|Year : 2022 | Volume
| Issue : 1 | Page : 45-51
Impact of demographic factors on delayed presentation of oral cancers: A questionnaire-based cross-sectional study from a rural cancer center
Anshul Singla1, Alok K Goel2, Simmi Oberoi3, Shivani Jain1, Deepak Singh1, Rakesh Kapoor4
1 Department of Head and Neck Surgical Oncology, Homi Bhabha Cancer Hospital, Mullanpur and Sangrur, Tata Memorial Center, Punjab, India
2 Department of Medical Oncology, Homi Bhabha Cancer Hospital, Mullanpur and Sangrur, Tata Memorial Center, Punjab, India
3 Department of Community Medicine, Rajendra Medical College, Patiala, Punjab, India
4 Department of Radiation Oncology, Department of Director, Homi Bhabha Cancer Hospital, Mullanpur and Sangrur, Tata Memorial Center, Punjab, India
|Date of Submission||14-Dec-2021|
|Date of Decision||03-Mar-2022|
|Date of Acceptance||10-Mar-2022|
|Date of Web Publication||31-Mar-2022|
Alok K Goel
Homi Bhabha Cancer Hospital, Mullanpur and Sangrur, Tata Memorial Center, Punjab
Source of Support: None, Conflict of Interest: None
Background: Oral cancer is a major health issue in India. The majority of patients with oral cancer present at an advanced stage.
Objectives: We aimed to understand the factors responsible for delay in presentation of patients with oral cancer in rural areas.
Materials and Methods: This questionnaire-based, cross-sectional study on patients with oral cancer was conducted in the head and neck surgical outpatient department of our tertiary care center at Homi Bhabha Cancer Hospital, Sangrur, between June and September 2021. A questionnaire consisting of 31 multiple choice questions was administered to consenting patients. The demographic and socio-economic profile of the patients, their knowledge of risk factors, and their symptomatology, attitude towards cancer management, access to cancer care, and knowledge about cancer treatment and its outcomes were assessed.
Results: A total of 200 patients were included; 70% were men. About 60% of the participants had to travel more than 100 km to reach our center. About 50% of the patients were addicted to tobacco in some form. Only 30% of the participants were aware of the risk factors for oral cancer. The median time between symptom onset and seeking any medical consultation was 120 days, whereas the median time between symptom onset and cancer diagnosis was 165 days. About 75% of patients initially consulted an alternative medicine practitioner, and 90% took some form of alternative treatment before consulting a cancer specialist. Around 80% considered alternative medicines to be an effective form of cancer treatment.
Conclusion: Our study shows a gross lack of awareness and multiple misconceptions that prevail in the rural population. Increasing public awareness, training primary healthcare workers to pick up on early signs of oral cancer, promoting tobacco cessation activities, and teaching oral self-examination and its importance to people can help tackle the problem of delayed presentation of oral cancers.
Keywords: Delayed diagnosis, head and neck cancer, India, late presentation, oral cancer, rural
|How to cite this article:|
Singla A, Goel AK, Oberoi S, Jain S, Singh D, Kapoor R. Impact of demographic factors on delayed presentation of oral cancers: A questionnaire-based cross-sectional study from a rural cancer center. Cancer Res Stat Treat 2022;5:45-51
|How to cite this URL:|
Singla A, Goel AK, Oberoi S, Jain S, Singh D, Kapoor R. Impact of demographic factors on delayed presentation of oral cancers: A questionnaire-based cross-sectional study from a rural cancer center. Cancer Res Stat Treat [serial online] 2022 [cited 2022 May 28];5:45-51. Available from: https://www.crstonline.com/text.asp?2022/5/1/45/341239
| Introduction|| |
About one-third of the total global burden of oral cancer is contributed by India. As per GLOBOCAN 2020, it is the second most common cancer in India across both sexes and the most common cancer among Indian men. It causes more than 72,000 deaths annually, making it one of the most common causes of cancer-related mortality, second only to breast cancer.
Even though recognizable symptoms appear early in this malignancy, the majority of patients present for management at an advanced stage of the disease. This limits the proportion of patients eligible for curative-intent treatment. Moreover, even those with locally advanced disease who receive curative-intent treatment require extensive surgical resection and complex reconstructions. This affects treatment acceptance, compliance, and completion in these patients, ultimately leading to functional compromise, a decrease in quality of life, increased treatment morbidity, and decreased survival.
Multiple factors could be responsible for delayed presentation of patients with oral cancers, including those related to the patients, primary physician, community beliefs, cultural practices, awareness, accessibility, and so on. Identifying these factors can help policymakers, public health workers, and physicians to intervene in a systematic and planned manner, leading to early detection and timely management. This knowledge may be even more relevant in rural settings, where a more complex interplay of various factors is expected and complicated further by poor educational and socioeconomic status, resulting in false beliefs and low level of awareness.
