Study population

The work on the project was done between February and September 2021. The project was approved by the Institutional Ethics Committee of the Indian Institute of Public Health–Hyderabad (Approval no.: IIPHH/TRCIEC/228 /2020; Dated: 11-12-2020). Data was extracted from published and grey literature to assess the magnitude of cancers, the determinants and barriers to access services, skills and workload, technology innovations in the continuum of cancer care, patient journey, palliative care services and successful cancer care interventions in other states in India and other parts of the world.

Assessment of magnitude of cancer

The estimated population of Telangana for 2022 to 2037 was retrieved from the ‘Report of the technical group on population projections, 2019’ [9]. For estimating the cancer-specific burden in Telangana, five-year prevalence of cancer in India (197.1 per 100000) as reported by Global Cancer Observatory, 2020 was considered (due to the absence of cancer-prevalence data for Telangana) [10]. New cancer cases per year from 2022 to 2037 was estimated using the estimates of cancer incidence (stratified by sex) from ICMR-NCDIR report on “Profile of Cancer & Related factor for the state of Telangana” [8]. Briefly, this report has used the data from the population based cancer registry, Hyderabad collected from the year 2014 to 2016 and calculated crude incidence rate and relative proportion of common cancers, separately for males and females. The authors have also estimated the number of new cancer cases for the year 2020 and 2025 using the crude incidence, age-specific cancer incidence for Telangana, and census data from the year 2001 and 2011 [8]. We used the projected cancer cases for the year 2020 and 2025 and calculated the relative annual percent change (APC) in new cancer cases separately for males and females. Using these relative APCs in new cancer cases (males: 2.4%; females: 2.58%), we calculated the expected number of new cancer cases from the year 2022 to 2037 for the state of Telangana.

We assumed the yearly cancer survival rate of 90% (conservative estimate) and cases surviving at the end of each year were estimated. These cases were considered to be the baseline for the subsequent year. For example, in the year 2022: at the beginning there were 74,356 cancer cases; the new estimated cancer cases are 50024; and yearly survival rate of 90%; Total cases surviving at the end of the year 2022 will be 111942. These 111942 cases surviving till the end of 2022 were considered as the prevalent cancer cases at the beginning of the year 2023.

To estimate the number of new cases for the common cancers including breast, cervical, oral, and lung cancer, we used the relative proportion (%) of these cancers to total cancer cases for the year 2022 [8]. Among females, relative proportion for the breast, cervical, oral, and lung cancers were 35.50%, 8.70%, 3.50%, and 4.10%, respectively. Among males, relative proportion for the oral and lung cancers were 21.21% and 10.90%, respectively. To project the numbers from these cancers for the next 15 years (2022 to 2037), we used the relative APC reported in the LANCET report. Among females, the relative APC for the breast, cervical, oral, and lung cancers reported are +1.58%, -1.65%, -0.0923%, and -0.42%, respectively [1]. Among males, the relative APC for the oral and lung cancers reported are -0.02% and -0.3%, respectively [1]. Survival rates for India were applied to determine magnitude of burden from each of these cancers in Telangana [11].

Assessment of magnitude of cancer workload, demand for human resources and equipment

To understand the workload for managing different cancers, the magnitude of cancers alone will underestimate the workload, as cancer patients have to make a number of visits for the surviving period with cancer for treatment and follow up. Workload at the tertiary cancer centers was estimated based on the site and stage of a cancer. Data on relative proportion of cases diagnosed in early and advanced stages was extracted from the Report on the National Cancer Registry Programme—2020 [2] as well as the ‘Profile for Cancer & Related factors for the state of Telangana Report’ [8], which present information on stages at diagnoses for specific cancers from hospital-based cancer registries across India and Telangana, respectively. Average number of visits required during each phase (pre-and post-diagnosis) were determined based on in-depth interviews with key stakeholders (oncologists) from public as well as private hospitals.

