Barriers and facilitators to cancer care in the Northeast region, India: A scoping review

Identifying relevant studies

A comprehensive search strategy was collaboratively developed by the study team to identify relevant studies addressing barriers to cancer care in the NER of India. This strategy was guided by the research question and involved identifying key concepts, followed by selecting pertinent keywords and controlled vocabulary (such as MeSH terms). Each concept of cancer care, including barriers and the context of Northeast India, was expanded into specific search terms to ensure comprehensive coverage. The electronic databases searched included EMBASE, PubMed, Web of Science, and Scopus, with the search limited to articles published in English (Supplementary Material). Given the limited published literature specifically focused on the NER, all available data related to barriers to cancer care in NER were included (Figure). This approach allowed for a broader contextual understanding and comparative analysis. The search was conducted between January 2010 and June 2025 and encompassed studies of various designs that discussed socioeconomic, health system, cultural, logistical, and geographical barriers, as well as facilitators to cancer screening, diagnosis, and treatment.

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Figure.

PRISMA flow diagram of the barriers to cancer care in the Northeast region.

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Study selection

The titles and abstracts of all retrieved records were independently screened by two reviewers using predefined inclusion and exclusion criteria on the Rayyan web-based systematic review platform.¹⁷ In cases of uncertainty, a third reviewer was consulted to reach a consensus. Full-text articles of potentially eligible studies were subsequently retrieved and assessed independently. The selection process is illustrated in a PRISMA 2020 flow diagram (Figure). Inclusion/exclusion criteria are listed in Supplementary Table II. Studies employing quantitative, qualitative, and mixed- methods designs were included, regardless of their quality. However, to provide context, we undertook a narrative appraisal of the included studies. To ensure a comprehensive review, the reference lists of all included articles were manually searched for additional relevant studies.

Charting the data

A standardised data charting form was developed by the review team to systematically extract and organise relevant information from the included studies. The following data items were charted: study title, authors, year of publication, location, study design, population, and types of barriers and facilitators reported (Supplementary Material).

Collating, summarising, and reporting the results

In the final stage of the review, we analysed the extracted data to map the barriers and facilitators related to accessing cancer care in the NER of India. Given the heterogeneity of study designs, populations, and outcomes reported, a quantitative synthesis was not feasible. Instead, we employed a narrative synthesis, consistent with scoping review methodology, which allowed us to map the breadth of evidence, identify recurring themes, and highlight knowledge gaps. The findings were synthesised and reported as a narrative summary, guided by thematic analysis.

Characteristics of the included articles

A total of 12 studies were identified (n=12)^8,18-28 Most of the data was from Assam (n=4), followed by Sikkim (n=2), Meghalaya (n=2), Manipur (n=1), and a multicentric study that included Assam, Arunachal Pradesh, Meghalaya, and Nagaland (n=3). No studies were reported from Mizoram and Tripura. The studies primarily focused on the following barriers: socioeconomic barriers (n=12), health system barriers (n=9), cultural barriers (n=8), logistical barriers (n=6), geographical barriers (n=6), and facilitators (n=2). Detailed study characteristics are shown in Table I.^8,18-30

Barriers and facilitators to accessing cancer care in the NER

Accessing cancer care in the Northeast is hindered by various multi-dimensional barriers. In this study, we have categorised these barriers into the following types: socioeconomic barriers,²⁸ health system barriers,³¹ logistical barriers,³² cultural barriers,³³ and geographical barriers.²⁸ Additionally, we identified facilitators operating at both the individual and system levels. The frequency of reported barriers and facilitators to cancer care across all studies is listed in Table II.

Socioeconomic barriers to cancer screening and treatment in NER

The reviewed studies highlight substantial socioeconomic barriers to cancer screening, diagnosis, and treatment in Northeast India. Low health literacy was consistently reported as a major challenge. In Sikkim, women with limited literacy struggled to recognise the importance of human papillomavirus (HPV) screening.¹⁸ Across Assam, Meghalaya, and Nagaland, only 21% of participants had heard of cervical cancer, and 43% knew the recommended age for screening.³⁴ Similarly, 80.6% of women in Sikkim were unaware of breast cancer risk factors, and fewer than half practiced breast self-examination (BSE), with awareness strongly linked to education and socioeconomic status.²⁸

Financial hardship further impeded access to timely care. In Assam, 69% cited cost as the primary barrier, resulting in delayed referrals and high out-of-pocket expenditures (OOPE) on travel, food, and treatment.^26,23 Comparable findings were reported in Meghalaya.²⁶ In Arunachal Pradesh and Assam, patients often sought treatment outside their states, incurring income loss and asset liquidation; many patients were unaware of state-supported cancer institutes until after incurring substantial costs elsewhere.²¹ Wealthier families also declined screening due to stigma and lack of awareness.²⁰ Fear, denial, and cost were cited by 92.9% who had never undergone screening.²² Notably, 74% of patients in Arunachal Pradesh and Assam initially accessed private facilities but later shifted to public hospitals due to escalating costs and delays.²¹