Despite the overwhelming burden of this problem and substantial expected benefit from targeted interventions, there is a paucity of data in this area, with no studies addressing this problem in the rural population at large. Therefore, we sought to understand the factors causing delayed presentation of patients with oral cancers in the rural setting. We conducted this study at our tertiary care center located in the Malwa belt of Punjab, infamously referred by many as the “cancer belt”, which caters primarily to the local rural population. There is a gross insufficiency of cancer care facilities in the area, with a significant number of patients forced to travel from Punjab to Bikaner in Rajasthan for treatment. The efflux was so prominent that the train to Bikaner was popularly known as the “cancer train”, although this number has decreased to almost half with the opening of our center.
| Materials and Methods|| |
General study details
This questionnaire-based, cross-sectional study was conducted among patients with oral cancer presenting to the head and neck surgical oncology outpatient department (OPD) of our tertiary care cancer hospital at the Homi Bhabha Cancer Hospital, Sangrur in Punjab, India, between June and September 2021. The study was conducted according to ethical guidelines established by the Declaration of Helsinki and other guidelines like the Good Clinical Practice Guidelines and those established by the Indian Council of Medical Research. The study was approved on 15 July 2021 by the Institutional Ethics Committee (Ethics approval number: 1400003) (Supplementary appendix 1). Written informed consent was obtained from the patients before participation in the study. There was no funding used for the study. The study was not registered with a publicly accessible clinical trials registry as it was a non-interventional study.
Treatment-naive patients with oral cancer who presented to our head and neck surgical oncology OPD with an Eastern Cooperative Oncology Group (ECOG) performance status (PS) of 2 or less and who consented to participate in the study were included. Patients aged less than 18 years, and those with a prior history of cancer were excluded.
The primary objective of our study was to determine the factors associated with delayed presentation of patients with oral cancer. Secondary objectives included an assessment of the clinical symptomatology, the extent of oral cancer awareness, the time to presentation to the primary physician and that to a specialized cancer center, and an assessment of the level of awareness regarding the management of oral cancer.
A questionnaire was administered by resident doctors in the head and neck surgical oncology OPD to the study participants. The questionnaire was explained to the patients in simple and vernacular language. Adequate time and a comfortable space were provided to them to fill out the questionnaire. The questionnaire included 31 multiple choice questions and could be completed within 7–8 minutes. Questions were designed to understand the demographic and socio-economic profile of the patient, their knowledge of risk factors and their symptomatology, attitude towards cancer management, access to cancer care, and knowledge about cancer treatment and its outcomes [Supplementary appendix 2]. The questionnaire was designed by the study team based on the variables to be estimated, and was based on problems faced practically while attending to patients. The questionnaire was not validated.
We see around 55–60 new patients with oral cancer in our OPD every month. Thus, in 4 months, we expected to see around 220–240 patients. Considering a screen failure rate of about 10%, we considered a convenience sample size of 200 patients to be appropriate for this cross-sectional study. A formal sample size calculation was not performed. The Statistical Package for Social Sciences (IBM Corp. Released 2011. IBM SPSS Statistics for Windows, Version 20.0. Armonk, NY: IBM Corp.) was used for data analysis. Simple descriptive statistics have been used to summarize the data.
| Results|| |
A total of 200 patients were included in this study [Figure 1]. Most of our study population belonged to the rural areas, with the majority (70%) being men. Median age of the study cohort was 52 years (range, 25–80). A total of 80 patients (40%) resided within 100 km of our facility, while the rest lived farther away. About 70 patients (35%) had at least one comorbidity. A total of 150 patients (75%) were educated up to primary school level, 44 (22%) were illiterate, and 6 (3%) were educated beyond primary school level. 150 patients (75%) were farmers or farmworkers, and the average monthly family income of 120 patients (60%) was up to ₹15,000.
