Strengthening Health System and Community Mobilization for Sickle Cell Disease Screening and Management among Tribal Populations in India: An Interventional Study

Abstract Sickle cell disease (SCD) affects 5% of the global population, with over 300,000 infants born yearly. In India, 73% of those with the sickle hemoglobin gene belong to indigenous tribes in remote regions lacking proper healthcare. Despite the prevalence of SCD, India lacked state-led public health programs until recently, leaving a gap in screening and comprehensive care. Hence, the Indian Council of Medical Research conducted implementation research to address this gap. This paper discusses the development and impact of the program, including screening and treatment coverage for SCD in tribal areas. With a quasi-experimental design, this study was conducted in six tribal-dominated districts in three phases – formative, intervention, and evaluation. The intervention included advocacy, partnership building, building the health system’s capacity and community mobilization, and enabling the health systems to screen and manage SCD patients. The capacity building included improving healthcare workers’ skills through training and infrastructure development of primary healthcare (PHC) facilities. The impact of the intervention is visible in terms of people’s participation (54%, 76% and 93% of the participants participated in some intervention activities, underwent symptomatic screening and demanded the continuity of the program, respectively), and improvement in SCD-related knowledge of the community and health workers (with more than 50% of net change in many of the knowledge-related outcomes). By developing screening and treatment models, this intervention model demonstrated the feasibility of SCD care at the PHC level in remote rural areas. This accessible approach allows the tribal population in India to routinely seek SCD care at their local PHCs, offering great convenience. Nevertheless, additional research employing rigorous methodology is required to fine-tune the model. National SCD program may adopt this model, specifically for community-level screening and management of SCD in remote and rural areas.


Introduction
Sickle cell disease (SCD) is a hereditary condition that progressively impacts approximately 5% of the global populace.Over 300,000 infants are born with SCD yearly [1].Due to a lack of diagnosis and care, around 50-80% of SCD children die before age five [2].Approximately, 73% of Indians with the sickle hemoglobin gene are from the tribal (indigenous) population, whose population, as per the 2011 census, was 104 million (8.6% of India's population).This population primarily lives in remote forest and hilly terrains.They lag behind several developments, so health and healthcare-seeking behavior are deplorable [3].
Despite the significant prevalence of SCD in India, the country lacked state-led public health programs or a health-system strategy until recently, except a draft policy issued by the national government of India and the recent announcement of the mission to eliminate SCD [4,5].Concerning the mission to eliminate SCD, no roadmap for achieving the target of SCD elimination is available in the country.While extensive research has been conducted in India, it primarily focuses on screening and genetic investigations [6].Several interventions and management regimes are available in other areas, and they are safe and effective.In India, very little has been done to demonstrate the effectiveness of these therapies and has not been put in the public health care system [7].
In India, mortality and morbidity associated with SCD can be prevented through comprehensive management of the condition [7,8].Till recently, there have been no structured and functional public health programs in India for controlling and treating SCD, except in a few states like Gujarat.Despite the Indian government's formulation of comprehensive guidelines for preventing and managing hemoglobinopathies [4,9], it was initiated in very few states, and several gaps exist in their implementation.Overall, the program is not optimized, and the reach and treatment-related services are poor [10][11][12].The associated programs have not garnered significant attention from state public health departments.
Because of India's scattered tribal populations in remote villages in hilly terrains, community-based screening is more appropriate.All public health interventions in India are implemented through the primary health center (PHC) network, particularly in tribal and rural areas.These populations primarily rely on the PHC network for all healthcare needs.Hence, the health workers who deliver these activities have high credibility in the community.Health workers are responsible for the dissemination of health-related information.How health workers deliver information will influence the healthcare-seeking behavior of the people [13,14].In general, the tribal people do not like to go beyond their villages, particularly outside the tribal areas.Currently, SCD care is available in tertiary-level hospitals, and these hospitals are usually situated outside the tribal areas, and people rarely visit them.Hence, all components of SCD care, in the form of comprehensive care, must be available in their PHCs.The care may include screening and treatment.They may be referred to tertiary-level facilities for emergencies and other complications.Hence, the Indian Council of Medical Research (ICMR) conducted implementation research to develop a model for screening and treating SCD in tribal areas of India.The present paper reports the development and implementation of the program, its impact on the coverage of screening and treatment, and other implementation issues.

