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Abstract
Objectives Late presentation or diagnosis of cancer results in a poor clinical prognosis, negatively affects treatment and subsequently lowers one’s chances of survival. This study aimed to identify the factors associated with late lung and colorectal cancer presentation and diagnosis in Jordan.
Design This correlational cross-sectional study was based on face-to-face interviews and medical chart reviews from a cancer registry database. A structured questionnaire based on a review of the literature was used.
Setting and participants The study participants were a representative sample of adult patients with colorectal or lung cancer who visited the outpatient clinics at King Hussein Cancer Center in Amman, Jordan, between January 2019 and December 2020, to get their first medical consultation.
Results 382 study participants were surveyed, with a response rate of 82.3%. Of these, 162 (42.2%) reported a late presentation and 92 (24.1%) reported a late diagnosis of cancer. The results of backward multivariate logistic regression analyses showed that female gender and not seeking a medical advice when feeling ill combined was associated with an almost three times increased likelihood of reporting a late presentation with cancer (adjusted OR 2.97, 95% CI 1.19 to 7.43). Not having health insurance and not seeking medical advice combined was also associated with late presentation (2.5, 95% CI 1.02 to 6.12). For lung cancer, Jordanians living in rural areas were 9.29 (95% CI 2.46 to 35.1) times more likely to report late diagnosis. Jordanians who did not screen for cancer in the past were 7.02 (95% CI 1.69 to 29.18) times more likely to report late diagnosis. For colorectal cancer, those having no previous knowledge about cancers or screening programmes had increased odds of reporting late diagnosis (2.30, 95% CI 1.06 to 4.97).
Conclusions This study highlights important factors associated with the late presentation and diagnosis of colorectal and lung cancers in Jordan. Investing in national screening and early detection programmes as well as public outreach and awareness campaigns will have a significant impact on early detection to improve treatment outcomes.
- Gastrointestinal tumours
- PREVENTIVE MEDICINE
- PUBLIC HEALTH
- Respiratory tract tumours
- Quality in health care
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- Gastrointestinal tumours
- PREVENTIVE MEDICINE
- PUBLIC HEALTH
- Respiratory tract tumours
- Quality in health care
Strengths and limitations of this study
The method of collecting data by survey and then validating it using medical records provided more information on patient characteristics and added value to the analysis and study results.
This study focuses on lung and colorectal cancers; therefore, the generalisability of the results to other types of cancer is unknown.
Broader contributing factors beyond those investigated might have affected the outcomes in the study.
Introduction
Unfortunately, cancer remains a primary cause of mortality and a major impediment to life expectancy worldwide. In 2020, approximately 19.3 million people were diagnosed with cancer and approximately 10 million passed away due to cancer worldwide.1 According to the WHO, incidence and mortality are expected to significantly increase in the upcoming years.2 Low-income and middle-income countries reported approximately 70% of the global cancer fatalities according to reports in 2020.3 4 For instance, in the Kingdom of Jordan, the incidence and mortality rates of cancer are rapidly increasing; between 2000 and 2013, the average crude cancer incidence rate in Jordan was 82.8/100 000 population,5 while in 2016, the crude incidence rate increased to 87.2/100 000 population.6 In addition, the treatment costs of some cancer types, such as breast cancer, surged significantly in the late disease stages in Jordan.7 8
Late presentation of cancer has been recognised as a serious public health concern worldwide. Early diagnosis or detection of cancer is crucial for initiating prompt and effective cancer therapy, thereby improving disease recovery.9 10 When cancer therapy is delayed, the chance of survival decreases exponentially, treatment becomes complicated and the costs of healthcare compile.11 A recent systematic review and meta-analysis revealed that a 4-week delay in treatment is significantly associated with an increase in mortality for all cancer types.11 Early cancer detection and diagnosis rely on screening to increase the likelihood of successful treatment.
Among patients with lung and colorectal cancers, late presentation and late diagnosis can have negative impacts on their treatment outcomes and survival rates. Studies have shown that patients who present with advanced-stage disease have a lower chance of being cured and face a higher risk of death. A cohort study from Taiwan found that late-stage diagnosis of lung cancer was associated with lower survival rates.12 Another study published by Andrew et al found that late-stage diagnosis of colorectal cancer was associated with increased risk of death.13 In Jordan, early detection and screening programmes for colorectal and lung cancers are not widely available, which can contribute to late presentation and diagnosis of these cancers among patients.14 This lack of access to early detection and screening may result in a higher burden of disease and poorer health outcomes for individuals with these types of cancers.
