Sociodemographic characteristics and healthcare-seeking behaviour of patients with sickle cell disease: a cross-sectional study across five tribal districts in India

Abstract

Sickle 2007cell disease (SCD) is an inherited chronic blood disorder, with symptoms including anaemia, recurrent pain episodes and long-term organ damage. Approximately 1.2 million people in India are affected. Understanding the sociodemographic profile and health-seeking behaviour of individuals with SCD is essential for designing and implementing patient-centred care strategies. This study reports socio-demographic characteristics, living conditions and patterns of healthcare utilisation among individuals diagnosed with SCD in five tribal-dominant and underserved districts of India. Data were collected from 261 individuals diagnosed with SCD using a pretested, structured questionnaire administered through face-to-face interviews. Most participants (74%) learned about their SCD status through the public healthcare staff. A majority reported seeking care at primary or community health centres (69.7%), with smaller proportions attending tertiary-level government facilities (19.2%) and private hospitals (8%). A few participants (3.1%) have not sought treatment. Care-seeking behaviours in SCD vary across socioeconomic factors, including education, occupation, household income, housing type, health insurance coverage, and awareness levels, as reported in previous studies. These insights underscore the need for tailored interventions that address both healthcare access and the underlying healthcare-seeking barriers among the affected populations.

Introduction

Sickle cell disease (SCD) is a hereditary disorder of the blood, arising from a genetic mutation that alters the structure of haemoglobin. It is marked by persistent anaemia, recurrent episodes of acute pain, and progressive damage to multiple organs (Chakravorty and Williams 2015). The condition affects millions globally, particularly among populations of African, Mediterranean, Middle Eastern, and South Asian origin (Rees et al. 2010). Each year, an estimated 312,000 newborns worldwide are affected by SCD, including approximately 44,000 births in India alone (Piel et al. 2013a, b). In nations with limited resources and subpar healthcare systems, SCD is linked to a markedly lower life expectancy (Galadanci et al. 2014). Supportive and potentially curative therapies are part of the ongoing evolution of SCD management, due to the hereditary origin of the disease and the complexity of its pathophysiology (Adekile 2013).

To prevent and manage SCD and eliminate it as a public health problem in India by 2047, the Indian government launched the National Sickle Cell Anaemia Elimination Mission (NSCAEM) in 2023. Under the mission, the current focus is on screening, which is being conducted massively across the states (Government of India 2025). Though the people are diagnosed with SCD, the continuity of care is seldom maintained, which might be due to inherent health system-related factors and low health-seeking behaviour of the patients. The term health-seeking behaviour refers to actions undertaken by individuals. They perceive themselves as ill or experiencing a health problem, in pursuit of effective treatment. It is shaped by factors such as health-related knowledge, perceptions, socioeconomic constraints, the quality of available services, and healthcare providers’ attitudes (Wade and Halligan 2004). Additionally, healthcare provider attitudes, access to services, and treatment costs play key roles. High treatment costs, poor access to healthcare facilities, and delays in receiving care often discourage individuals from relying on public health services. As a result, many turn to alternative sources such as local pharmacies, informal drug sellers, traditional herbal healers, or spiritual and religious practices. The NSCAEM has prioritized population-level screening and early diagnosis. However, evidence on healthcare utilization following diagnosis, particularly with respect to continuity of care, treatment uptake, and service use, remains limited, especially in tribal-dominated districts. Understanding health-seeking behaviour beyond screening is therefore critical to inform effective implementation of the NSCAEM and to strengthen long-term care pathways for individuals with SCD.

Gaining a clear understanding of the social and demographic backgrounds of individuals affected by SCD is vital for tailoring interventions, optimising the allocation of resources, and shaping effective public health strategies (Santos and Gomes Neto 2013). As a hereditary blood disorder, SCD is closely intertwined with the socioeconomic context of patients, which can strongly influence disease management, care seeking and thereby the health outcomes (Nwabuko et al. 2022). Despite its importance, research exploring these determinants remains limited. This study aimed to describe the sociodemographic characteristics, living conditions, disease awareness, and healthcare-seeking behaviour of individuals with SCD in five tribal-dominated SCD-prevalent districts of India.