Study area
This study was conducted in six tribal-dominated districts across different geographical regions of the country where SCD is prevalent.These districts include Anuppur (in Madhya Pradesh), Chhotaudepur (in Gujarat), Kandhamal (in Odisha), Mysuru (in Karnataka), Udalguri (in Assam), and Visakhapatnam (in Andhra Pradesh).Notably, these study areas have not been subject to any systematic SCD programs within the public health system.Precautions have been taken to prevent program duplication and counterproductivity.These districts' demographic and SCD-related information is provided elsewhere [15,16].

Study design
Multi-center research was undertaken to establish an effective intervention model for SCD patients within tribal communities, utilizing the government healthcare system [15].The study employed a quasi-experimental design, comparing pre-and post-intervention out/comes within the intervention groups, as well as with a control group.
The study was carried out in three phases, i.e. (i) formative phase, (ii) intervention, and (iii) evaluation phase.In the formative phase, information was gathered using a mixedmethod approach to understand better the situation for the intervention's development and implementation.For quantitative household surveys conducted during the formative and evaluation phases, the sample size was estimated using the formula, Z P P Z P P P P P P . We have taken the rise of the community's SCD-related awareness, one of the primary outcomes of this research was considered for calculating the sample size.The sample size was calculated by assuming an initial community awareness of SCD (p) at 5%; the intervention is aimed at raising this awareness to 10%, with a 95% confidence level and 80% power [17].Detailed sample size calculation and survey information are available elsewhere [15].Given the quasi-experimental design, the study adopted pre-and post-intervention comparisons of outcomes within the interventional groups and with the control groups, and hence, surveys were conducted accordingly.These surveys were conducted among the community and healthcare personnel to cover the perspectives of the community and health system.Both quantitative and qualitative data were collected, and probability and purposive sampling techniques were used, respectively.The issues studied during the formative research are mentioned in Supplemental Table 1.Surveys conducted in the formative phase helped identify community facilitators and barriers to screen and manage SCD patients.The capacity of the primary health care system and the SCD-related awareness of the community for carrying out the intervention program were examined.Findings of the formative phase were reported [16,[18][19][20][21]. Based on the findings of the formative research, an intervention with an inclusive partnership strategy was developed and implemented.With an implementation research framework, this study aimed to improve the skills and infrastructure of the public health facilities and personnel to screen and manage SCD, improve the community's awareness, and thereby accept the SCD program.This intervention was conducted from October 2020 to June 2022.One of the outcomes of the intervention is the community's acceptance of the program for screening and treatment of SCD.

Advocacy
The advocacy aimed to inform the stakeholders and convince them to provide essential support to ensure the smooth implementation of intervention activities.Advocacy efforts started with a policy brief from the ICMR, highlighting the need to develop comprehensive SCD care.Advocacy efforts aimed to build partnerships for the intervention activities, as in Supplemental Tables 2 and 3. Supplemental Table 2 shows the stakeholders who planned to build a partnership toward implementing the proposed intervention and a network for sustainable outcomes.The key persons who can direct the implementation level health and non-health government functionaries were identified in state and district health departments.
To implement this intervention, intensive advocacy was carried out with governmental and non-governmental stakeholders, non-governmental organizations (NGOs), etc.The findings of the formative research were used for advocacy.Authorities were expected to direct district and PHC staff to be involved in the intervention.The partnership was sought at the state level to achieve the direction of state administration to the district, sub-district, and PHC-level authorities to be involved in the project activities.It was important to have repeated advocacy sessions with all stakeholders to ensure their cooperation.
Along with advocacy with the state and district authorities, the local/village leaders and sarpanches (democratically elected heads of local self-government of the villages) were also approached.Their presence made people believe in the program and made them aware of how it would benefit the villagers.Multiple meetings were conducted to inform them about the project and request their participation in the community mobilization activities.