Late presentation of patients with cancer seeking medical help is a challenging ambiguous problem, as it is difficult to determine the true disease onset prior to the emergence of signs and symptoms. Nevertheless, reporting signs and symptoms that may or may not be related to cancer are subject to an individual’s health perceptions, health priorities, knowledge and self-consciousness.15 Therefore, determining the exact duration of late presentation is challenging, despite the presence of clinical predictive models.16 Approximately 20%–30% of patients with cancer deliberately delay seeking help for more than 3 months after experiencing symptoms.17 Previous reports suggest that weak or absent public awareness campaigns (at the system level) and failure to recognise or act on suspicious cancer symptoms (at the individual level) are potential causes.18 Late diagnosis, on the other hand, can be attributed to individuals' deliberate refusal to seek a diagnostic service due to fear/anxiety or logistical barriers, such as time constraints, limited access to healthcare systems and affordability.
A recently published article from Indonesia suggested that among patients with breast cancer, a delay in diagnosis is associated with lower monthly household income and a family history of cancer.19 Other factors associated with late presentation are older age, lower socioeconomic status, lower educational level and other psychosocial factors.20–22 Late diagnosis has been also linked to age, gender, presenting symptoms, medical history and misdiagnosis.20–22 Regional and between-country variations were also evident with regard to the duration of late presentation and diagnosis of patients with cancer; however, the situation in Jordan remains unclear. According to reports from high-income countries, late presentation occurs among 17%–35% of patients with cancer, while higher rates have been reported in low-income and middle-income countries.23
Previous studies on the late presentation and diagnosis of cancer have primarily focused on a few types of cancer such as breast cancer, yet few targeted patients with lung or colorectal cancer, especially in Jordan. For instance, only two studies targeted patients with breast and colorectal cancer; however, the sample size was relatively small (weak statistical power). However, lung cancer has not yet been investigated.24 25
Lung and colorectal cancers are highly prevalent in the region, however; they have relatively poor survival rates compared to other cancer types. Factors contributing to late presentation and diagnosis of cancer are under-reported in this region. In Jordan, early detection and screening programmes for colorectal and lung cancers are not widely available, which can contribute to late presentation and diagnosis of these cancers among patients. This lack of access to early detection and screening may result in a higher burden of disease and poorer health outcomes for individuals with these cancers. Therefore, there is an urgent need to explore the extent of late presentation and diagnosis of cancer among the population of patients with lung and colorectal cancers in Jordan and to analyse all the possible factors associated with these outcomes. The findings of this study are of great interest to patients with cancer, their physicians, insurance companies and healthcare system administrators in Jordan. Early detection and treatment can help in reducing healthcare costs and in developing more effective coverage policies that target high-risk populations.
Methods
Study design
This correlational cross-sectional study was based on face-to-face interviews using a structured questionnaire that was validated by a review of medical charts retrieved from a national cancer registry database.
Setting and sample
This study was conducted at the King Hussein Cancer Center (KHCC) in Amman, Jordan, between January 2019 and December 2020. The KHCC is the only specialised tertiary hospital in Jordan that provides diverse treatment modalities and services for cancer care and adopts a multidisciplinary team management approach. More than two-thirds of patients with cancer from all regions of the kingdom are referred to KHCC for treatment. The majority of patients treated at KHCC are Jordanians, yet other patients visit from neighbouring Arab countries. The centre has been accredited by the Joint Commission International as a disease-specific cancer centre. The centre has obtained laboratory accreditation by the College of American Pathologists, American Nurses Credentialing Center, and Association for the Accreditation of Human Research Protection Programs. In this study, a representative sample comprised of adult patients with colorectal or lung cancer who visited outpatient clinics at KHCC to receive their first medical consultation was randomly selected. The study participants were approached by trained research assistants during their visits, consent forms were obtained, and they were then interviewed in private rooms. Patients who were under routine cancer surveillance or refused to provide consent were excluded. Variables such as date of diagnosis, date of birth, stage and type of cancer were validated by revisiting the medical charts to avoid recall bias.