1. • Work-load was estimated using the formula:
2.  ○ Work-load = New case × average visits per case during cancer management
3. • Demand for human resources (cancer specialists) and equipment for the respective years was estimated using the formula [12]:
4.  ○ No. = Estimated new cases in the respective year × Norm per 1000 new patients

Assessment of chemotherapy, radiotherapy, and surgery requirements

Based on the estimated new cases in the respective years, cancer cases requiring chemotherapy, radiotherapy and surgery were calculated for three assumed scenarios: Scenario 1–55% of new cases requiring chemotherapy and/or radiotherapy and 45% of new cases requiring surgery; Scenario 2–60% of new cases requiring chemotherapy and/or radiotherapy and 40% of new cases requiring surgery; Scenario 3–65% of new cases requiring chemotherapy and/or radiotherapy; 35% of new cases requiring surgery. These scenarios were assumed based on the experiences shared by the Oncologists related to clinical extent of disease at presentation as well as the clinical extent of disease at presentation for cancers calculated from the Hospital-based registries across India [2]. More than 50% of the new cases of common cancers (oral, breast, cervical, lung, etc.) present in the loco-regional or distant metastasis stage (to the tertiary cancer care centers) [8].

• For each of the scenarios, total cases requiring chemotherapy was calculated using the formula:
  1. ○ Total cases requiring chemotherapy = [Estimated new cases in a given year × Percentage requiring chemotherapy]
• To calculate chemotherapy cycles per day, assuming six cycles are required per patient, the formula used was as follows:
  1. ○ Chemotherapy cycles per day = [New cases requiring chemotherapy in a given year × 6]/365
• Similarly, for estimating linear accelerators (LINACs) for radiotherapy sessions, we assumed 22 radiotherapy sessions per patient and 15,000 radiotherapy sessions per machine. The following formula was applied:
  1. ○ New LINACs for radiotherapy sessions in a given year = [Estimated new cases requiring radiotherapy in a given year × 22]/15000
• Onco-surgeries that are likely to be performed a month were estimated by applying the formula:
  1. ○ Onco-surgeries that are likely to be performed a month = [Estimated new cancer cases requiring surgery annually]/12

For the quantitative data such as cancer magnitude, workload, etc., we calculated proportion (as appropriate) and 95% confidence interval using Binomial Exact method using STATA version 14.2 (Stata Corp, College Station, TX, USA).

In-depth interviews with stakeholders

In-depth interviews using unstructured questionnaires were conducted with various healthcare providers (n = 25) serving at different levels of healthcare system in different capacities. The in-depth interviews (Descriptive Phenomenological Method of Qualitative Analysis) were mainly conducted to explore stakeholders’ perspectives on barriers and facilitators of comprehensive cancer care services in the state. The sampling for in-depth interviews was purposive and until themes were saturated (no new relevant knowledge was being obtained from new participants.) For healthcare providers group, we identified oncologists, medical officers at primary health centers (PHC), community health centers (CHC) and district hospital (DH), staff-nurses, auxiliary nurse and midwife (ANMs), mid-level health provider (MLHP), palliative care physicians, district programme officer of National Program for the Prevention and Control of Cancer, Diabetes, Cardiovascular diseases and Stroke (NPCDCS), and administrative secretary of a non-governmental organization. We selected these participants with the prior assumption that they share the common characteristics of serving patients diagnosed with cancer and have the potential to provide relevant and diverse information for the study objectives.

We also conducted the in-depth interviews with 17 cancer patients to explore their perceptions about cancer and existing cancer case services in the state of Telangana. We purposively selected 17 patients with different sites of neoplasms and different stages from three tertiary cancer care centers in Hyderabad to retrieve diverse and comprehensive information.

In consultation with cancer experts, we developed the interview questions and probes (interview guides) with special focus: to comprehend the cancer care pathways; to understand stakeholders’ perception about the stages of cancer presentation; reasons for delayed presentation to seek the treatment; causes of non-compliance to prescribed treatment, and system level barriers to access cancer care services.