Inclusive partnership
It involves diverse and inclusive representation of various health and non-health sectors, including tribal welfare, local administration, and non-governmental agencies in intervention design and implementation.The partnership was built with community leaders, too.As described earlier, the partnership with various stakeholders was made through advocacy (Supplemental Table 3).The public health system and community have been key in planning and implementing the intervention.The involvement of the state public health department is one of the most significant prerequisites for the success of the intervention.

Building health system's capacity
The PHCs and their institutions, including the health care workers, were strengthened to screen and manage SCD patients.The healthcare workers were made aware of the SCD and its burden.Various advocacy materials were used, like policy briefs, information brochures, etc. Health workers and laboratory technicians were trained primarily on screening methods, and doctors were oriented to treat and manage SCD.

Improvement of skills through training
The community health workers, namely Accredited Social Health Activists (ASHAs) at the village level, have been trained to screen the suspected cases based on the signs/ symptoms of the individuals.Accredited Social Health Activists' capacity was enhanced by repeatedly training them to identify potential cases of SCD using the symptomatic survey checklist.Various orientation sessions were conducted.Role plays were done to make ASHA understand the checklist to bring people for screening.The regular health workers stationed at the sub-health centers were trained to perform and analyze the solubility test using sickle cell solubility test kits.Various procedures of solubility tests and interpretation of results were explained and demonstrated during training.The laboratory technicians of the PHCs have been trained to perform hemoglobin electrophoresis and interpret the electrophoresis patterns.They were trained in different steps of electrophoresis, including buffer preparation, preparation, and application of hemolysate on cellulose acetate strips of 17 cm, etc.The details of the screening model developed under this study were given elsewhere [16].These healthcare staff were trained for hands-on experience to build competency and sustain motivation.Information brochures were provided for ready reference.In addition, they were oriented to maintain the registers and to appropriately refer the patients to higher-level healthcare facilities.
The orientation of PHC doctors was initially done by the research team.They were made aware of the screening process.Later, a clinical hematologist trained them on various clinical aspects and treatments.A manual on essential aspects of SCD, including its management, was developed and provided to all doctors.Doctors were oriented on routine treatment in normal conditions of patients, in addition to managing vaso-occlusive crises (VOCs).Doctors were informed about hydroxyurea therapy, antibiotic prophylaxis, and pneumococcal vaccination.They were informed of various modalities of the treatment through case-based discussions.Further, they were informed of the need for blood transfusion and referral to tertiary-level medical facilities.All healthcare personnel were trained and oriented in the system as part of their work, and therefore, no monetary incentives were provided except the training certificates.

Infrastructure development of primary healthcare facilities
Infrastructure development under this program includes supplying and maintaining equipment and supplies required to conduct solubility tests and hemoglobin electrophoresis in sub-health centers and PHCs, respectively.Drugs required for the treatment and management of SCD were also supplied.Kits, reagents, glassware, and items required for conducting solubility tests were supplied to the sub-health centers.PHCs were equipped with electrophoresis units, power packs, and supplies, including electrophoresis kits, glassware, and reagents.These are required to conduct hemoglobin electrophoresis.Drugs required for the treatment of SCD, viz., hydroxyurea, antibiotics, vaccines, analgesics, and other common drugs, were also supplied to PHCs.