Sample size
Based on a previous study that investigated the late presentation of patients with cancer, we accounted for a 33.9% prevalence of late presentation.24 Because two outcomes were measured in this study (late presentation and diagnosis), sample size calculation was conducted following the Cochran (1977) sample size calculation formula, (n=Z2pq/c2) where (n) is the sample size, (Z) is the standard normal distribution, set at 2.24 that corresponds to 97.5% confidence level, to control for the type 1 error (two-tailed, ɑ=0.025) . To control for the type 2 error, a power of 0.8 and a margin of error of 5% were considered. The sample size was set at 450, yet due to the emergence of the COVID-19 pandemic in Jordan in March 2020 and ceasing of research activities at the targeted setting, 382/464 participants were enrolled (which is satisfactory for a margin of error 5.4%) .
Survey methods
The first outcome of interest in this study was the late presentation of patients with cancer, operationally defined as a 3-month or longer period between the onset of symptoms and the first consultation at a primary healthcare facility. The second outcome was late diagnosis, which was defined as a period of more than 1 month between the first presentation at a primary care facility and the declared diagnosis.26–29 The factors potentially associated with the two study outcomes were participant-related and disease-related characteristics; these variables have been investigated in previous studies.20 22 30
Using a structured questionnaire with data validated from medical charts, the questionnaire included the following measures:
Participant characteristics included sociodemographics such as:
Age, gender, education, marital status, living status, income, place of residence, medical insurance, social security, smoking history
Disease-related characteristics included information about the late presentation and diagnosis such as:
Age at diagnosis, date of diagnosis, date of disease onset, type of cancer, stage of cancer at diagnosis, date of seeking medical care, date of first referral.
Using only a structured questionnaire, the following measures were included:
Date of earliest symptoms noticed, type of symptoms suggested for colorectal cancer and lung cancer separately, if the patient knew anything about lung or colorectal cancer, and if they usually sought medical care when they felt ill.
Statistical analysis
Statistical analyses were performed using SPSS for Windows, V.28.0 (SPSS, Chicago, Illinois, USA). Descriptive statistical analysis was used to characterise the distribution of study exposures (sociodemographic factors and clinical information) and outcomes (late presentation and diagnosis). Data normality was verified using the Kolmogorov-Smirnov test. Since we had binary outcomes, Pearson’s χ2 and Fisher’s exact tests were used to determine the association between categorical independent variables and study outcomes at a probability value of p=0.025. Variables significant at the bivariate analysis level were considered as candidate independent variables for multivariate logistic regression analysis to delineate factors significantly and independently associated with late presentation and diagnosis. In terms of outcome 1 ‘Late presentation’, multicollinearity was tested using the χ2 test: the level of education and insurance variables were statistically associated with each other (p=0.006). Gender was also associated with the level of education (p=0.009). Accordingly, we dropped out the level of education from the model. We then tested for interaction effects and the interaction between gender and health insurance was not significant, so it was dropped out. The interaction between gender/health insurance and seeking medical advice were significant, so they were retained. The pseudo R-square was 16.8%, and the model remained fit (p=0.988). We did not stratify by the type of cancer as it was not statistically significant in the bivariate analysis. In terms of outcome 2 ‘Late diagnosis’, the type of cancer was associated with both previous screening for cancer (p<0.001) and the place of residency (p=0.004). Accordingly, two logistic regression models predicting late diagnosis within the lung and colorectal cancer groups were constructed. The pseudo R-square was 20.5% and 3.9% for lung and colorectal cancers, respectively, and the models remained fit (weaker in the colorectal cancer due to the smaller n). All values of p were two-sided, and the level of significance at the regression analysis level was set at <0.05.
Patient and public involvement
Although the study subjects were not directly involved in the design of this research, we intend to share the study findings with various cancer support groups.
Results
Sample characteristics
A total of 464 individuals were invited to participate, yet 382 participants agreed to enrol in this study, while 82 participants refused, with a response rate of 82.3%. As per the Institutional Review Board, no further information about the latter group were collected. The reason behind their refusal is presumed to be stress since it was their first medical consultation related to cancer. The mean age of the participants (±SD) was 57.3±12 years, with men comprising almost two-thirds of the sample (64.9%). Most of the respondents were married (88.5%), and a similar proportion indicated that they had not undergone cancer screening before (83.0%). Almost 42% of the participants have reported late presentation and only 24.1% had experienced a late diagnosis. Approximately half of the sample (51.6 %) had a positive family history of cancer. Despite the fact that most of the participants sought medical help when they felt ill (61.3%), the majority (76.4%) reported a lack of prior knowledge about cancer. A list of the self-reported early symptoms associated with cancer is presented in table 1.