Methods

Study design and setting

This multicentric community-based, cross-sectional study was conducted in five SCD-endemic and predominantly tribal districts across India: Alluri Seetharama Raju (ASR) in Andhra Pradesh state, Mysuru in Karnataka state, Kandhamal in Odisha state, Chhotaudaipur in Gujarat state, and Udalguri in Assam state. Districts were selected based on documented SCD endemicity, a high proportion of tribal population, and operational feasibility, including the presence of functional health facilities and ongoing programme activities related to SCD. These districts represent the country’s geographical diversity. The details of these districts are available elsewhere (Babu et al. 2023a).

Study participants

Participants were recruited from the Indian Council of Medical Research (ICMR)-supported SCD registry and state-run health programmes (Babu et al. 2023b; Sharma et al. 2024). Individuals with homozygous SCD, confirmed by high-performance liquid chromatography (HPLC) or haemoglobin electrophoresis, were included. Patients of all ages who were willing to participate were eligible for the study. A total of 261 participants were included in the final analysis. These are the only available people through the registry in these districts. As this was a registry-based, community-level study conducted in selected districts, all available and eligible individuals with SCD were approached for participation, and a formal sample size estimation was therefore not undertaken. Thus, this approach allowed maximum coverage within the study settings. As participants were identified through existing registry and programme records, the sample represents individuals who are diagnosed and linked to healthcare services.

Data collection tool and process

Data were collected during June-July 2023, using a structured, pre-tested, interviewer-administered questionnaire developed by consulting the literature and brainstorming among researchers. The questionnaire was initially pilot tested with a small sample to ensure clarity and cultural appropriateness. The questionnaire was culturally adapted and translated into local languages. Interviews were conducted in participants’ households by trained field investigators, using the local language where necessary. The interviewer directly recorded all responses. The questionnaire covered key domains. These included: (i) Sociodemographic profile: gender, age, occupation, education, family type, and family income; (ii) Living conditions: type and ownership of house, cooking space, source of drinking water, toilet facility, and electricity; (iii) Health insurance: type of scheme subscribed to or lack thereof; (iv) Knowledge and awareness of SCD, and (v) Treatment-seeking behaviour and use of hydroxyurea. Field investigators received comprehensive training on interview protocols and ethical considerations. Principal investigators conducted random field verifications, reviewed filled questionnaires daily, and ensured consistent data quality throughout the data collection phase.

Data management and analysis

Data were processed in Microsoft Excel and analysed using SPSS version 26.0. Data validation checks were conducted to address inconsistencies and missing values. Descriptive statistics were used to summarise participant characteristics, living conditions, health insurance coverage, and awareness-related responses. The analysis was descriptive in nature and aimed to summarise patterns of sociodemographic characteristics and healthcare-seeking behaviour among the study participants. No inferential statistical analyses were conducted to examine associations between variables, due to the nature of the sample.

Ethical considerations

Ethical approval was obtained from the Institutional Ethics Committees of all participating institutions. Informed consent was obtained from all adult participants. For participants below 18 years of age, informed consent was obtained from a parent or legal guardian, and assent from the participant was obtained where appropriate.

Results

Sociodemographic characteristics

A total of 261 individuals with SCD were included from five districts. Females constituted a higher proportion (58.2%) of the study participants (Table 1). Over half (56.7%) were under 20 years of age, and a very few participants were aged 51 years or older (4.2%). Patient occupational engagement was relatively low. Most patients (60.5%) were not involved in any productive work. However, daily wage labouring (44.8%) and agriculture (31.4%) were the predominant occupations of the patients’ earning family members. Regarding education, 81.2% of the participants had some level of schooling. The nuclear family structure was the most common (69.4%). Annual household income varied, with 40.6% earning more than INR 60,000 (1 INR ≈ US$ 0.011) and 17.6% earning below INR 20,000 annually.

Table 1.