Community mobilization
Community mobilization, undertaken by various program partners, aimed to raise people's awareness about SCD and demand for SCD care and to be involved in the delivery of resources and services related to screening and treatment of SCD.Community mobilization was primarily done through extensive Information, Education, and Communication (IEC) activities, including interpersonal communication.Information, Education, and Communication materials, in the form of pamphlets, posters, and danglers, were developed and targeted community members and key people like village/tribal leaders.Table 1 shows the implementation of various community mobilization activities conducted in study sites.The health system's existing routes of IEC were adopted.The ASHAs usually go door to door to distribute the IEC materials.The posters were displayed at locations in the villages meant for public gatherings.
The other method for community mobilization was sensitizing the ASHAs and village leaders.Information brochures were given to them.The ASHAs and village leaders were meant to play a significant role in the intervention.They not only encouraged the villagers to go for screening but if a patient was detected, the ASHA, with proper knowledge of the disease, took care of the patient and assisted the patient in seeking care.Therefore, the ASHA were sensitized about the intervention in meetings held at PHCs and sub-health centers.
Village leaders were sensitized about SCD and the intervention.In areas with higher sickle cell gene prevalence, imparting knowledge about the disease, its causes, etiology, and triggers is crucial for the local populace.Stakeholders and village leaders participated in these sessions organized throughout the intervention phase.Accredited Social Health Activists addressed village leaders and distributed IEC materials.
In addition, local schools were engaged to spread SCD information, with programs conducted upon the state education department's approval.Folk dramas were employed for mobilization in low-turnout villages, drawing audiences, mostly children.Traditional drama is used by the health system to inform about health programs conducted in local tribal dialects.Health facility walls were painted with SCD-related information and health system contact for a lasting impact.

Screening
The three-tier scheme was used to carry out screening to cover a maximum number of people of all age groups [16].The population-based screening was carried out using the symptomatic survey through ASHA as the first tier.The survey covered all the children and adults suspected of having SCD.All the suspected cases identified using the checklist of symptoms were referred to the sub-health center for further diagnosis.In addition, the extended family members of the known patients with SCD were also screened.
At the next level/tier, the regular health worker conducted the solubility test at the sub-health center.They also directed the solubility-positive people to visit the PHC for further confirmation by hemoglobin electrophoresis as a tier three test.Many patients did not visit PHC to give blood samples to conduct the electrophoresis in some places despite repeated reminders by health workers and ASHAs.In response to the problem, the proposal suggested collecting blood samples on Immunization Day and transporting them in the vaccine carrier.Patients were informed to visit the sub-health center, where health workers drew blood.These samples were transferred within the cold chain to the PHC for hemoglobin electrophoresis.
Standard operating protocols for sample collection, storage and transport, testing and interpreting results were provided to assure the quality of screening tests.In the laboratories, the solubility test and hemoglobin electrophoresis methodologies were standardized.

Indian SCD registry (ISCDR)
The research team developed the registry software with technical support from a software firm [21].The training on using the registry was given to the laboratory technicians in the PHC.Data from each positive patient were recorded in the registry and could be accessed by the research teams.The ISCDR helped the team keep track of the management of patients.The laboratory technicians at the PHC maintained the ISCDR of positive patients, and the PHC doctors gave treatment.

Treatment for SCD
The arrangements were made to initiate treatment as soon as the SCD patients were screened and registered by the ISCDR.All the diagnosed SCD patients were checked by the doctors at the PHCs, and the treatment was initiated.Hydroxyurea therapy was also initiated.It was further decided to withdraw the hydroxyurea therapy if warranted based on the patient's condition.Other symptomatic treatments, including those during the VOCs, were provided.Whenever possible, penicillin prophylaxis and other vaccines were given.Advocacy efforts with the district health system were carried out to supply pneumococcal vaccines, which was successful in some sites.All patients were given an information brochure containing information on treatment and other care to be taken to prevent VOC episodes.