Awareness about oral cancer
Although 170 patients (85%) had heard about oral cancer, only 30 (15%) knew someone with oral cancer. Fifty patients (25%) had a history of smokeless tobacco intake, 50 (25%) had a history of smoking, and 100 (50%) reported significant alcohol intake [Figure 2]. A total of 130 patients (65%) agreed to initiate lifestyle changes by quitting tobacco and alcohol consumption. Only 60 patients (30%) were aware of any cause of oral cancer. Ulcers were the most common symptom, reported by 100 patients (50%), followed by lump or swelling in 40 (20%), bleeding in 30 (15%), decreased mouth opening in 16 (8%), neck swelling in 12 (6%), and red/white patches in the mouth in 6 (3%) patients [Figure 3]. Eighty patients (40%) reported that they knew of a modality for diagnosing oral cancer. When asked about the type of modality for diagnosis, X-ray was the most common response, reported by 36 patients (18%), followed by clinical examination reported by 30 (15%), and computed tomography (CT) or magnetic resonance imaging (MRI) reported by 14 (7%) patients. All patients reported some symptom, because of which they presented or were referred to our facility, with ulcer in the mouth, swelling or lump, and neck swelling being the most common symptoms reported in 100 (50%), 50 (25%), and 16 (8%) patients, respectively.
Delay in presentation to a healthcare facility
The average duration of symptoms before seeking any medical advice was 120 days. Only 50 patients (25%) consulted an allopathic doctor at the first appearance of their symptoms, while for the remaining 150 (75%), alternative medicine practitioners were the first point of contact [Figure 4]. Among those who consulted with allopathic doctors, the majority 25 (50%) were seen by a dentist followed by the general physician in 15 cases (30%), 5 (10%) each showed to an ear, nose and throat specialist or surgeon; no one consulted a cancer specialist directly. The reason for the long delay in contacting any doctor after symptom onset was personal/social belief in 70 patients (35%), as most of them thought that their symptoms were trivial and temporary and would spontaneously subside; 60 patients (30%) attributed the delay to financial issues, 30 (15%) attributed it to fear of treatment, 30 (15%) to the lack of accessibility, and 8 (4%) to the lack of time to consult a physician [Figure 5]. The median time between the appearance of symptoms and cancer diagnosis was 5.5 months. For 140 patients (70%), the reason for not presenting to a cancer facility earlier was that they were never told by their primary physician that it could be cancer and that they were being treated symptomatically by their primary physician. These patients visited our center because of progression or lack of relief from symptoms. Eighty patients (40%) reported financial issues and a similar number reported fear of treatment to be the reason for this delay; lack of accessibility and lack of familial and social support were reported as reasons for delay by 70 patients (35%). Around 60 (30%) reported stigma related to cancer diagnosis and fear of being outcast by family and relatives as reasons for delay [Figure 6].
Perception of cancer and its treatment
Sixty patients (30%) in our cohort considered cancer to be curable and a similar number knew of at least one treatment modality for it. Surgery was the most common modality known to 120 patients (60%), followed by chemotherapy and radiation therapy known to 80 (40%) and 20 (10%) patients, respectively. Only 40 patients (20%) considered alternative (non-allopathic) treatment as ineffective for cancer treatment, while 80 (40%) considered non-allopathic treatment to be somewhat effective, and 80 (40%) thought it very effective, with 100 patients (50%) considering it even more effective than any allopathic modality. Regarding acceptance of different types of treatment, surgical treatment was considered as an acceptable option by only 70 patients (35%), while 70 (35%) preferred radiation therapy, and 60 (30%) preferred non-conventional treatment options. A total of 180 patients (90%) had taken alternative medication at some point of time after symptom onset. None of the patients thought that they could be cured of cancer and according to most of them, survival after cancer diagnosis could be from a few months to less than a year.
| Discussion|| |
This study stemmed from our inquisitiveness to understand the factors behind the delayed presentation of our patients with oral cancers to our healthcare facility located in rural northwestern India. We found a gross lack of awareness, fear, and multiple misconceptions about cancer, and its management in this rural population with an alarmingly high reliance on alternative medications for treatment. This study brings forth the problems present at the grassroots level with some actionable solutions, which, if implemented and practiced, may facilitate the presentation of patients at an earlier stage of the disease which might improve outcomes.
Our patient population was predominantly rural, and the majority of the patients were men. This could be because of higher tobacco intake among men or gender discrimination in healthcare access, as is evident from multiple previous studies,[4–7] and is in line with other studies from India.[8–11] India is the second-largest producer of tobacco in the world, and most of the tobacco produced is consumed within the country. According to recent data, currently there are approximately 266.8 million tobacco users in India (Global Adult Tobacco Survey-GATS, 2016–2017). More than one-third (35%) of adults in India use tobacco in some form. Multiple studies have established tobacco use as a risk factor for oral and oropharyngeal cancers,[14–16] and thus, its widespread use in the Indian population is a matter of great concern which needs to be addressed immediately in a well-planned and systematic manner.