Symptoms at presentation
Association between the participants' characteristics and study outcomes
Bivariate analyses of the two study outcomes across various sample characteristics stratified by the type of cancer are tabulated in table 2. Women reported higher rates of late presentation with lung cancer (62.1%) compared with men (p<0.025). Those with lower level of education reported late presentation with lung cancer (85.7%) and colorectal cancer (90%) compared with their counter groups, p<0.025 each. Those residing in rural areas reported late diagnosis of lung cancer (46.7%). Having no medical insurance (67.9%) and a family history of cancer (51.5%) were associated with late lung cancer presentation (p<0.025 each). Individuals who did not screen for cancer in the past reported late diagnosis of lung cancer, while those who screened for cancer in the past reported late presentation of lung cancer (53.1%) and colorectal cancer (50%), p<0.025 each. Individuals who did not regularly seek medical advice, reported late lung cancer (54.7%) and colorectal cancer (54.7%) presentations. Other factors that were not statistically significant are presented in table 2.
Sample characteristics across the two study outcomes
Predictors of late presentation with cancer
In terms of lung or colorectal cancers, female patients were three times more likely to report a late presentation compared to males (adjusted p<0.001). In addition, late presentation was associated with having no health insurance and not seeking medical advice when feeling ill, four times higher than the counter groups, respectively, (adjusted p<0.001 each). Being a woman from Jordan and not seeking medical advice when feeling ill were almost three times more likely to report a late presentation with cancers (adjusted p=0.02). In addition, not having a health insurance and not seeking medical advice when feeling ill was associated with late presentation, (adjusted OR=2.5 (1.02–6.12)) (see table 3).
Predictors of late presentation with cancer
Predictors of late diagnosis with cancer
In terms of lung cancer, Jordanians living in rural areas were 9.29 times more likely to report late diagnosis with cancer (adjusted p=0.001). Jordanians who did not screen for cancer in the past were seven times more likely to report late diagnosis with cancer (adjusted p=0.007). In terms of colorectal cancer, having no previous knowledge about cancers or screening programmes increase the odds of reporting with late diagnosis of cancer by twofold (adjusted p=0.035) (see table 4).
Predictors of late diagnosis within the lung and colorectal cancer groups
Discussion
Based on the study findings, being a female in Jordan, having no health insurance and not seeking medical advice when feeling ill have emerged as significant predictors of late presentation. Whereas living in rural areas, Jordanians who did not screen for cancer in the past or had no previous knowledge about cancers have emerged as significant predictors of late diagnosis. The findings of this study provide important insights into the status of late presentation and diagnosis of cancer in Jordan.
Cancer has been deemed a major worldwide health burden. A late presentation or diagnosis of patients with cancer often leads to poor disease prognosis, low survival rate and poor quality of life, especially in developing countries with limited resources such as Jordan.14 31 This will eventually increase the risk of morbidity and mortality in patients with cancer, since their treatment is delayed.11 Addressing this primary healthcare problem is a dual responsibility of both the healthcare system and the individual.32 While this study has analysed the determinants of late presentation and diagnosis at the micro level (individual-related and disease-related factors), we cannot ignore the presence of broader contributing factors, such as the fundamental causes of health (socioeconomics, health policies, access to healthcare systems and health disparities).33 For instance, at some governmental hospitals, late presentation or diagnosis can be attributed to a congested booking system or long queues/waiting times.34 35 Therefore, the contributing factors reported in this study serve as preliminary findings to identify subgroups of patients at a higher risk of enduring a late presentation/diagnosis with cancer and subsequently delayed treatment.
Regarding individual factors, the most obvious finding to emerge from the analysis was that women with colorectal and lung cancers reported higher rates of late presentation. In other words, women in Jordan have higher risk to report late-stage cancer diagnosis. These findings are somewhat surprising given the fact that other studies on gastrointestinal and lung cancer showed that men were more likely to present late;20 22 however, female gender might have interacted with other contributing factors, such as socioeconomic status, level of education, occupation and marital status. For instance, previous reports have highlighted barriers to screening for cancer or seeking medical consultation among women related to cancer worries, appointment issues and costs, in addition to other non-modifiable factors.36 Other factors causing delays in seeking medical consultation among women can be related to cultural practices and a lack of knowledge,37 which has been historically been linked to several health disparities.38 Therefore, public awareness campaigns on cancer should target women through house visits, female social gatherings or networks.
