Abstract
In cancer patients early institution of therapy placed a very important role and delay in the diagnosis and treatment can cause catastrophe. Affirm step to cut shot this delay requires detailed information about each step of patient referral journey and for fulfillment of above aim, we interviewed 101 patients, to calculate the elapsed time at each step. Result revealed that onset of symptoms to median time of presentation to general practitioner is 20 (9 - 28) days, time consumed in state based hospital is 100 (15- 167) days while in Delhi based hospital is 56 (18 - 100) days. Higher cure rate (38.2%) in patients presented within 3 months of development of cancer symptoms then those presented late. Study concluded that primary physician and all the referral hospital attributed important role in early diagnosis and treatment of cancer.
Introduction
Ensuring timely availability of adequate health care is important in proper treatment of disease. At times, delay in providing care at the right time may lead to poor outcome as in cases of malignancies. Evidence affirms that institution of therapy at an early stage can be curable or improves survival in certain malignancies such as breast carcinoma, 1,2 thyroid carcinoma, 3 testicular carcinoma, 4,5 cervical carcinoma, 6 Hodgkin lymphoma, 7,8 and so on. Unfortunately due to the delay in diagnosis and treatment, many cases of cancer presents at late stage and thus only palliative treatment is offered. Such delays may occur because of physician- or patient-related factors. 9 Hence, to understand the factors for such delays in the Indian scenario, we conducted a study on patients with cancer at our cancer center using an interview technique and evaluated the patient journey from start of symptoms till he or she received appropriate treatment. This was done with the aim of improving the flow of patients and shortening patient journey time so that the best use of hospital resources, staff, equipment, and beds can be done for the maximum benefit of the patient.
We walked over each step of journey, identified where the delays occur, collected relevant data, and tried to explore the possible efforts that could be made out in order to improve the patient journey. The improvement should be in terms of reducing the time span, expenses, psychological trauma, and suffering in patients, hence supporting them in the fight against this lethal illness.
Objective
To calculate the delay (at each level) between the first presentation of symptoms and receiving adequate treatment. Essence of delay over outcome of disease. To catalog the causes of this delays. To explore the various strategies for reducing this delay.
Methods
This prospective observational study was done after clearance from the institute’s ethical committee and obtaining patient consent. We included all newly diagnosed patients with cancer who visited our Pain and Palliative Care Clinic of Dr. B.R. Ambedkar Institute Rotary Cancer Hospital (IRCH), All India Institute of Research and Medical Sciences (AIIMS) during the 1-year period from January 1, 2011, to December 31, 2011. Patients were randomly enrolled based on computerized data from the IRCH hospital admission registry (HDR). We included 101 patients with cancer diagnoses listed in the registry during the study period, that is, excluded those with a recurrent cancer or with previous cancer. Patients were given a questionnaire from a pro forma to fill out and were followed up till 6 months during each visit of the patient to the pain and palliative care outpatient department (outdoor). It was filled in the patient’s own language. Data were evaluated in the form of median, range, and percentage.
The format of the pro forma explains: the time elapsed from first presentation of symptoms to consultation with general practitioner (GP; patient interval); the time spend at each level (primary or secondary or tertiary level of hospitals); patient already diagnosed correctly before reaching IRCH; total number of patients diagnosed in IRCH; time elapsed in making diagnosis and commencement of treatment in different departments of IRCH; disease status at the time of presentation to IRCH; number of patients who are already in the advanced stage of the disease where there is no treatment option left and the number of patient referred to pain and palliative department of IRCH for pain relief and palliation of symptoms; causes of delay in getting the right treatment; and follow-up
Statistical Analysis
For the calculation of different time intervals (from first symptom to the start of treatment), the term delay is used. The numbers of patients are denoted as percentage, and delay data are presented as means and standard deviations. Due to the skewed nature of some of the distributions, medians and interquartile ranges (IQRs) are also presented for completeness. The t test was used to for comparison, since data are large enough and P value of >.05 was used to signify statistical significance. Data were analyzed using Stata software, version 11.
Results
A total of 101 patients were interviewed, in which 58 were male and 43 were female. Of the patients, 36 were educated (at least elementary) and 65 were uneducated. In all, 30 patients were Delhi based, and the rest were from various other states. Detailed interview revealed various pathways of patient’s journey (Figures 1 –3).