Most of our study participants were educated up to primary school level, which is in line with the national educational average: this is dismal and requires urgent intervention. Lack of education could affect the level of awareness and recognition of cancer symptoms and treatment as shown in previous studies., What was distressing to note was that 60% of the patients had to travel long distances to reach a tertiary cancer care facility. Long-distance travel constitutes a major hurdle for access to any healthcare facility, more so in a rural setting with poor infrastructure and connectivity, complicated further by dependence on public transport. Most of our patients were farmers, and it was observed that in the sowing and harvesting seasons, their visits to healthcare facilities tended to decrease substantially; this could be a potential reason for delay and needs to be addressed specifically when developing an educational awareness program.
Although most of our study participants had heard about oral cancer, only 15% of them knew someone with oral cancer. What was alarming was that only 25% of participants knew that tobacco was a risk factor for oral cancer, despite multiple studies showing a very strong association of tobacco intake with cancer., About 50% of the study population revealed a history of tobacco intake in some form, but only 70% of them were willing to quit tobacco despite being diagnosed with cancer. This highlights a very crucial area for intervention in the form of public health education starting right from the school level, as the habit of tobacco use is acquired early in life often through imitation of peers and peer pressure. Various studies carried out across the country report that at least a third of school students aged less than 15 years have used some form of tobacco., Ulcer followed by lump was the most common symptom, but only 3% of the participants knew about premalignant conditions, which if picked up early could lead to cure. Thus, increasing awareness about premalignant conditions is essential to avoid presentation in advanced stages. In our study, only 15% of participants knew that cancer could be diagnosed on a clinical examination. This highlights the lack of awareness about the fact that something as simple, quick, and inexpensive as a clinical examination can pick up the disease in a large majority of cases, that too in early stages. What was even more distressing was the median lag time of 4 months between symptom onset and consultation with a healthcare worker. It is well known that oral cancers progress rapidly, and upstaging in this lag time adversely affects outcome, sometimes even transforming a curable disease to an incurable one. Even when seeking medical attention, only 25% of the patients consulted an allopathic doctor and the rest consulted an alternative medicine practitioner. This could have further increased the lag time between symptom onset and effective management. Moreover, none of the patients consulted a cancer specialist unless they were referred to one. Only 10% of the participants consulted an ENT specialist, while the majority consulted a general physician or a dentist; this could have led to a delayed detection and presentation in advanced stages. It is known from previous studies in India that 60%–80% of patients present with advanced-stage disease as compared to 40% in developed countries., Presentation at a later stage translates into decreased overall survival. Early detection can not only help improve survival, but also decrease the cost and morbidity associated with cancer treatment.
In our study, most patients believed that their symptoms were trivial and would subside on their own, and this was the most common reason for delay in seeking consultation. A significant proportion of our study participants delayed seeking consultation due to financial issues. Fear of treatment, lack of access to quality healthcare, and time constraints were other major hurdles reported. This suggests that the problem of delayed presentation can be addressed by increasing awareness about oral cancers and its symptoms, and educating the general public as well as primary healthcare physicians about the importance of oral examination and oral self-examination. Other approaches that could help include educating the masses about the curability of early-stage disease, addressing the stigma associated with cancer, strengthening primary healthcare facilities, and improving their accessibility and visibility. In our study, the median time between symptom onset and cancer diagnosis was 5.5 months, and most of the patients reported that they were not told by their primary physician about the possible diagnosis of cancer and were being treated symptomatically. About half of our study participants believed that cancer was contagious; such beliefs could lead to isolation of and discrimination against patients by members of society and sometimes even by their peers or family members. Only one-third of our study population believed that cancer could be cured; this explains their reluctance to be evaluated Less than one-third of the study population knew about any modality to treat cancer. Almost 80% believed that alternative therapies were at least somewhat effective for treatment of cancer, and this led to substantial delays in their presentation to a cancer care facility. Moreover, half of the patients believed that alternative therapy was better than allopathic treatment, and almost all of the patients had tried some form of non-conventional alternative treatment before coming to our cancer care facility. None of the patients believed that long-term survival was possible after a diagnosis of cancer.
The limitations of our study include the small sample size and lack of follow-up assessment. Future studies with larger sample sizes should focus on developing a structured teaching and counselling module based on the results from our study using a wider general population to target these myths and apprehensions.
| Conclusion|| |
Our study shows that a gross lack of awareness and multiple misconceptions prevail in the rural population. Increasing public awareness about oral cancer, training primary healthcare workers to pick up on early signs of oral cancer, promoting tobacco cessation activities, and teaching oral self-examination and its importance to people can help tackle the problem of delayed presentation of oral cancers.
Data sharing statements
Individual deidentified participant data (including data dictionaries) will not be shared.