Results
All staff concerned were trained after hardware and software needs were appropriately met in all locations.All activities at all health facilities have been initiated, including screening for SCD at different levels, registering patients, and initiating treatment.The community mobilization activities continued throughout the intervention, including the IEC and interpersonal communication by health workers and community leaders.The observations revealed that all activities, from screening to management, were going on well.Many workforce and supply-related issues have been addressed to achieve optimum coverage for complete screening and treatment through the ISCDR.The regular administrative system ensures continuous monitoring of the situation, particularly the management of staff.In addition, the staff involved in the intervention was motivated by the health system.Supply of medicines to PHCs was ensured.

Impact of community mobilization activities
For assessing the impact of the intervention on the following issues, surveys were conducted before and after the implementation of the intervention in both control and intervention areas.The basic socio-demographic characteristics of the participants of these surveys were similar across the surveys (Table 2).

People's participation in SCD-related activities
Different methods were used to make people aware of SCD to increase the acceptance of screening and willingness to seek care.The study demonstrated the feasibility and approval of community-level screening through a three-tier approach (Table 3).End-line survey results revealed that around 54% of people reported participating in the program implemented in their area.Also, most people (92.7%) said they want the program's continuation by government health workers in their locality.Around 76% of the survey participants were screened by the village-level ASHA.Among them, 62.8% reported to health workers at the sub-health center for solubility testing.About 20% were found positive for solubility, and 19.5% reported getting their electrophoresis test done at PHC.

Improvement in community's SCD-related awareness
Table 4 highlights enhanced SCD knowledge.Prior to intervention, 33.2% of intervention PHC participants were aware of SCD, rising to around 95% post-intervention.In control PHCs, the increase was 7%.Awareness of SCD's hereditary nature surged from 7.7% to 67.6% in the intervention group.Understanding that SCD can be diagnosed through a blood test rose from 26.3% to 91.2% after intervention.Knowledge of SCD's treatability increased from 13% pre-intervention to 34.5% post-intervention.Awareness that modern medicine treats SCD increased from 21.3% to 91%.Sickle cell disease's preventability awareness increased from 12.37% to 86%.The study employed difference-in-differences (DIDs) approaches, as recommended for pooling two cross-sectional surveys to form panel data to assess the net change in outcomes between intervention and control areas during both pre-and post-intervention phases.The values from the DID analysis indicate a net change of more than 50% in many of the knowledge-related outcomes.

Changes in perceptions/knowledge of health workers
The health workers' knowledge has improved after the intervention because of training sessions and information material.During the pre-intervention study, only 78% of ASHAs and 92% of regular health workers were aware of SCD.However, after the intervention, all were aware of SCD.The knowledge that SCD is hereditary is substantially improved among ASHAs (42% vs. 100%) and regular health workers (62% vs. 100%).The knowledge of SCD-related symptoms and management and prevention of SCD was also improved substantially after participating in the intervention.

Coverage in screening
The screening program was initiated as soon as all arrangements concerning capacity building and supplies were made.
Of the population of 294,717 living in these PHCs, 15,486 (5.25%) were identified by ASHAs based on symptoms.These people possessed some SCD-related symptoms and were advised to take solubility tests at sub-health centers.In addition, regular health workers, during their routine activities, identified some individuals who had symptoms of SCD.Also, some people self-reported to sub-health centers after being exposed to IEC.Consequently, 18,772 individuals underwent solubility testing conducted by regular health workers at sub-health centers, with 3,768 (20.07%) testing positive for the solubility test.Of these people, 3,090 (82.01%) underwent hemoglobin electrophoresis.A total of 2,095 (67.80%) were positive from this confirmatory test.Of these, 324 (15.47%) were SCD patients and were registered in the registry, and the remaining people (1,771, 84.53%) were of sickle cell trait.However, in the control area, there was no screening system available.Those who wanted to get screened had to visit tertiary healthcare facilities in district headquarters, and as a result, no screening data were available from control areas.