Flowchart of a patient’s journey when a GP was involved. PreGP indicates having symptoms till first presentation to GP, GPPreSH, time interval in reaching state hospital from GP; GPPreDH, time interval in reaching Delhi-based hospital from GP; PreSH, having symptoms till first presentation to state-based hospital; PreDH, having symptoms till first presentation to Delhi-based hospital; PreIRCHSH, time interval in reaching IRCH from state-based hospital; PreIRCHDH, time interval in reaching IRCH from Delhi-based hospital; GPPreIRCH, time interval in reaching IRCH directly from GP; DGP(I), time consumed in physician treatment (incorrect diagnosis made); DGP(C), time consumed in physician treatment (correct diagnosis made); DSH, delay or time consumed at state-level hospitals; DDH, delay or time consumed at Delhi-based hospitals; DIRCH(S), time consumed at IRCH surgery department (from diagnosis to commencing the treatment); DIRCH(MO), time consumed at IRCH medical oncology department (from diagnosis to commencing the treatment); DIRCH(PPC), time consumed at IRCH pain and palliative care department (in commencing the treatment); DIRCH(RT), time consumed at IRCH radiation oncology department (from diagnosis to commencing the treatment); IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital; GP, general practitioner .

Flowchart of a patient’s journey when GP is not involved. PreGP indicates having symptoms till first presentation to GP, GPPreSH, time interval in reaching state hospital from GP; GPPreDH, time interval in reaching Delhi-based hospital from GP; PreSH, having symptoms till first presentation to state-based hospital; PreDH, having symptoms till first presentation to Delhi-based hospital; PreIRCHSH, time interval in reaching IRCH from state-based hospital; PreIRCHDH, time interval in reaching IRCH from Delhi-based hospital; GPPreIRCH, time interval in reaching IRCH directly from GP; DGP(I), time consumed in physician treatment (incorrect diagnosis made); DGP(C), time consumed in physician treatment (correct diagnosis made); DSH, delay or time consumed at state-level hospitals; DDH, delay or time consumed at Delhi-based hospitals; DIRCH(S), time consumed at IRCH surgery department (from diagnosis to commencing the treatment); DIRCH(MO), time consumed at IRCH medical oncology department (from diagnosis to commencing the treatment); DIRCH(PPC), time consumed at IRCH pain and palliative care department (in commencing the treatment); DIRCH(RT), time consumed at IRCH radiation oncology department (from diagnosis to commencing the treatment); IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital; GP, general practitioner.

Flowchart of patient’s journey when a patient reaches IRCH directly. PreGP indicates having symptoms till first presentation to GP, GPPreSH, time interval in reaching state hospital from GP; GPPreDH, time interval in reaching Delhi-based hospital from GP; PreSH, having symptoms till first presentation to state-based hospital; PreDH, having symptoms till first presentation to Delhi-based hospital; PreIRCHSH, time interval in reaching IRCH from state-based hospital; PreIRCHDH, time interval in reaching IRCH from Delhi-based hospital; GPPreIRCH, time interval in reaching IRCH directly from GP; DGP(I), time consumed in physician treatment (incorrect diagnosis made); DGP(C), time consumed in physician treatment (correct diagnosis made); DSH,delay or time consumed at state-level hospitals; DDH,delay or time consumed at Delhi-based hospitals; DIRCH(S), time consumed at IRCH surgery department (from diagnosis to commencing the treatment); DIRCH(MO), time consumed at IRCH medical oncology department (from diagnosis to commencing the treatment); DIRCH(PPC), time consumed at IRCH pain and palliative care department (in commencing the treatment); DIRCH(RT), time consumed at IRCH radiation oncology department (from diagnosis to commencing the treatment); IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital; GP, general practitioner.
Patients come to IRCH by 3 pathways (Figures 1 –3), and the time interval of reaching IRCH varies in these pathways (Tables 1 and 2).