On the system-related factors, this study found that having no health insurance was significantly associated with late cancer presentation. Such finding can be explained by their reluctance to visit doctors because of their lack of affordability.39 However, the relationship between having a health insurance and late presentation/delay has been inconclusive in some studies.40 41 On the other hand, patients who tend not to seek medical advice when they feel ill are more likely to present late with cancer. This could be explained by the fact that patients usually experience normalisation and minimisation, that is, a low risk perception of cancer symptoms, which is consistent with many published articles.42 43
Patients living in rural villages were two times more likely to be diagnosed late with colorectal cancer and nine times more likely to be diagnosed late with lung cancer than those living in urban areas. This is consistent with international studies that suggested the place of residence as a barrier to a timely diagnosis. Those living in rural areas or small towns reported significantly more delays in diagnosis than those living in large cities.42–44 This can be attributed to several factors, including the centralisation of services in cities, unfeasible transportation to primary healthcare providers, limited access to care and the quality of healthcare systems. Therefore, mobile clinics equipped with screening tools and remote public health campaigns in underserved areas of Jordan are recommended.
Patients who have never been screened for cancer were more likely to be diagnosed late. Thus, early detection programmes for colorectal and lung cancers are urgently needed.45 Another important finding was that patients with prior knowledge of cancer were more likely to be diagnosed later. This finding confirms the strong association between lack of knowledge and late diagnosis, as lack of knowledge about cancer leads to poor uptake of screening modalities and a delay in diagnosis.46 47
The current study is one of the very few studies in the region that discusses factors contributing to delays in cancer diagnosis and presentation, especially for lung cancer, which is one of the most common and preventable types of cancer. The ultimate benefit of this study was to explore the factors contributing to the late presentation and diagnosis of cancer, in addition to highlighting the need to improve patients’ awareness and knowledge of the indeterminate symptoms of lung and colorectal cancers. This study also highlights the enormous need for early detection programmes for lung and colorectal cancers and the need to change current strategies to increase knowledge and change behaviours related to cancer. In addition, it highlights the need for efforts directed towards modifiable factors, such as providing health insurance and establishing well-equipped healthcare facilities in underserved areas.
Our study is not without some limitations. First, it did not include all types of cancer; yet, it exclusively focused on lung and colorectal cancers, as no early detection programmes have been established for these types of cancer in Jordan. Therefore, generalising results to other types of cancer should be used cautiously. In addition, this study enrolled Jordanian patients, which limits the representativeness of the sample to other nationalities residing in Jordan.
Conclusion
This study is one of the few studies in the region that attempted to explore the factors associated with late presentation and diagnosis of colorectal and lung cancers, where time plays a critical role in prognosis and treatment. Modifiable factors, such as level of education, health insurance, behaviours towards seeking medical advice, place of residence, screening for cancer and knowledge about cancer, were significant factors contributing to delays. The absence of early colorectal and lung cancer detection programmes in Jordan is a major problem that stakeholders must address. These two cancer types are among the most common in the area; however, they are preventable and their prognosis can be significantly improved by early detection. The results of this study strongly suggest that the government should expand its insurance umbrella to cover unprivileged patients and establish well-equipped healthcare facilities in underserved areas. Unfortunately, knowledge and attitude still appear to be the major factors that cause delays. Therefore, strategies to increase knowledge and enhance attitudes towards cancer screening should be revisited in Jordan, as the currently applied programmes appear inadequate. Further research is needed to examine the factors associated with the delay in presentation among women.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the institutional review board (IRB) at King Hussein Cancer Center (study number: 19 KHCC 041). Participants gave informed consent to participate in the study before taking part.
References
Footnotes
Contributors RD: conception and design, data acquisition, formal analysis and drafting of the manuscript, writing review and editing and project administration. NA-R: conception and design, data acquisition, formal analysis and drafting of the manuscript, writing review and editing. MJ: conception and design, data acquisition and supervision. MS: conception and design, formal analysis and writing review and editing. AA-O: interpretation of data, resources. NA-R, RD and MS act as guarantors of the paper. All authors have critically revised the manuscript for important intellectual content, approve of the final version to be published and agree to be accountable for all aspects of the work.
Funding This research was supported by funds from King Hussein Cancer Center (award number: 19 KHCC 041).
Competing interests None declared.
Patient and public involvement Although the study subjects were not directly involved in the design of this research, we intend to share the study findings with various cancer support groups.
Provenance and peer review Not commissioned; externally peer reviewed.