Treatment coverage
In a year, 324 patients were registered in the ISCDR.It is noted from the patients that most of them (85.18%) were unaware of their SCD status before this screening, which means that they were unaware that they have SCD.After the SCD patients had been registered, it was attempted to initiate treatment.The treatment was initiated for 96.3% of patients, and 83.64% were kept under hydroxyurea therapy immediately (Figure 1).It was found through ISCDR that treatment was continued by visiting PHCs and 74% of patients revisited the PHC as they have some treatment needs other than collecting the drugs.

Discussion
Sickle cell disease is a complex condition that necessitates diverse interventions and comprehensive care strategies for effective management and prevention [22][23][24][25][26].This study demonstrates the feasibility of implementing a comprehensive sickle cell program based at PHC in remote tribal areas of India.This is because of the high reliance of tribal communities on the PHC system and the credibility of the PHC workers.Sickle cell disease has been recorded in various ethnic groups in India, with the highest prevalence in tribal communities [27].Because of the nature of the habitations of India's scattered tribal populations, the current community-based screening seemed to be more appropriate.
In the present intervention, health workers carried out several activities, which could be one reason for successful implementation.Similar examples are available from a few places, particularly for SCD care [28,29].Similar practices and guidelines for managing SCD patients at the PHC level are available in a few other SCD-endemic countries [30][31][32][33][34][35][36].This kind of community-based intervention empowers the communities and healthcare workers.Ignorance and misperceptions concerning SCD are barriers to SCD care [37].The awareness of the community related to SCD has improved drastically due to the community mobilization activities of this intervention and witnessed the community's active participation.A good community understanding of SCD reduces mortality and morbidity due to SCD [38,39].This understanding helps patients and caregivers to gain better control over illness and improve their assertiveness during care-seeking [40].Parental knowledge of SCD is essential in recognizing SCD and its complications among children and caring for them [41][42][43].After the active involvement of health workers and other healthcare providers in the program, their understanding of SCD also improved.Enhancing the care provided by health workers and offering patient support and guidance can lead to improved outcomes for individuals with SCD [28].Empowering health workers through their active involvement, like in this study, improves the working process and quality of care regarding managing SCD patients [29,44,45].
A few studies in India and elsewhere demonstrated the feasibility of comprehensive SCD care.However, these models, particularly those from India, developed artificially in health facilities not under public health or PHC systems [46][47][48].The insights gained from these models can be applied in the development of the national program.The forthcoming mission to eliminate SCD by 2047 in India is expected to be implemented across India through the PHC system, and the current study can be a model with additional inputs.The lessons learnt in this study in six states will provide insights to initiate the national-level mission.As done in this study, rigorous screening for SCD is essential due to several undiagnosed SCD patients, particularly adult patients.However, we realized that the scalability of implementing solubility tests and hemoglobin electrophoresis is low due to sustaining the supplies of reagents and maintaining the laboratories.These processes are quite cumbersome and these tests require collecting venous blood from individuals.Due to this cumbersomeness, we limited the first level of screening to symptomatic people instead of universal screening covering all people.Hence, hemoglobin electrophoresis can be replaced with point-of-care (PoC) tests for ease.These PoC tests can be conducted either at sub-health centers or PHCs.Though a few PoC tests are available in India, their cost is high.Hence, research is warranted to develop more accurate and low-cost PoC tests.The use of PoC tests enables large-scale population screening, including screening asymptomatic people.Subsequently, SCD-positive patients enter the registry and receive treatment, including drugs.The registry developed in this study collects longitudinal data on SCD patients.These data are essential for planning research and making policies to manage SCD [21].