Sociodemographic characteristics of study participants

Sociodemographic characteristics	N = 261 Number (%)
Study district
Alluri Sitharama Raju district (Andhra Pradesh)	51 (19.5%)
Chhottaudepur district (Gujarat)	48 (18.4%)
Kandhamal district (Odisha)	69 (26.4%)
Mysuru district (Karnataka)	51 (19.5%)
Udalguri district (Assam)	42 (16.1%)
Gender of patients
Male	109 (41.8%)
Female	152 (58.2%)
Age (in years) of patients
< 20	148 (56.7%)
21–30	43 (16.5%)
31–40	38 (14.6%)
41–50	21 (8.0%)
≥ 51	11 (4.2%)
Occupation of patients
Daily Wage Labour	35 (13.4%)
Agriculture	15 (5.7%)
Paid Job	14 (5.4%)
Small business, artisan	7 (2.7%)
Home Maker	32 (12.3%)
Students/presently not working	158 (60.5%)
Occupation of primary earning member of the family
Daily Wage Labour	117 (44.8%)
Agriculture	82 (31.4%)
Paid Job	33 (12.6%)
Small business, artisan	7 (2.7%)
Home Maker	19 (7.3%)
Students/presently not working	3 (1.1%)
Education of patients
No Formal Schooling	49 (18.8%)
1–5 years of Schooling	73 (28.0%)
6–10 years of Schooling	100 (38.3%)
> 10 years of Schooling	39 (14.9%)
Family type
Nuclear	181 (69.3%)
Extended	78 (29.9%)
Living alone	2 (0.8%)
Annual family income (in Indian Rupees (INR)*)
Up to 20,000	46 (17.6%)
20,001–40,000	56 (21.5%)
40,001–60,000	53 (20.3%)
> 60,000	106 (40.6%)

*1 Indian Rupee (INR) = US$ 0.011

Living conditions

Housing quality and basic amenities varied significantly across districts. About one-third (35.2%) lived in homes with cemented floors and asbestos roofs, and 40.2% lived in mud houses. Nearly 95% of families owned their houses (Table 2). Cooking space was available within the home for the majority (56.7%). Drinking water sources showed geographic disparities. While 33.3% relied on borewells or hand pumps, others used public taps (30%), open wells (24.9%), or surface water sources such as streams or ponds (5.7%). Only 4.2% of households had piped water.

Table 2.

Living conditions of study participants

Living conditions	N = 261 Number (%)
Type of house
Mud house & thatched roof	14 (5.4%)
Mud house & asbestos/plastic/tarpaulin roof	46 (17.6%)
Mud house & tiled roof	45 (17.2%)
Cemented floors/walls & thatched roof	11 (4.2%)
Cemented floors/wall &Asbestos roof	92 (35.2%)
Cemented floors/wall & tiled roof	53 (20.3%)
Ownership of the house
Own	248 (95.0%)
Rented/Government/employer Quarters/Staying in another’s house	13 (5.0%)
Cooking space
Separate kitchen in the house	148 (56.7%)
Single room accommodation with cooking space	33 (12.6%)
In the living room/verandah	43 (16.5%)
Open space/outdoor	37 (14.2%)
Drinking water
Open well	65 (24.9%)
Bore well/Hand pump	87 (33.3%)
Household overhead tank	2 (0.8%)
Water stream/river/pond	15 (5.7%)
Public tap	79 (30.3%)
Piped water into the house	11 (4.2%)
Bottled/Processed water through reverse osmosis	2 (0.8)
Toilet facility
Own septic latrine	122 (46.7%)
Own Pit latrine	27 (10.3%)
Community toilet (paid)	2 (0.8%)
Open field defecation	110 (42.1%)
Electricity connection
Yes, metered connection	228 (87.4%)
Drawn from the street lines	7 (2.7%)
No connection	26 (10.0%)

Sanitation facilities were inadequate for a significant portion of households. While 46.7% had their septic latrines, 42.1% still practised open defecation, with the highest rates in Khandamal and ASR districts. In terms of electricity, 87.3% had metered connections.

Health insurance coverage

Health insurance coverage was highly variable. Overall, 49.4% of participants were covered under some insurance scheme (Table 3). Pradhan Mantri - Jan Arogya Yojana (PM-JAY) (Prime Minister’s People’s Health Scheme) or state-specific insurance programmes have covered these people, with the highest enrolment in Khandamal (87.3%) and ASR districts (90.1%).