A female researcher with specialization/master’s in public health had conducted the interviews using mobile phone (amidst the second wave of Covid-19 in India). The interviewer was not related to any of the interviewed participants. Prior to the interview, the interviewer completely explained the aims and objectives of the study and need for the interview recording, and clarified the participants’ queries (if there were any) to seek an informed verbal consent. At the time of each interview, interviewer made sure that the participants were alone in the room. Each interview (for healthcare provider as well as patient) lasted for 35 to 40 minutes. All the interviews were audio-recorded and transcribed into word files.

For the analysis of qualitative data, open coding was done for the word transcripts and themes were generated to explore participants’ experiences related to existing cancer care services for the state of Telangana. The frequencies of codes were used for further analyses using Microsoft Excel 2016 edition. Wherever required, we have provided the supporting quotations (in the result section) from different participants to improve the transparency of the findings.

Patient journey funnel development

We developed patient journey funnels for cancer care to highlight the levels of cancer care where leakages may occur. To develop this, a number of assumptions were made mostly based on the anecdotal evidence as the evidence-based findings were not available. We developed patient journey funnels for three common cancers together (oral, breast, and cervical) as well as separately for breast and cervical cancers. We developed the patient journey funnels for oral, breast, and cervical cancers because as a part of NPCDCS program the community level screening has been ongoing for these three cancers only since 2018 in the state of Telangana. We calculated patient leakages at various points and pathways across cancer care continuum such as (i) ‘Screened-positive to ‘diagnosis confirmation’; (ii) ‘Diagnostic confirmation’ to ‘treatment initiation’ and ‘treatment-completion’; (iii) ‘Screened-positive’ till ‘treatment-completion’; and (iv) ‘Confirmed-diagnosis’ till ‘treatment-completion’.

Delayed presentation

Non-compliance to recommended therapy

Oncologists mentioned that patients’ perception of cancer treatments and subsequent side-effects such as loss of hair during chemotherapy, propel them to default the initiated therapy and search for alternatives under the assumption that the recommended treatment is ineffective. Perceived barriers behind treatment defaulting include beliefs that cancer is incurable, or radiotherapy would result in burns or death of the patient and that cancer patients receiving treatment should consume only plant-based diet.

“Once patients return home and after the first cycle, they feel they are completely cured and don’t return for the next cycle on time, until the disease progresses and return when they start experiencing discomfort/difficulty.”–Provider 3

“Why did this come to me? No one in our family has this problem. Then why did this happen to me?”—[Patient: 5, Breast Cancer]

60% healthcare providers expressed psychological concerns such as anxiety as a cause for non-compliance. Social circumstances such as absence of family support and /or caregiver to accompany the patient and distant location of diagnostic and treatment centers were considered by providers as the causes for non-compliance to referral advice and recommended therapy. While 20% of oncologists perceived supportive care as a barrier, 66.7% of nurses along with both the palliative care physicians and the stakeholder from community-based NGO perceived it as a barrier for patients.

While cancer patients who experienced accommodation/shelter barriers had an average duration of 4.5 months from noticing symptoms to being diagnosed with cancer, this duration was only 1.5 months for those without such concerns. In comparison to patients without transportation barriers, those with such challenges had a longer interval between first identification of symptoms and receiving the confirmatory diagnosis.

System-level barriers

System-induced barriers mainly consisted of issues concerning infrastructure and workforce essential for service-delivery (including screening), in addition to ill-effects of the pandemic. Lack of systematic/ organized screening programs, effect of the COVID pandemic and inadequate infrastructure were the three most important barriers identified by health care providers (Table 3). Health care providers at the primary level identified challenges in the implementation of the NPCDCS program, which impacts cancer care services in Telangana: (i) ANMs in few districts not trained in screening for cervical cancer; (ii) Risk of missing cases at the primary level; (iii) Complex reporting formats; (iv) Multiple roles assigned to ANMs under the existing health care programmes (reproductive health programs and NPCDCS) in the scheduled work hours and (iv) Reduced workforce efficiency. At the primary level, screening activities have had been initiated in the state but ANMs only in certain districts were trained in early detection of all the three common cancers–breast, cervical and oral. Although, ANMs were conducting oral visual examination and clinical breast examination, training in VIA-based (Visual Inspection with Acetic acid) screening for early detection of cervical cancer hadn’t been completed in some of the districts.