To all my patients from whom I have learned the science and art of medicine.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| Supplementary Appendix 1: Study protocol|| |
Impact of Demographic factors on delayed presentation of oral and oropharyngeal cancers: An investigative report from a rural cancer centre
PI- Anshul Singla, Associate Professor Dept. of Head and Neck Surgical Oncology, HBCH, Sangrur
Co-PI-Dr Alok Goel, Associate Professor Dept. of Medical Oncology, HBCH, Sangrur
Co –Investigator-Dr Shivani Jain, Junior resident, Dept. of Head and Neck Surgical Oncology, HBCH, Sangrur
Co-Investigator –Professor, Dept. Of Community Medicine, Rajendra Medical College, Patiala
| Introduction|| |
India constitutes one-third of oral cancer cases in the world. Oral cancer is the most common cancer in men and the second most common cancer overall in the country. It is also the second most common cause of cancer mortality, second only to breast cancer as per GLOBOCAN 2018 data, leading to more than 72,000 deaths annually.
The majority of these patients presenting to specialized cancer centers are in advanced stages, that is, stage III or stage IV, in spite of the fact that recognizable symptoms appear early in oral and oropharyngeal malignancies. Out of the ones presenting, few patients can be given curable treatment and others have to be rendered palliative treatment because of their advanced stage at presentation. Even the ones who are offered curable treatment have to undergo extensive surgical resection and complex reconstructions, the result of which is decreased quality of life, increased morbidity and decreased survival.
There can be various factors leading to delayed presentation at a specialized cancer centre related to the patient, the primary physician, community belief, culture, awareness, etc., If such factors can be recognized and intervened appropriately, it can result in early presentation and diagnosis of cancers and timely management, ultimately improving the prognosis of such patients. This is more relevant in rural India, where the education and socio-economic status of patients is poor, resulting in false beliefs and low levels of awareness.
Till date, only very few such studies have been conducted in India, out of which none have addressed the rural population in particular. Moreso, data on oropharyngeal cancers is very limited in this aspect.
Thus, we aimed to conduct this study to find out reasons for delayed presentation of oral and oropharyngeal cancers to our rural cancer centre. This will help us to propose interventions to prevent such delays, thus improving patient outcomes.
| Aims and Objectives|| |
- To understand the socio-demographic profile of oral and oropharyngeal cancer patients presenting to head and neck cancer OPD
- To study the level of awareness of patients of oral and oropharyngeal cancer presenting to head and neck cancer OPD
- To find out the reasons for delay in presentation to cancer center
- To create awareness on early recognition of symptoms of oral and oropharyngeal cancers
- To counsel the patients regarding the importance of early consultation after appearance of symptoms
| Inclusion Criteria|| |
- Patients presenting to head and neck OPD with oral or oropharyngeal cancers
- Treatment-naive patients
- Patients consenting to participate in the study
- Eastern cooperative oncology group (ECOG) performance status (PS) of 2 or less
| Design of Study|| |
Cross-sectional questionnaire-based study
| Material and Methods|| |
It was a questionnaire-based cross-sectional study which included patients having oral or oropharyngeal cancer who presented to the head and neck surgical outpatient department (OPD) at Homi Bhabha Cancer Hospital, Sangrur. We planned to enroll 200 patients in this study.
A questionnaire-based survey was carried out which included multiple choice questions to understand the demographic, socio-economic profile of each patient, their awareness about risk factors, symptomatology of cancer, access to health care, knowledge about cancer treatment and its outcomes.
The questionnaire was administered by residents after taking informed consent. Any doubts in the understanding of the questions was explained in simple and vernacular language to them. Adequate time and a comfortable space were provided to fill the questionnaire.
Excluded from the study were individuals less than 18 years of age, those with ECOG PS >2, those with a history of cancer, or those who were unwilling to participate in the study.
Statistical Package for the Social Sciences (SPSS version 20) software was used for data analysis. Continuous variables were described using median with interquartile range. Sample size calculation was not done for this study. The study was conducted according to various ethical guidelines, including the Declaration of Helsinki.
Variables to be estimated:
- Socio-demographic variables such as age, gender, occupation, education level, income, comorbidity, addictions
- Clinical symptomatology such as presenting symptoms, and stage of disease
- Variables to assess oral cancer awareness
- Time to presentation to primary physician and specialized cancer center
- Reasons for delay in presentation
- To assess awareness about oral cancer management and its acceptance
Benefits of this study
This study helps in understanding the factors that are responsible for delay in presentation of these patients for treatment. Based on the findings, appropriate interventions can be planned and implemented, thus allowing early diagnosis and treatment, thereby leading to improved outcome for these patients.
This study comes with minimal, if any, risk to the patient and has far-reaching beneficial effects on the community at large.
| Appendix|| |
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[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6]