The national SCD program in India aims to screen individuals, encompassing adults and children, to provide treatment and care [4,5].Though the newborn screening program is identified as one of the strategies [49,50], screening adults is significant in India.India has no systematic SCD screening program, and many high-risk populations, like tribal populations, have not been screened so far.The present study showed that about 85% of the people screened to be SCD were unaware of their SCD status and not receiving any treatment.A considerable proportion of the screened SCD individuals (42%) are adults of 20 years and above.It may be because SCD in Indian patients is milder than other haplotypes seen elsewhere.In particular, the high prevalence of α thalassemia is another factor that determines the severity.Also, the Arab-Indian haplotype shows high levels of Hb F [51,52].Hence, adults are also to be included in the screening.Sickle cell disease is no longer considered a childhood disease in several contexts [24].The model of screening developed in this study is suitable for India's scatteredly distributed tribal habitations [16].Additionally, it was documented that the screening process and registry incur significantly low establishment and running costs [16,21].Specifically, the costs for screening and registry were US$ 9,054 and US$ 1,425 per district, respectively.Nevertheless, it might be necessary to integrate suitable PoC tests into the system.Furthermore, it is crucial to ensure comprehensive training for healthcare workers.The existing program identified the importance of training, and the program guidelines outline the training of healthcare workers at various levels [53].
Several therapeutic interventions have proven safe and efficacious in reducing morbidity and mortality among SCD patients [54].Early diagnosis followed by early initiation of pneumococcal vaccination and prophylactic penicillin reduces life-threatening infections [55,56].The therapeutic interventions, particularly hydroxyurea therapy, showed promising results among Indian SCD patients [7].Existing studies conducted in India have indicated that the utilization of hydroxyurea alone or in combination with other treatments has been effective in reducing the occurrence of VOCs, minimizing hospitalizations and the need for blood transfusions, and enhancing various hematological parameters [7].Hence, SCD patients require lifelong hydroxyurea therapy, which can be implemented through the PHC system, as demonstrated in this study.However, monitoring of hydroxyurea toxicity is essential, and patients are supposed to be referred to tertiary care facilities for various tests like complete blood count, liver, and renal function tests, etc. Registering SCD patients into the registry and tracking them for providing treatment and other care is possible in small implementation units like PHCs.Health workers will be responsible for monitoring these patients in their smaller geographical jurisdiction.A similar mechanism exists for caring for mothers and children in India.
While the study boasts strengths such as a multi-centric design and uniform methodology, limitations exist.As aforementioned, there are some limitations in the current screening model.Hence, PoC tests are to be integrated into the system for better scalability.The comprehensive model aimed to address essential components, yet certain elements like counseling and psychosocial support were underrepresented due to a shortage of trained staff.Incorporating these, alongside strategies like marriage/genetic counseling, would result in a more comprehensive model for Indian tribal communities.A robust referral system is essential.This cost-effective PHC-based care, with high patient adherence, underscores its success.Therefore, it is warranted to conduct implementation research to scale up the tested strategies from this study.Assessments of scalability, sustainability, fidelity, cost-effectiveness, and other factors should be considered, and a robust control arm may be incorporated to compare screening and treatment coverage with the intervention arm.Since SCD is prevalent not only in tribal communities but also in scheduled castes and backward communities, the study needs to be expanded to include other communities in broader geographical areas.This implementation research can be seamlessly integrated into the public healthcare system, aligning with the components of the national program.

Conclusions
The study showcased the viability of comprehensive SCD care implementation, particularly focused on PHC-level screening and treatment.This accessible approach empowers the Indian tribal population to access SCD care conveniently at local PHCs.However, further research incorporating rigorous methodology and addressing the reported limitations is necessary to fine-tune the model.This fine-tuned model might be integrated into India's upcoming national mission, particularly for community-level SCD screening and management.The refined model should incorporate extra elements like psychosocial support for patients and marriage/genetic counseling services to enhance its comprehensiveness.

Figure 1 .
Figure 1.Details of sickle cell disease patients screened and treated.

Table 1 .
Various community mobilization activities undertaken.

Table 2 .
Socio-demographic characteristics of the participants of various surveys.

Table 3 .
People's participation in the sickle cell disease-related intervention and screening program.

Table 4 .
Change in people's knowledge of sickle cell disease.
All pre vs. post-intervention changes in intervention areas are significant (p < .05),as assessed through Chi-squares.