Table 2 shows the association of various significant factors with the delay in presentation, diagnosis, treatment initiation and completion. On univariate analysis age greater than 50 years, absence of a prior gynaecology check-up, ignorance about abnormal bleeding as a red flag sign of cancer and “quack” consultations have been associated with delay (1) Consultation with quacks, monetary issues and lack of insurance schemes have been associated with delay (2) Age greater than 50 years, monetary issues and referral to higher diagnostic centers were associated with delay (3) Literacy, apprehension about the disease and prognosis and lack of insurance schemes were associated with delay (4) Multivariate analysis results were in concordance with univariate analysis.
The median total diagnostic delay, patient delay, health care provider delay, treatment initiation delay and completion delay was 68 days, 60 days, 7 days, 28 days and 56 days. Major factors responsible for the various delays included low socioeconomic status, dismal screening results, diverse geographical terrain of the region, decreased literacy and awareness.
It is well known that the most important prognostic indicator of cervical cancer is the stage of the disease. While screening is the mainstay of cervical cancer elimination, we should also prioritize reducing the time interval between onset of symptoms and completion of treatment to maximize the overall survival of patients. In our study we observed a prevalence of delayed diagnosis as high as 52% which is higher than reported in other studies. This is an expected observation keeping in line with the lower socioeconomic and cultural differences between various geographical regions. The North Eastern part of India is a more difficult-to-access region given its rugged terrain however the situation is improving due to improved road and train services over the past few years.
When we compared the various time delays in other studies we found similar results were reported by Panda et al.wherein they studied the delay in presentation in Orrisa (another state of India). Somanna et al. reported the delay in presentation and healthcare delay was 80 and 36 days respectively. A waiting period of greater than 60 days from diagnosis to treatment and 60 days or more to the initiation of treatment were associated with poorer survival outcomes. We observed only 40% of the patients had a short delay in total diagnostic delay compared to a study by Ferreira et al. where they observed 90% of women had a diagnostic delay of more than 60 days.
Factors which significantly influenced the delay in our study were poverty, non-adherence to cervical screening programmes due to lack of awareness, profound fear when diagnosed with cancer and seeking help from quacks. It is well known that improved education status is associated with better awareness to seek early treatment when diseased. This was shown in various studies where illiterate patients had longer diagnostic delays.
Cervical cancer is a preventable disease with well-established screening guidelines. It is extremely disheartening to note that none of the 101 patients in our study ever heard of such a screening test leave alone undergoing such a test. Ouasmani et al. showed routine screening in addition to picking up pre-malignant lesions also reduces the delay in presentation of cervical cancer. This was also shown in a study by Fariba et al. where non-screened women had delayed diagnosis of cervical cancer. It is important to highlight the importance of per-speculum examination in patients presenting with foul-smelling vaginal discharge or abnormal bleeding as ignoring this vital examination step is a well-known cause of delayed diagnosis at the level of health care provider. It is important to improve awareness amongst the public about cervical cancer in light of our findings which show 75% of the patients have no knowledge about the warning signs of cancer. Studies have demonstrated the importance of apt public awareness in shortening patient delays in accessing healthcare. Poor knowledge and awareness breed an environment of misguided information from quacks and untrained physicians who provide over-the-counter medications without proper assessment of the patients. We observed 83% of our patients had consulted a quack and were falsely reassured about their health status thereby contributing to delayed diagnosis even after they sought help from a healthcare professional. This worrisome aspect has to be dealt with as it is an indicator of poor trust issues between the patient and the doctors. Various studies also observed this trend wherein the diagnostic delay ranged from 20 to 84%.
It was also noted in our study that patients also hid their symptoms from their family members till a date that it became unbearable for them. This is due to a deep-seated fear of cancer and fear of being abandoned by the family members. Changing family values and adoption of a Western lifestyle which includes the “nuclear family concept” have a big role to play in this regard. Most of the attendants lived in far-off cities in search of work and were in the dark regarding the disease status of the patients. In an era wherein radiotherapy and surgical techniques are being updated to the highest order it is important to first spread awareness that cancer is treatable if not curable.
Certain patterns of causes of delay were observed in our study. Monetary factors were not a cause of concern for patients when they come to the hospital seeking help however once treatment starts patients without the insurance schemes feel the heat of the expenses. Similarly quacks were responsible for a significant delay in presentation and diagnosis however once treatment started they were not found to be significant for delay 3 and 4. Improving literacy, better awareness generation and counseling will go a long way in ensuring the patients are compliant to the treatment.
Insurance schemes and payment of medical expenses depend on the state government policies. Unlike certain countries like Brazil where public health care is universal and covers 70% of cervical cancer treatment, we have the Ayushman health care services wherein the state provides free services for surgery, chemotherapy or radiotherapy for people with an annual income less than 2.4 lakh Indian rupees. However these schemes do not cover for initial diagnostic modalities because of which patients are at a loss. Earlier patients were referred to higher diagnostic centers for advanced imaging like positron emission tomography (PET). However recently we have started offering PET scans at a subsidized rate within the institution to improve the health care rendered to patients. Numerous other provisions for latest diagnostic machinery and health schemes are in the pipeline. We hope in the future we would be able to further reduce the various delays once these schemes come into play.
While there has been commendable work done in cervical cancer screening, it has not found to percolate to the lower strata of the population. We recommend conducting of awareness campaigns using local language and relevant cultural contexts to inform people about specific health conditions. Involvement of local community leaders, local organisations, mass media like newspaper health ads and use of television and radio dissemination of information can help in this regard. Focusing attention towards preventable cancers as a part of educational syllabus at school level can also help sensitise people. Screening facilities for cancer should be available to people are at a subsided rate at all medical healthcare facilities. Opportunities to screen relatives of patients should also be promoted.
This is the first study investigating the extent of delay in cervical cancer presentation, diagnosis and treatment in the North Eastern part of India. It was a prospective study hence the follow-up was rigorous and comprehensive analysis was possible regarding the various causes of delay which were unique to North East India. The study has its limitations attributed to the smaller sample size, performed at a single centre which may result in a selection bias.
Similar prospective local studies should be undertaken to accurate assess the particular needs of each region to enable the administration to work on those factors.