Table 3.

Health insurance among study participants

Subscription to health insurance	N = 261 Number (%)
Not covered under any scheme	121 (46.4%)
PM-JAY/State health insurance scheme	129 (49.4%)
Not Sure/Not aware	11 (4.2%)

PM-JAY=Pradhan Mantri - Jan Arogya Yojana

Awareness and treatment-seeking patterns

Most participants (73.9%) were aware of their SCD status through the healthcare providers of the primary healthcare system, and about 26% were informed by researchers working in these districts (Table 4). Primary health centres/community health centres were the most utilised facilities for treatment (69.7%), followed by tertiary-level government hospitals (19.2%). A small number (3.1%) had never sought treatment.

Table 4.

Sickle cell disease awareness and healthcare details among study participants

Details of awareness and healthcare	N−261 Number (%)
Source who informed participant of disease status
Medical officer of the primary/community health centre	144 (55.2%)
Lab technician of the primary/community health centre	6 (2.3%)
Peripheral health workers	7 (2.7%)
Community health workers	36 (13.8%)
Staff of research project staff	68 (26.1%)
Source of treatment
Not gone anywhere	8 (3.1%)
Primary/community health centre	182 (69.7%)
Higher government hospital	50 (19.2%)
Private hospital	21 (8.0%)
Current treatment status
Continuing	227 (87.0%)
Discontinued	34 (13.0%)
Hydroxyurea use
Initially taken and continuing	174 (66.7%)
Initially taken and discontinued	71 (27.2%)
Never took	16 (6.1%)
Financial help from government due to sickle cell disease status
Yes, receiving	33 (12.6%)
Under process	31 (11.9)
Not receiving any	197 (75.5%)

Notably, 87% of respondents were undergoing treatment at the time of the survey. Hydroxyurea use was reported by 93.9% of patients, although 27.2% had discontinued it. More than 6% of patients had never consumed hydroxyurea. Government’s support to SCD patients was limited, with only 12.6% receiving assistance, and for another 11.9%, it is in process.

Discussion

This study provides a comprehensive overview of the sociodemographic profile, living conditions, health insurance coverage, and treatment-seeking behaviours among individuals with SCD across five tribal-dominated districts in India. Key findings reveal that participants largely belonged to socio-economically vulnerable groups. Although people largely relied on the government healthcare system, access to healthcare and healthcare-seeking behaviour remain limited.

The interpretation of healthcare-seeking behaviour in the present study was informed by established conceptual frameworks of healthcare service utilisation. Andersen’s Behavioural Model of Health Services Use explains that healthcare utilisation is shaped by multiple factors. These include predisposing factors such as age, gender, education, tribal affiliation, etc. It also includes enabling factors such as household economic status, insurance coverage, and accessibility of health facilities. In addition, perceived or evaluated need for care plays an important role (Andersen 1995; Andersen et al. 2007). In addition, broader social and structural influences operating at the community and health system levels were considered in line with the World Health Organization’s Social Determinants of Health framework. It emphasises the role of socioeconomic position, living conditions, and health systems in shaping health behaviours and access to healthcare (World Health Organization Commission on Social Determinants of Health & World Health Organization 2008). Within the Indian context, particularly in tribal communities, health-seeking behaviour is further influenced by the health system’s readiness, trust, and accessibility, as well as by sociocultural factors operating at the community level. The literature from India suggests how these structural and contextual factors shape patterns of healthcare utilisation and healthcare-seeking behaviour among marginalised populations, such as Indian tribes (Baru et al. 2010). Within this conceptual lens, the observed patterns of healthcare utilisation among individuals with SCD residing in tribal-dominated districts can be understood as reflecting the combined influence of multiple factors. These include individual-level, and community-level sociodemographic characteristics, as well as structural and context-specific constraints. Together, these factors influence healthcare service availability and continuity of care. These frameworks were used to guide the selection of study variables and the interpretation of findings, and they provide a useful basis for understanding healthcare-seeking behaviour in resource-constrained and underserved settings such as those included in the present study (Levesque et al. 2013).