Absence of histopathology labs, diagnostic equipment and chemo drugs for onco-specific treatment at the district level, including medical colleges in the public sector was identified as the principal barrier by providers at the secondary level. At the tertiary level, absence of designated areas for mixing of chemo-drugs and deficit of protective gear required during the process were some of the challenges faced by nursing personnel in the public sector. Despite the presence of shift-duties, due to extensive patient-volumes at the tertiary cancer centers in the public sector, provision of quality care was a perceived barrier. In addition to patient-care, administration of chemotherapy and diet-maintenance, nurses were engaged in documentation and ‘clerical work’, exacerbating the problem.

Patient mainly expect us to listen to their problems. But we can’t spend enough time with each of them.”–[Provider: 12]

System level barriers–Patient care pathways

Absence or ill-defined standardized pathways for cancer management (aimed to ensure timely diagnosis followed by prompt and appropriate treatment) was another important barrier highlighted by healthcare providers. Physicians at the primary healthcare level opined that referring to secondary level health centers is of limited use as there is a shortage of specialists and equipment for confirmatory diagnosis and staging. At the secondary level, medical officers and civil assistant surgeons highlighted the need for standard protocols for providers to ensure appropriate referral of screen-positives and suspected cases.

The required number of human resources and equipment for new cancer cases from year 2022 to 2037 are summarized in Fig 1. There is a steady increase in the requirement of human resources and equipment per year with rising number of new cancer cases. The requirement of human resources (such as Pathologist, Surgical oncologists, Medical oncologists, Palliative care specialists, Clinical pharmacists, Medical physicists, Radiation / Clinical oncologist, and Radiotherapy technicians) and equipment (Megavoltage teletherapy unit, Brachytherapy unit, CT simulator) will be approximately 13%, 28%, 44.7% higher in the year 2027, 2032, and 2037, respectively, compared the year 2022.

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Fig 1. Human resources and equipment requirement for new cancer cases from 2022–2037.

RT, radiotherapy; CT, computed tomography. Estimated new cancer cases for the year 2022, 2023, 2024, 2025, 2026, 2027, 2028, 2029, 2030, 2031, 2032, 2033, 2034, 2035, 2036, and 2037 are 50024, 51272, 52550, 53861, 55204, 56581, 57992, 59438, 60921, 62440, 63998, 65594, 67230, 68907, 70626, and 72388, respectively. The recommended norms per 1000 new cancer cases [12] for Megavoltage teletherapy unit, Brachytherapy unit, CT simulator, Pathologist, Surgical oncologists, Medical oncologists, Palliative care specialists, Clinical pharmacists, Medical physicists, Radiation / Clinical oncologist, and Radiotherapy technicians are 1, 1, 1, 2, 2, 2, 2, 2, 4, 5, and 12, respectively.

https://doi.org/10.1371/journal.pone.0278357.g001

Experts reported leakage of patients from screened positive till treatment completion in Fig 2. Major leakage of patient was highlighted between ‘screened-positive’ to ‘diagnosis confirmation’ step. Overall from ‘screened-positive’ till ‘treatment completion’, patient leakage varied from ~70% to 90%. The findings were relatively same when we developed patient leakage funnels separately for cervical and breast cancers (S1A and S1B Fig).

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Fig 2. Patient leakage at various stages in the continuum of cancer care for breast, cervical and oral cancer together.