Time Interval Delay (in Days) in Various Referral Pathways.a
Abbreviations: Avg, average; DGP(I), time consumed in physician treatment (incorrect diagnosis made); DGP(C), time consumed in physician treatment (correct diagnosis made); DSH, delay or time consumed at state-level hospitals; DDH, delay or time consumed at Delhi-based hospitals; GP, general practitioner; GPPreSH, time interval in reaching state hospital from GP; GPPreDH, time interval in reaching Delhi-based hospital from GP; IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital; PreGP, having symptoms till first presentation to GP; PreIRCHSH, time interval in reaching IRCH from state-based hospital; PreIRCHDH, time interval in reaching IRCH from Delhi-based hospital; GPPreIRCH, time interval in reaching IRCH directly from GP.
a All intervals are medians unless otherwise stated.
Diagnostic Delays in (Mean and Median) Various Pathways (all Data in Days
Abbreviations: DGP(I), time consumed in physician treatment (incorrect diagnosis made); DGP(C), time consumed in physician treatment (correct diagnosis made); DSH, delay or time consumed at state-level hospitals; DDH, delay or time consumed at Delhi-based hospitals; GP, general practitioner; GPPreSH, time interval in reaching state hospital from GP; GPPreDH, time interval in reaching Delhi-based hospital from GP; IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital; GPPreIRCH, time interval in reaching IRCH directly from GP; PreGP, having symptoms till first presentation to GP, PreSH, having symptoms till first presentation to state-based hospital; PreDH, having symptoms till first presentation to Delhi-based hospital; PreIRCHSH, time interval in reaching IRCH from state-based hospital; PreIRCHDH, time interval in reaching IRCH from Delhi-based hospital; std deviation, standard deviation; std error, standard error.
System delay is the time interval between the first contact with GP or primary referral center (state or Delhi-based hospital) and the contact with IRCH: When GP is involved: When GP is not involved: When primary referral center is not involved:
Statistical paired t test was used for comparing delay and outcome and revealed that when a patient is directly referred from state-based hospital to IRCH (tertiary referral center), he or she takes lesser time (P < .05) than when a GP is involved.
Also, statistically significant difference was observed (P < .05) in cases where a patient is directly referred from Delhi-based, secondary-level hospitals to IRCH than those who involved GP in this referral pathway.
Significant difference in time interval was also observed (P < .05) in cases where a patient is referred by a GP to state-based, secondary referral center and Delhi-based center, or when a patient is directly referred from state-based and Delhi-based secondary centers to IRCH. In both the conditions, shorter time is consumed in Delhi-based centers.
Patients who are correctly diagnosed by a GP and directly referred to IRCH consumed least time in this journey than those who roamed around GPs, then referred to secondary referral centers, and then finally referred to IRCH (P < .05).
Eventually, it can be inferred that shortest time is consumed when the disease is diagnosed at the GP level and the patient is directly referred to IRCH; while maximum time elapsed because of misdiagnosis or not achieving relief by receiving treatment from GP and the patient goes to the state-based hospitals, again wasting his or her valuable time and finally referred to IRCH.
After evaluation at various levels, different diagnoses were made. Very few patients were correctly diagnosed. Of the 101 patients studied, only 9 patients were correctly diagnosed by GP and directly referred to IRCH. These patients were the most fortunate ones because they presented at early stage and received timely treatment. In all, 12 patients were diagnosed at the state-level hospital and then were referred to IRCH for further treatment. Of all, 32 patients were diagnosed in Delhi-based hospitals (whether government or private) and then referred by the hospital or self-referred to IRCH. The remaining 47 patients were diagnosed in IRCH, of which 2 patients were found to have nonmalignant disease proven by biopsy report (diagnosis made out of IRCH), and 8 patients were reconfirmed as having malignancy after the biopsy report but the type of malignancy was different from that reported outside. Of the 47 patients diagnosed in IRCH, 11 patients reached advanced progressive stage at the time of presentation to IRCH and were only referred for pain and palliative care. In the IRCH, there was time variation in different departments in diagnosing and initiating the treatment (Table 3). In pain and palliative care department, least time was consumed in initiating the treatment in the patients, as the patients were already diagnosed. Due to various delays caused by different pathways, patients received different treatments. In some patients, curative treatment was not possible, and they remained the candidate of palliative care (Table 4), thus affecting the prognosis (Table 5).
Time Taken in Starting the Treatment by Various Departments (in Days) in IRCH.