A higher proportion of women (58.24%) was observed, which may reflect gendered differences in health-seeking behaviours (Currò et al. 2007). The age distribution indicates early onset and detection of SCD and may reflect either survival bias or age-related disparities in healthcare utilisation (Piel et al. 2010; Rao et al. 2024). Most people with SCD were not engaged in productive activities. These patterns are consistent with prior studies indicating low workforce participation among individuals with SCD (Idowu et al. 2013; Gil et al. 2004; Bediako 2010; Ballas et al. 2010). Primary earners in the family predominantly engaged in daily wage labour and agriculture. This indicates economic vulnerability and informal employment patterns in these districts.

Educational levels were generally low, suggesting potential barriers to health literacy. Nuclear families were the most common family type, indicating the availability of fewer family support structures, which may influence psychological well-being (Naz et al. 2014). Lower income and poor living conditions have been reported in previous studies to be linked to higher disease burden, complications, and healthcare costs (Ozdemir et al. 2022). Out-of-pocket expenditure remains a significant barrier to access, accounting for over half of India’s health spending (WHO 2018).

Health insurance coverage was more widespread due to government schemes such as PM-JAY and state-run schemes. Having such insurance schemes protects people from catastrophic healthcare expenditures (Sriram and Khan 2020; Singh and Kumar 2017). Previous studies suggest that insurance coverage may influence care-seeking behaviour (Kusuma et al. 2018) and reduces financial burden (Nguyen et al. 2012; Ekman 2007; Sahoo and Madheswaran 2014; Aji et al. 2013; Aryeetey et al. 2016). However, in several places, people were unaware of their insurance status (Nandi et al. 2017). Awareness of SCD status was mainly attributed to the functioning of healthcare providers of the primary healthcare system. These findings underscore the critical role of frontline health workers (Bangalore Sathyananda et al. 2021; Babu et al. 2022a).

Most participants sought care for SCD from primary healthcare facilities, reinforcing the role of public primary care infrastructure (Babu et al. 2023a, b; Surti et al. 2025; Sharma et al. 2025). Previous studies have reported that non-utilisation of services may be related to socioeconomic barriers (Surti et al. 2025; Sharma et al. 2025). Encouragingly, about 67% of participants were continuing the treatment with hydroxyurea. Hydroxyurea is the only proven pharmacologic option available in India for preventing vaso-occlusive crises and other SCD complications (Sridevi et al. 2022; Jena et al. 2026). Hence, the government’s support needs to be strengthened in terms of the availability of hydroxyurea at primary healthcare facilities. Although initiation of hydroxyurea therapy was reported by a proportion of participants, treatment discontinuation remained common. Previous studies have reported several potential reasons for discontinuation of hydroxyurea. These include concerns about side effects and irregular availability of the drug. Inadequate counselling regarding long-term benefits and challenges related to laboratory monitoring also contribute. In addition, patient perceptions of medication burden may influence continuation (Walsh et al. 2014; Vick et al. 2021; Jena et al. 2026). In tribal and rural contexts, these factors may be further compounded by geographic barriers and competing livelihood priorities. Health system constraints may also disrupt continuity of care (Surti et al. 2025; Sharma et al. 2025). In the present study, however, the relatively high uptake of hydroxyurea observed in a predominantly tribal and resource-limited setting is noteworthy. It may reflect recent national and state-level programmatic efforts to improve access to hydroxyurea therapy through public health facilities. Improved availability of hydroxyurea at government centres, along with greater provider awareness, may reflect recent programmatic efforts to improve access to therapy. Taken together, these findings underscore the importance of sustained counselling, uninterrupted drug supply, and strengthened health system support to ensure not only initiation but also long-term adherence to hydroxyurea therapy in resource-constrained settings.

The observed patterns of healthcare-seeking behaviour have important implications for the NSCAEM. While screening and diagnosis are critical first steps, the findings underscore gaps in continuity of care, particularly the sustained use of hydroxyurea among individuals with SCD in tribal-dominated districts. Strengthening primary healthcare facilities, ensuring uninterrupted availability of essential medicines, and improving referral linkages across levels of care may help address these gaps and support long-term disease management under the Mission.