*Extrapolated from percentage screened amongst 30–49 years age-group according to NFHS-5. †Based on age-truncated case detection rate of cancers (of all sites) in India [13]. ‡3610 (43%) seek diagnostic confirmation, assuming 50% of these to be cases. ‡Based on interviews with oncologists. (a) Total patient loss (from ‘screened-positive’ till ‘treatment-completion’ step) = [8396–552]/[8396] = 93.4%; (b) Assuming all ‘screened-positive’ seek ‘diagnostic-confirmation’ & 50% of which test positive, patient loss = [(8396/2) -552] / [8396/2] = 87.0%; (c) From ‘confirmed-diagnosis’ till ‘treatment-completion’ step, patient loss = (1805–552) /1805 = 69.4%.

https://doi.org/10.1371/journal.pone.0278357.g002

Delayed access to healthcare system

This study has identified several public health additions that should be addressed to further catalyze the prevention and control of cancers in Telangana. Stakeholders’ repeatedly observed the delayed presentation of cancer patients, which is the main reasons for the poor survival of cancer patients in India compared to their European counterparts. Most of the stakeholders reported lack of awareness or misconception about cancer, its risk factors followed by financial constraints. This finding is consistent with the results reported from Orissa (one of the neighboring state of Telangana) where researchers quantified the delays in care-seeking for signs and symptoms related to cancer [14]. They found that the first step in the cancer pathway-to-care was sharing symptoms or signs with family members and friends, and on average, took 271 days before steps toward diagnosis were taken [14]. Lack of knowledge, fear, and stigma related to cancer were highlighted as the key factors influencing this delay [14]. The cancer-literacy plays a key role in cancer outcomes and the government should consider investing significantly in cancer prevention education. Our findings also highlight a need: (i) To identify effective measures to promote cancer literacy across all stakeholders; (ii) To monitor and evaluate these strategies to achieve optimum benefit; (iii) To gain the in-depth understanding of socio-cultural factor such as myths, misconception etc. and other barriers to access cancer care services.

Stakeholders also mentioned about the financial constraint as one of the major deterrents for early access to healthcare facility; and therefore cancer prevention efforts should ensure access to affordable treatment. Cancer patients in India incur a heavy out-of-pocket expenditures [15,16]. Several central as well as state insurance schemes exist for cancer patients in Telangana to cover different aspects of cancer care. Some of the schemes are: Rashtriya Aarogya Nidhi Health Minister’s Cancer Patient Fund, The Employees’ State Insurance scheme, Telangana state Aarogyasri scheme, The Employees and Journalists Health Scheme of Telangana etc. that cover cancer care including specialized investigation as well as surgery, chemotherapy, radiotherapy, and palliative chemotherapy [17]. Government should facilitate the regular monitoring and evaluation of these schemes to ensure that these schemes cover all the components across cancer care continuum. The data from National Sample Survey- 75th round points to 70.3% of rural and 37.3% urban households in Telangana being covered under a government sponsored health insurance scheme. In case of hospitalized cancer patients, 83% were admitted at private hospitals from those hailing from rural Telangana as against 70% from those belonging to urban areas. Overall, 79% of hospitalized cancer patients in Telangana were admitted in private hospitals who might have incurred huge out-of-pocket expenses if had not been covered under any insurance scheme [18].

Patient leakage across cancer care continuum

This study also highlighted the variable leakage of patients across cancer care continuum with a major leakage happening from ‘screening’ to ‘diagnosis-confirmation’ stage. The loss of patients across cancer care continuum could be explained by factors operating at three levels: a) Reduced generation and dissemination of scientific knowledge regarding interventions, practices, and services; b) Inadequately prepared healthcare system delivering inefficient services; and c) Poor demand and uptake of cancer services due to social, cultural and economic factors. Rigorous research across these three levels could identify needs and gaps in the existing cancer care system, which if addressed, could catalyze the cancer care services in the state of Telangana. As suggested previously [19], WHO’s six building blocks of the health system framework consisting of: information, medical products and technologies, service delivery, health workforce, financing, and leadership and governance can be used to identify research needs to promote generation and dissemination of scientific knowledge regarding interventions, practices and services and strengthen healthcare system to deliver inefficient services. Additionally, poor demand and uptake of cancer services due to social, cultural and economic factors can be mitigated by tackling context-specific culturally relevant cancer prevention education.