Abbreviations: Avg, average; DIRCH(S), time consumed at IRCH surgery department (from diagnosis to commencing the treatment); DIRCH(MO), time consumed at IRCH medical oncology department (from diagnosis to commencing the treatment); DIRCH(PPC), time consumed at IRCH pain and palliative care department (in commencing the treatment); DIRCH(RT), time consumed at IRCH radiation oncology department (from diagnosis to commencing the treatment); IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital.
The Treatment Received by Patients at IRCH.
Abbreviations: Chemo, chemotherapy; radio, radiotherapy; IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital.
Patient Outcomes.
Of the 101 patients, 34 presented in IRCH within 3 months of development of first symptom and 67 after 3months. The outcome of disease is different in both the groups of patients. Data (Table 6) show statistically significant difference (P < .05) in the cure rate (high cure rate when presented in <3months).
Disease Status According to the Delay in Presentation to IRCH.
Abbreviation: IRCH, Dr B R Ambedkar Institute Rotary Cancer Hospital.
Minimum time is consumed when patients directly reach IRCH after consultation with GP, so the GP plays a very important role here in saving time. Early diagnosis and treatment can be achieved, when the patient is referred in the right direction.
A total of 18 patients could receive only palliative treatment in IRCH, including 11 patients from those 47 patients who were diagnosed at IRCH and the remaining 7 are those in which diagnosis were made out of IRCH.
These were mostly cancer of Pancreas; cancer of gall bladder; head and neck cancers; soft tissue sarcoma; melanoma.
Most common causes of the delay are due to lack of awareness about disease symptoms among both physicians and patients, improper guidance at initial evaluation phase of the disease, quacks and the use of alternative treatment modalities, poor socioeconomic status and other family concern, social responsibilities, nonuniformity of medical advice, overcrowded hospital, fear of treatment (surgery, chemotherapy, and radiotherapy), and so on.
Discussion
The median patient delay in our population-based study is 20 days (when contacted GP) and again 20 days (when contacted the state-based secondary referral hospital directly), which corresponds to the study by Hansen et al 10 in Denmark (total patient delay 21 days). But this duration is longer when compared to the study conducted by Arndt et al 11 in Germany (16 days), and this might be due to the difference in ethnicity, culture, socioeconomic status, education level, early screening, and other facilities available for the population of developed countries. Time duration reported in the study by Arndt et al 11 corresponds to the patients who were directly referred from Delhi-based secondary referral centers (15 days), and this is due to better screening facility or improved socioeconomic, education, and awareness level in metro-based population than that of rural- or other state-based patients. A longer time period was reported by Norsa’adah et al 12 in patients with breast cancer in Malaysia. In Malaysia, the median patient delay is 2 months. The major cause of this long duration in Malaysian females is due to the use of alternative therapy and negative perception of breast cancer treatment.
In our study, GP plays a very important role in deciding the time duration of patient journey; the median time a GP takes to correctly diagnose is 12 days (happened in only 9 patients), while the other patients wasted a median 50 days in roaming around the GPs. The study conducted by Hansen et al 10 in Denmark exhibited a median GP delay of 0 (0-2) day; this major difference in the time duration taken by GP to diagnose the disease might be because more than 98% of the Danish citizens are registered with a GP, and according to Hansen et al, 10 GPs function as gatekeepers to the rest of the health care system, carrying out initial diagnostic investigations and referring patients to hospitals or outpatient clinics, thus delegating further responsibility to secondary care. Danish GPs are required to maintain detailed electronic records; while in India, citizens are not registered with GP, and the GPs neither maintain detailed records of the patient nor face any audit or give any explanation about the diagnosis made and treatment given to the visited patients.
Study conducted by Allgar 13 in a UK population showed a trend similar to our study, in which patients that consulted their GP prior to diagnosis experienced considerably longer delays in total diagnosis than those who did not.
Median system delay is shortest (26 days) when the diagnosis was made by GP and the patient directly referred to IRCH. Longest time was consumed when patients were referred to state-based hospital by GP because from there patients are again referred to IRCH (median delay 196 days). Study by Hansen et al 10 mentioned that the median system delay is 55 days, and this duration is shorter than that reported in our study because in Denmark GP delay is very less 0 (0-2 days); but when correct diagnosis was made by qualified GP, the median delay in our study is only 26 days, again emphasizing the role of GP in cancer diagnosis.