Informal and alternative healthcare-seeking behaviours, which are commonly reported among individuals with SCD and other chronic conditions in resource-limited and tribal settings, were not explored in depth in the present study. Previous studies from India have documented the use of traditional healers, informal providers, and home-based remedies as important components of care-seeking pathways, particularly in rural and tribal communities, including for SCD (Babu et al. 2021, 2022b; Surti et al. 2025). The limited assessment of such informal or alternative care practices in this study may therefore underestimate the full spectrum of healthcare-seeking behaviour among the study population and represents an important area for future research.

The findings emphasise the need for comprehensive SCD management strategies that integrate social, occupational, and psychosocial support, especially for marginalised tribal populations. This study further suggests the urgent need for targeted public health interventions addressing the socioeconomic and healthcare challenges faced by individuals with SCD in tribal and underserved regions of India. There is a need to strengthen the capacity of primary healthcare systems to ensure they can deliver timely and comprehensive services for SCD. Expanding the availability of low-cost diagnostic tools and improving access to hydroxyurea therapy remain central to improving patient outcomes. Equally important is expanding health insurance coverage to ease the financial pressures faced by affected families. Beyond the medical sector, the substantial social and occupational challenges associated with SCD underscore the need for integrated support that combines healthcare with psychosocial counselling and livelihood assistance. Such measures could guide state and national programmes, particularly the NSCAEM, towards approaches that are equitable, sustainable, and truly responsive to the needs of SCD patients.

Study Limitations

This study has certain limitations that should be considered while interpreting the findings. First, the cross-sectional design limits the ability to draw causal inferences regarding healthcare-seeking behaviour and related factors. Second, information on healthcare utilization, treatment history, and health-seeking practices was self-reported and may therefore be subject to recall bias or social desirability bias. Third, although the study offers valuable descriptive insights, no inferential statistical analyses were conducted to examine associations between sociodemographic characteristics and healthcare-seeking behaviour, and the findings should therefore be interpreted as descriptive patterns rather than determinants. In addition, participants were recruited from registry-listed individuals in selected districts, which may introduce selection bias. Individuals included in the registry are more likely to be diagnosed and connected to health services. As a result, the study may not adequately capture individuals with SCD who remain undiagnosed, are not enrolled in registries, or have limited interaction with the healthcare system. Therefore, the findings may not be fully generalisable to all individuals with SCD in other regions or to those not accessing healthcare services.

Conclusion

This study profiles individuals living with SCD in five tribal-majority districts of India, indicating key sociodemographic and healthcare challenges. Participants were predominantly young, economically disadvantaged, and had limited education, with many relying on agriculture or daily wage labour. Despite these constraints, awareness of their diagnosis was generally high, and hydroxyurea use was common. Gaps remain in health insurance coverage, consistent government support, regular access to care and adherence to hydroxyurea therapy. Addressing these challenges requires integrated strategies. These should include strengthening primary healthcare, ensuring reliable access to essential medicines, expanding insurance coverage, and providing psychosocial support. Such measures could help reduce inequities and guide India’s ongoing efforts under the NSCAEM.

Author contributions

Conceptualization and funding acquisition: BVB; Data curation, visualization, and analysis: YS, DB, PS, SBS, JS, MB, MR, BVB; Investigation, supervision, and project administration: DB, YS, PS, SBS, JS, MB, MR, BVB; Resources: BVB; Validation: DB, YS, PS, SBS, JS, MB, MR, BVB; Writing original draft: DB, BVB. Data was accessed and verified by YS, DB, PS, SBS, JS, MB. All authors reviewed the manuscript, provided critical inputs and approved the final manuscript. The decision to submit this manuscript was made by all authors.

Data availability

De-identified study data can be shared upon request by researchers. Data requests can be sent to the corresponding author.

Declarations

Ethical approval

The authors declare that the procedures followed were in accordance with the World Medical Association Declaration of Helsinki updated in 2013. Approval was granted by the Ethics Committees of the authors’ institutes located at all five study sites. Informed consent was obtained from all participants. For participants below 18 years of age, written informed consent was obtained from a parent or legal guardian, and assent from the participant was obtained where appropriate.

Competing interests

The authors declare no competing interests.