Health system barriers to cancer screening and treatment in the NER

Health system barriers included poor infrastructure, shortages of specialists, weak health communication, and inadequate financial protection. Awareness of services was limited: 9% of women in Assam, Meghalaya, and Nagaland were unaware of where screening was available,¹⁹ while only 2.5% in Arunachal Pradesh were aware that government hospitals provided screening.²² Frontline workers faced significant burdens. Accredited social health activists (ASHAs) in Sikkim dedicated considerable time to door-to-door counselling,¹⁸ while community health workers (CHWs) in Assam struggled with low incentives, weak supervision, and community resistance.²⁰ Infrastructure gaps, including a lack of diagnostic services, specialists, and inpatient facilities, compelled many patients to travel out of State.²¹ In Meghalaya, treatment delays, limited intensive care unit (ICU) availability, and disruptions during COVID-19 worsened outcomes.^26,27 Insurance coverage was often inadequate. In Assam, 62% reported insufficient coverage for diagnostics and treatment, while 81% stated that non-medical expenses, such as travel and lodging, were excluded. Additionally, 82% noted a lack of follow up from CHWs or non-government Organizations (NGOs).²³ Similar gaps were reported in Meghalaya and Arunachal Pradesh, where many patients faced financial hardship despite being insured.^26,21 Lack of proactive guidance from providers further discouraged screening and early help-seeking.²⁸

Logistical barriers to cancer screening and treatment in the NER

Logistical barriers included transport challenges, a lack of patient support infrastructure, and seasonal disruptions. In Sikkim, HPV self-sampling programs faced delays due to difficulties in transporting specimens from remote areas.¹⁸ In Assam, the absence of free transport limited timely access to diagnostic centres.²⁰ Monsoon-related floods disrupted access to healthcare, particularly in remote areas.²³ Accommodation shortages also hindered care. In Arunachal Pradesh and Assam, the lack of lodging near tertiary hospitals made it difficult for low-income patients to complete treatment cycles, leading to abandonment or interruptions.²¹

Cultural barriers to cancer screening and treatment in the NER

Cultural beliefs, stigma, and reliance on traditional medicine significantly influenced care-seeking. In Sikkim, women refused HPV self-testing due to fear of the sampling brush and discomfort with the process.¹⁸ In Assam, women often hesitated due to embarrassment, fear of hospitals, and stigma, which was frequently reinforced by family resistance.²⁰ In Arunachal Pradesh and Assam, many patients delayed biomedical care due to reliance on homoeopathy, Ayurveda, or herbal remedies, leading to late-stage presentations.²¹ Spiritual and cultural concepts such as bih and skai in Meghalaya influenced reliance on traditional healers.²⁶ Misconceptions were also widespread: in Assam, some believed cancer was caused by karma, evil spirits, or divine punishment, with fears that disclosure would ruin relationships (40%) or careers (56.2%).²² Oswal et al²³ reported that 56% of patients lacked psychosocial support and only half felt emotionally supported by providers.²³ Fear and low perceived need also contributed to limited breast self-examination (BSE) and screening uptake.²⁸

Geographical barriers to cancer screening and treatment in the NER

The NER’s terrain and remoteness created formidable access barriers. In Assam, poor road networks and difficult terrain restricted patient and provider mobility, particularly in rural and tribal areas.²⁰ In Arunachal Pradesh and Assam, patients travelled long distances over rough terrain for basic diagnostic services, incurring high travel costs.²¹ In Assam, 15% of patients delayed care due to geographical distance, further worsened by monsoon-related disruptions.²³ Access improved significantly when services were available nearby; 86.9% of respondents expressed willingness to undergo screening if facilities were closer.²²

Facilitators to accessing cancer care

Individual-level facilitators: Several individual-level enablers were identified, including personal motivation, family encouragement, health literacy, and trust in healthcare providers. In Sikkim, self-administered HPV testing improved participation by preserving privacy and reducing travel burdens, with family support further encouraging screening.¹⁸ In Assam, women were motivated by awareness of symptoms, prior experiences, trust in CHWs, and assurance of privacy and follow-up.²⁰ CHWs were more effective when incentivised, supported by peers, or when they had undergone screening themselves.²⁰ Positive attitudes toward cancer prevention were also reported. In Assam, participants believed in curability and emphasised early detection and counselling, with many supporting annual screenings and viewing care giving as a communal responsibility.²² Patient satisfaction was higher when healthcare providers communicated respectfully and clearly, especially when families were involved in home care and discharge planning.²³ Financial and emotional support significantly increased participation. In Assam, women receiving financial assistance were more likely to participate in screening [confidence interval (CI) 95%, OR 20.5], while favourable family attitudes improved uptake 31 times (CI 95%, OR 0.732).²⁴ In Manipur, health education interventions increased HPV vaccine acceptance from 61.5% to 88.6%, underscoring the importance of targeted awareness campaigns.²⁵

System-level facilitators: System-level enablers included community outreach, CHW engagement, and responsive service delivery. In Sikkim, ASHAs mobilised participation through counselling, pamphlets, and videos, integrating self-sampling into existing health days and utilising mobile technology to track results.¹⁸ Collaboration with panchayats, NGOs, and self- help groups fostered community ownership and engagement. In Assam, home-based screening, structured referrals, and teamwork among auxiliary nurse midwives (ANMs) and CHWs improved service delivery. Supportive supervision and recognition of CHWs strengthened community trust.²⁰ Educational campaigns and consistent follow up efforts significantly enhanced system responsiveness.²⁰ In Assam, public advocacy has called for increased government funding and equitable access.²² Patient satisfaction was further enhanced by efficient hospital registration, respectful staff, and responsive clinical care, despite the limited availability of psychosocial support.²³ Finally, financial and social support mechanisms enhanced screening participation in Assam,²⁴ while structured educational interventions in Manipur significantly improved HPV vaccine acceptance.²⁵