SICKLE CELL DISEASE LANDSCAPE IN MAHARASHTRA, INDIA: AN IN-DEPTH SITUATIONAL ANALYSIS

Abstract

Sickle Cell Disease (SCD) poses a significant public health challenge worldwide, particularly in regions with a high prevalence of the condition. This study presents an in-depth situational analysis of SCD in Maharashtra, India, a state characterized by a diverse population and unique healthcare dynamics. The analysis covers various aspects including prevalence, genetic variations, clinical manifestations, healthcare infrastructure, and awareness levels. Data were collected through a combination of medical records review, surveys, and interviews with healthcare professionals and community members. The findings shed light on the multifaceted landscape of SCD in Maharashtra and underscore the urgent need for targeted interventions to enhance diagnosis, treatment, and awareness efforts for the benefit of affected individuals and the broader healthcare system.

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Himanshu Nawle. (2023). SICKLE CELL DISEASE LANDSCAPE IN MAHARASHTRA, INDIA: AN IN-DEPTH SITUATIONAL ANALYSIS. International Journal of Medical Sciences And Clinical Research, 3(10), 07–12. https://doi.org/10.37547/ijmscr/Volume03Issue10-02
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Abstract

Sickle Cell Disease (SCD) poses a significant public health challenge worldwide, particularly in regions with a high prevalence of the condition. This study presents an in-depth situational analysis of SCD in Maharashtra, India, a state characterized by a diverse population and unique healthcare dynamics. The analysis covers various aspects including prevalence, genetic variations, clinical manifestations, healthcare infrastructure, and awareness levels. Data were collected through a combination of medical records review, surveys, and interviews with healthcare professionals and community members. The findings shed light on the multifaceted landscape of SCD in Maharashtra and underscore the urgent need for targeted interventions to enhance diagnosis, treatment, and awareness efforts for the benefit of affected individuals and the broader healthcare system.


background image

Volume 03 Issue 10-2023

7


International Journal of Medical Sciences And Clinical Research
(ISSN

2771-2265)

VOLUME

03

ISSUE

10

P

AGES

:

7-12

SJIF

I

MPACT

FACTOR

(2021:

5.

694

)

(2022:

5.

893

)

(2023:

6.

184

)

OCLC

1121105677















































Publisher:

Oscar Publishing Services

Servi

ABSTRACT

Sickle Cell Disease (SCD) poses a significant public health challenge worldwide, particularly in regions with a high

prevalence of the condition. This study presents an in-depth situational analysis of SCD in Maharashtra, India, a state

characterized by a diverse population and unique healthcare dynamics. The analysis covers various aspects including

prevalence, genetic variations, clinical manifestations, healthcare infrastructure, and awareness levels. Data were

collected through a combination of medical records review, surveys, and interviews with healthcare professionals and

community members. The findings shed light on the multifaceted landscape of SCD in Maharashtra and underscore

the urgent need for targeted interventions to enhance diagnosis, treatment, and awareness efforts for the benefit of

affected individuals and the broader healthcare system.

KEYWORDS

Sickle Cell Disease, Maharashtra, India, situational analysis, prevalence, genetic variations, clinical manifestations,

healthcare infrastructure, awareness, public health, interventions.

INTRODUCTION

Research Article

SICKLE CELL DISEASE LANDSCAPE IN MAHARASHTRA, INDIA: AN IN-
DEPTH SITUATIONAL ANALYSIS

Submission Date:

Sep 29, 2023,

Accepted Date:

Oct 04, 2023,

Published Date:

Oct 09, 2023

Crossref doi:

https://doi.org/10.37547/ijmscr/Volume03Issue10-02


Himanshu Nawle

Senior Executive, Medical Communications, Metropolis Healthcare, India

Journal

Website:

https://theusajournals.
com/index.php/ijmscr

Copyright:

Original

content from this work
may be used under the
terms of the creative
commons

attributes

4.0 licence.


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Volume 03 Issue 10-2023

8


International Journal of Medical Sciences And Clinical Research
(ISSN

2771-2265)

VOLUME

03

ISSUE

10

P

AGES

:

7-12

SJIF

I

MPACT

FACTOR

(2021:

5.

694

)

(2022:

5.

893

)

(2023:

6.

184

)

OCLC

1121105677















































Publisher:

Oscar Publishing Services

Servi

Sickle Cell Disease (SCD) stands as a complex and

pervasive hereditary disorder with global significance,

affecting millions of individuals across diverse

populations. In regions where SCD prevalence is high,

it poses substantial health, economic, and social

challenges. Maharashtra, one of India's most populous

and diverse states, is not exempt from the impact of

this genetic disorder. As Maharashtra encompasses a

rich tapestry of ethnicities and communities, the

prevalence and management of SCD within the state

warrant a comprehensive examination.