In our study, the major part of delay is due to referral centers, and it is more than the delay caused by GP (median delay is 128 days when directly referred from state-based hospital and 105 days when referred from Delhi-based hospital). This finding is in accord with Hansen et al, 10 and Bjerager 14 showed that most delay in the diagnosis of cancer is attributed to system delay.
Longer delay affects the prognosis of disease. As in our study, patients diagnosed within 3 months have higher cure rate (38.2%) than those diagnosed after 3 months (11.8%; P < .05). Certain studies claimed the association between shorter symptom durations and better outcomes. The study conducted by Arndt et al 11 to exhibit patient delay and stage of diagnosis among patients with breast cancer observed that late-stage breast cancer was found in 51.6% of all the patients, and it tended to be more frequent among women with patient delay >3 months than among women who consulted a doctor within 1 month after the onset of symptoms.
Another study conducted by Machiavelli et al 15 to determine the relation between delay and survival in 596 patients with breast cancer confirms that patients who presented in less than 3 months of delay had a survival rate higher than those in the longer delay group.
Studies done by various authors (Facione, 16 Feldman et al, 17 Richards et al, 18 Kothari and Fentiman, 19 and Rossi et al 20 ) are consistent with the finding of early diagnosis and long survival. Survival among patient with cancer shows improvement if early diagnosis and treatment are instituted to the patient, shortening the length of patient journey. In this context, everyone, whether patient, GP, or referral centers, plays a very important role, but many hurdles either from the patient’s side or physician’s and hospitals’ side are present, causing delay in the diagnosis.
Lack of awareness 21 –24 about the sign and symptoms of cancer by the patient, his or her family members, and his or her treating doctor causes a catastrophe. Poor 25 –27 and uneducated patients residing in the remote 28 areas where qualified practitioners are not available and patients who take treatment from quacks or alternate medicine practitioner mostly encounter these conditions.
Sometimes, a patient does not care about the disease symptoms due to the family or social responsibilities 29 or even sometimes tries to hide his or her scenario from the family members due to the fear of treatment 30 or denial, 31 which leads to progression of disease.
Lack of knowledge in physician and consumption of time in laboratory and radiological investigations 32 or sometimes duplication of investigation after reaching another physician causes loss of valuable time of patient.
Nonaccessibility of medical facility in rural areas, overcrowded hospitals, long waiting list, lack of basic facilities in the hospitals, acute shortage of trained oncologist, high cost of treatment in private hospitals, malpractice of medical staff and practitioner, and nonuniformity of medical advice cause misguidance and loss of precious time for disease diagnosis in a patient with cancer.
As this study shows, there are many reasons for delay in seeking medical advice, and the following measures can be practiced to improve and hasten the journey. Educating all clinicians, including private practitioners, ayurvedic, homeopathic, or others, about the role of early diagnosis of cancer and early referral to the clinicians specialized in oncology to prevent patient suffering, thereby saving the patient’s life. Working at the grassroots level to create health care awareness among uneducated, poor, and rural-based people by the government, health care professionals, and nongovernmental organizations (NGOs), and there should be easy accessibility to and proper guidance by primary health service centers. Involving the local self-governments (Panchayat), social group, and societies in the provision of care in the locality and organizing camps time to time for free checkup and screening facility would be of great help. Establishing a cancer cell in each state with qualified and experienced doctors to create awareness and educate the general public about cancer, its various signs and symptoms and for regular audit and notification of cancer load in different zones would be of great help for the effective planning of strategies against various cancers.
Conclusion
Preventable delay in cancer diagnosis is mainly attributed to patients, GP (primary physician), and regional private and government hospitals. In Delhi-based private or government hospitals, the diagnosis of cancer is made comparatively earlier, and if a patient directly presents to IRCH after consultation with GP without going to other hospitals, it is likely that the time spent in making diagnosis will reduce. In summary, delay in cancer diagnosis is frequent. Reduction in diagnosis delay requires strategies to address multiple contributing factors. Awareness among the general population, teaching all the clinicians and combined contribution of government, local bodies, NGOs, medical, and paramedical staff can improve and shorten the patient’s journey time in diagnosis and treatment.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article