The government of Telangana has been showing a strong commitment and taking major initiatives to strengthen the cancer care services across the cancer care continuum (S3 Table). Telangana government is attempting to develop a decentralized cancer care system comprising stakeholders from public, public-private partnership, and non-governmental institutes to provide equitable, accessible, affordable, safe, and effective cancer care services [20]. The government is planning to have an apex center in Hyderabad (Level-1 cancer care center with facilities for advanced diagnostics, treatment, research, and education) in addition to existing MNJ Cancer Hospital, Nizam’s Institute of Medical sciences, and several private hospitals in Hyderabad. Medical colleges at Adilabad, Nizamabad, Mahbubnagar and Warangal are being strengthened as Level-2 centres to provide diagnostic and treatment services in all modalities such as surgical care, radiotherapy, and chemotherapy. Diagnostic hubs at the level of district (Level-3 facilities) to provide definitive diagnostics, day-care and palliative therapy. The government is actively promoting the training of ANMs at sub-center (SC) and medical officer at PHC, and CHC, to efficiently utilize the extensive network of SCs, health wellness canters (HWCs), PHCs, and CHCs to create awareness and provide basic screening services to ensure early diagnosis and prevent future cases. Additionally, several initiatives (by governmental and non-governmental organizations) are being carried out to -raise cancer literacy, -address fear and stigma, -formulate, -disseminate, and -implement evidence-based guidelines for screening, diagnosis and treatment (including palliative care), -increase cancer care centers/institutes and -address shortages in healthcare facilities, medical resources, and healthcare professionals to ensure timely care-seeking and follow- up (S3 Table). These newer strategies should be accompanied with rigorous monitoring and evaluation tools to identify appropriate service delivery and financing models.

Strengths and limitations

For in-depth interviews, we have considered cancer patients (with different organ involvement and were at different stages) and healthcare providers working at different levels of healthcare to understand the complete dimension of cancer care services. This activity also helped us to develop patient leakage funnel in the absence of scientific evidence to appreciate at what levels of care patient leakages occur due to sub-optimal efforts and therefore required extra efforts.

The findings highlighted in this paper should be considered in the light of limitations. First, the number of patients as well as healthcare providers interviewed were very small. However, we attempted to achieve the thematic saturation and tried to gain diverse information. The in-depth interviews helped us to highlight the issues in cancer care (at patient- as well as system-level) which need urgent attention to strengthen the cancer care services; Second, we could not find out the existing number of human resources and equipment in the state of Telangana due to limited access to public as well private healthcare institutes; therefore could not calculate the exact current deficit of these resources. However, interviews with different stakeholders working at different level of healthcare gave us the glimpse of limited availability of these resources across various sectors. Third, we were only able to conduct phone interviews due to the COVID-19 pandemic, which may have led to altered responses. However, the interviewers were adequately trained before the interviews to extract relevant information from the stakeholders. Fourth, we made several assumptions and used anecdotal evidence to calculate the expected burden for cancer in next 15 years as well as to highlight patient leakages in cancer care funnel. Although we were unable to calculate the exact numbers for projections as well as patient leakages, we have delineated a dual nature of problem in cancer care: rising number of cases accompanied by poor availability and/or utilization of healthcare system.

Public health implications

Amidst globalization, many lower middle income countries (including India) are experiencing urbanization, dietary transition (from fruits and green leafy vegetables to calorie-rich and nutrient sparse fried food), and changes in environmental exposures which could increase the burden of overweight, obesity, and non-communicable diseases including cancer. Policymakers in India are struggling to identify optimal strategies to allocate limited resources for non-communicable diseases as these are already being utilized for communicable diseases and maternal and child health. This study very clearly highlighted the dual problems for cancer care: rising burden and delayed access to healthcare system, in a population which is experiencing epidemiological transition (due to aging and lifestyle changes). Additionally, we have highlighted the specific areas in the cancer care continuum which needs attention (for example more implementation research) to facilitate early diagnosis of cancer and thereby better prognosis. Improving the health of transitional population, for instance through cancer prevention and control will positively impact economic productivity in India. This will be particularly significant south Asians who tend to develop cancer at earlier ages (during their economic productive years).