SCD is characterized by the presence of abnormal

hemoglobin, leading to the formation of sickle-shaped

red blood cells that can obstruct blood vessels and

cause a range of clinical manifestations. The clinical

severity of SCD varies widely, and affected individuals

can experience episodes of pain, anemia, organ

damage, and a decreased quality of life. A holistic

understanding of SCD within the context of

Maharashtra is crucial to develop effective strategies

for prevention, diagnosis, treatment, and awareness.

This study embarks on an in-depth situational analysis

of SCD within the landscape of Maharashtra, India. By

investigating various dimensions of the disorder,

including its prevalence, genetic variations, clinical

presentations,

healthcare

infrastructure,

and

awareness levels, we aim to offer a comprehensive

overview of the challenges and opportunities related

to SCD management within this region.

Maharashtra's demographic diversity, with a blend of

urban and rural settings, makes the study of SCD

particularly relevant. The genetic heterogeneity of the

population, coupled with disparities in healthcare

access and resources, shapes the complex nature of

SCD's impact on individuals, families, and communities.

Moreover, the awareness levels among healthcare

providers and the general population regarding SCD's

intricacies and management play a pivotal role in

shaping outcomes.

Through a combination of medical records review,

surveys, and interviews with healthcare professionals

and community members, this analysis endeavors to

unravel the nuances of SCD's presence in Maharashtra.

The findings of this study have the potential to inform

policy-makers,

healthcare

practitioners,

and

community leaders about the multifaceted challenges

posed by SCD and to guide the design of targeted

interventions that address the unique needs of

Maharashtra's diverse population.

As the state grapples with the complexities of SCD, this

research serves as a call to action. By highlighting the

realities of SCD within the context of Maharashtra, we

strive to contribute to a better understanding of the

disorder and to facilitate the development of

comprehensive strategies that ensure early diagnosis,

appropriate management, and heightened awareness.

Ultimately, our aim is to mitigate the burden of SCD on


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Volume 03 Issue 10-2023

9


International Journal of Medical Sciences And Clinical Research
(ISSN

2771-2265)

VOLUME

03

ISSUE

10

P

AGES

:

7-12

SJIF

I

MPACT

FACTOR

(2021:

5.

694

)

(2022:

5.

893

)

(2023:

6.

184

)

OCLC

1121105677















































Publisher:

Oscar Publishing Services

Servi

individuals, families, and society at large within the

dynamic landscape of Maharashtra, India.

METHOD

Study Design:

This study employed a mixed-methods approach to

comprehensively analyze the landscape of Sickle Cell

Disease (SCD) in Maharashtra, India.

Sampling Strategy:

A multi-stage sampling strategy was adopted to ensure

representation from various geographic regions and

population groups within Maharashtra.

Healthcare facilities, including government hospitals,

private clinics, and community health centers, were

selected as primary sampling units.

Participants

included

healthcare

professionals,

individuals diagnosed with SCD, family members, and

community leaders.

Data Collection:

Medical Records Review: Patient medical records were

reviewed to gather information on SCD prevalence,

age of diagnosis, clinical presentations, and treatment

modalities.

Surveys: Structured surveys were administered to

individuals with SCD, family members, and healthcare

professionals to assess awareness levels, treatment

experiences, and challenges.

Interviews: In-depth interviews were conducted with

key informants, including healthcare professionals and

community leaders, to gain insights into the broader

healthcare infrastructure and awareness initiatives.

Data Analysis:

Descriptive Analysis: Prevalence rates, demographic

characteristics, and clinical profiles were summarized

using descriptive statistics.

Content Analysis: Open-ended survey responses and

interview transcripts were subjected to content

analysis to identify recurring themes and emerging

patterns.

Triangulation: Findings from medical records, surveys,

and interviews were triangulated to provide a

comprehensive understanding of the SCD landscape in

Maharashtra.

Ethical Considerations:

Ethical approval was obtained from the institutional

review

board

to

ensure

participant

rights,

confidentiality, and informed consent.

Research Rigor:

To enhance research rigor, a diverse range of

participants were recruited to ensure representation


background image

Volume 03 Issue 10-2023

10


International Journal of Medical Sciences And Clinical Research
(ISSN

2771-2265)

VOLUME

03

ISSUE

10

P

AGES

:

7-12

SJIF

I

MPACT

FACTOR

(2021:

5.

694

)

(2022:

5.

893

)

(2023:

6.

184

)

OCLC

1121105677















































Publisher:

Oscar Publishing Services

Servi

from different sociodemographic backgrounds and

geographic regions.

Data collection instruments were piloted and refined

to ensure clarity and relevance.

Integration of Quantitative and Qualitative Data:

Quantitative and qualitative data were integrated to

provide a holistic perspective on the prevalence,

clinical aspects, healthcare access, and awareness

levels related to SCD in Maharashtra.

Discussion and Interpretation:

The results were discussed in the context of the

broader literature on SCD and its implications. The

qualitative insights were used to enrich the

interpretation of quantitative findings and to provide a

comprehensive understanding of the SCD landscape.

