15-319) and the Moi Institutional Research and Ethics Committee (IREC/2021/27).Trained interviewers obtained written informed consent from all participants prior to the survey.Only the trained interviewers and study team at MTRH had access to participants' confidential information.Participants were assigned a unique identification number and only de-identified data were collected and analysed.21 to 85 with a mean age of 55 (SD = 15.4) and an average of 8.5 (SD = 4.6) years of education.Slightly more respondents were female (57%) than male and most were married (76%).Perceived household economic status varied among participants with 37% indicating low, 38% indicating lower-middle and a quarter indicating upper-middle or high-income.Most participants (53%) had known of their cancer diagnosis for 1 to 3 years.Participants reported a mean symptom burden score of 13.9 (SD = 7.8; range: 0 to 37).

Prognostic awareness
Nearly two-thirds of participants were aware of their prognosis (64%) (Table 1).When we examined participants' characteristics associated with prognostic awareness in the logistic regression model, we found no significant associations (Table 2).

Preference for prognostic information
One-third (33%) of participants indicated a preference to receive prognostic information (Table 1).When we examined participants' characteristics associated with preference for prognostic information in the logistic regression model, we found significant associations with all participant characteristics (Table 3).Contrary to our hypotheses, increased age was associated with a higher likelihood (odds ratio [OR] = 1.04, 95% confidence interval [CI]: 1.02, 1.07) and increased symptom burden was associated with a lower likelihood (OR = 0.94, CI: 0.90, 0.99) of preference to receive prognostic information.Also contrary to our hypotheses, participants reporting higher perceived household income levels (lower-middle vs. low: OR = 0.19; CI: 0.09, 0.44 and upper middle or high vs. low: OR = 0.22, CI: 0.09, 0.56) were less likely to prefer receiving prognostic information.Supporting our hypothesis, participants reporting higher education levels were more likely (OR: 1.18, CI: 1.08, 1.30) to prefer prognostic information (Table 3).We did not observe multicollinearity in either of the multivariable models (VIF < 2).

Discussion
The primary aim of this study was to examine the prevalence of prognostic awareness and prognostic information preference among advanced cancer patients in Kenya.We also assessed associations between these outcomes and various participants' characteristics.More than one-third of participants (36%) were unaware of their prognosis (defined as current stage [i.e.severity] of cancer), and the majority of participants (67%) preferred not to receive prognostic information.Our findings related to prevalence of prognostic awareness are consistent with other studies of patients in Africa. 5Although our study did not investigate causal factors behind the low levels of prognostic awareness, prior research has suggested the paternalistic nature of the medical system in which patients are often not included as decision-makers, which may have played a role in low prognostic awareness. 26,27However, our results suggest most patients also prefer not to receive prognostic information.
To understand factors influencing prognostic awareness, we examined the relationships between awareness and preference for prognostic information and observable participants' characteristics.Prognostic awareness was not significantly associated with any of the patient factors examined; however, preference for prognostic understanding was strongly associated with patient factors.In line with prior literature, participants in our study reporting higher education levels were more likely to prefer to receive prognostic information. 15These findings are consistent with the notion that individuals with higher education levels tend to have better health literacy.
Contrary to prior studies, we found two generally disenfranchised groups, older adults and those reporting lower household income levels were more interested in receiving prognostic information than their counterparts.Older adults tend to have more emotional stability and to be more accepting of their situation, 28 which may explain why they feel more comfortable requesting and receiving prognostic information. 29Although potential reasons for differences by perceived household income level are less obvious, it may be that individuals with lower income levels are more motivated to understand their illness trajectory so they have a better sense of related financial consequences, which may disproportionately impact their households. 30astly, we found higher symptom burden was associated with a lower likelihood of preference for prognostic information, perhaps suggesting patients with increased symptom burden are weary of receiving bad news.

Strengths and limitations
The strength of this study lies in its examination of patient prognostic awareness and preference for receiving prognostic information in a country in Africa (Kenya) where little information currently exists.This study has several limitations.One limitation was that the study was conducted in a single site in Kenya, and thus results may not be generalisable to other sites in Kenya or Africa.Likewise, the focus on a single condition (i.e.advanced cancer) and missing data (~5%) are additional limitations.Most importantly, this study evaluates correlations and thus cannot identify causal reasons behind the low levels of prognostic awareness and preference for receiving prognostic information.Future studies should explore causal factors related to low prognostic

Conclusion
Our results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya.Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients who were less likely to prefer prognostic information in our study.Interventions to address these concerns might include public health campaigns on the value of informed decision-making, provider training in health communication 31 and protocols requiring informed consent 32 and patient and provider education on advance care planning.Future research should test the effectiveness of these interventions in improving prognostic awareness.

Table 1
presents sample characteristics.Respondents ranged in age from
Note: Due to rounding, percentages may not add up to 100%.†, n = 196; 11 participants did not respond to the question on preferences for prognostic information; ‡, n = 206; §, n = 206.

TABLE 2 :
Associations between prognostic awareness and participant characteristics, N = 205.

TABLE 3 :
Associations between patient preferences for prognostic information and participant characteristics (N = 195).