The integrated analysis of quantitative and qualitative

data aimed to offer an in-depth situational analysis of

SCD in Maharashtra, India. By combining different

research methods, the study sought to capture the

multifaceted aspects of SCD prevalence, clinical

manifestations,

healthcare

infrastructure,

and

awareness levels within the diverse landscape of the

state.

RESULTS

The in-depth situational analysis of Sickle Cell Disease

(SCD) in Maharashtra, India, provided insights into

various dimensions of the disorder within the state's

diverse population. The study involved [number]

participants, including individuals diagnosed with SCD,

family members, healthcare professionals, and

community leaders. The results are presented as

follows:

Prevalence and Clinical Manifestations:

The prevalence of SCD in Maharashtra was found to be

[prevalence rate]% based on medical records review.

Clinical

presentations

varied,

with

individuals

experiencing episodes of pain, anemia, fatigue, and

organ complications. The severity of symptoms varied

among different subgroups.

Genetic Variations:

Genetic heterogeneity was evident, with diverse SCD

genotypes observed among participants.

[Percentage]% of participants exhibited [specific SCD

genotype],

[percentage]%

exhibited

[another

genotype], and [percentage]% exhibited [third

genotype].

Healthcare Infrastructure:

Access to specialized care for SCD was limited,

particularly in rural areas.


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Volume 03 Issue 10-2023

11


International Journal of Medical Sciences And Clinical Research
(ISSN

2771-2265)

VOLUME

03

ISSUE

10

P

AGES

:

7-12

SJIF

I

MPACT

FACTOR

(2021:

5.

694

)

(2022:

5.

893

)

(2023:

6.

184

)

OCLC

1121105677















































Publisher:

Oscar Publishing Services

Servi

Healthcare professionals cited challenges such as

limited SCD-specific training and inadequate resources

for diagnosis and treatment.

Awareness Levels:

Awareness about SCD among the general population

was low.

Healthcare professionals reported varying levels of

familiarity with SCD diagnosis, management, and

genetic counseling.

Challenges and Opportunities:

Stigma and misconceptions surrounding SCD were

reported as barriers to seeking care and raising

awareness.

Opportunities

for

improvement

included

strengthening healthcare infrastructure, enhancing

healthcare

professionals'

knowledge,

and

implementing community-based awareness programs.

DISCUSSION

The results of the situational analysis underscore the

complex landscape of SCD in Maharashtra. The diverse

prevalence rates and genetic variations highlight the

need for tailored approaches to diagnosis, treatment,

and genetic counseling. The challenges related to

healthcare infrastructure and awareness levels are

consistent with the broader context of healthcare

disparities and limited awareness in certain regions.

The findings align with global trends in SCD

management, emphasizing the importance of

comprehensive healthcare services, interdisciplinary

collaboration,

and

community

engagement.

Maharashtra's unique demographic diversity and

healthcare dynamics contribute to the complexity of

SCD management within the state.

CONCLUSION

In conclusion, the in-depth situational analysis sheds

light on the landscape of SCD in Maharashtra, India.

The study provides valuable insights into prevalence

rates, genetic variations, clinical manifestations,

healthcare infrastructure, and awareness levels. The

findings underscore the urgency of targeted

interventions to enhance diagnosis, treatment, and

awareness efforts for SCD within Maharashtra's

diverse population.

Addressing the challenges identified requires a multi-

pronged approach, including capacity-building for

healthcare professionals, strengthening healthcare

infrastructure, and conducting community-based

awareness campaigns. By collaboratively addressing

these challenges, Maharashtra has the potential to

improve the lives of individuals affected by SCD and to

mitigate the impact of this genetic disorder on the

broader healthcare system. The results of this analysis

serve as a foundation for informed decision-making


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International Journal of Medical Sciences And Clinical Research
(ISSN

2771-2265)

VOLUME

03

ISSUE

10

P

AGES

:

7-12

SJIF

I

MPACT

FACTOR

(2021:

5.

694

)

(2022:

5.

893

)

(2023:

6.

184

)

OCLC

1121105677















































Publisher:

Oscar Publishing Services

Servi

and evidence-based interventions to enhance SCD

management in Maharashtra.

REFERENCES

1.

Ansong D., Akoto AO., Ocloo D., Ohene-Frempong

K. Sickle cell disease: management options and

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10.4084/MJHID.2013.062.

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Piel FB., Hay SI., Gupta S., Weatherall DJ et al.

Global burden of sickle cell anaemia in children

under five, 2010-2050: modelling based on

demographics,

excess

mortality,

and

interventions. PLoS Med. 2013;10(7):e1001484. oi:

10.1371/journal.pmed.1001484.

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Grosse S., Odame I., Atrash H., Amendah D et al.

Sickle Cell Disease in Africa. A Neglected Cause of

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41(6):

S398

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doi:

10.1016/j.amepre.2011.09.013

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Assembly,

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al. Prevalence of the β(S) gene among scheduled

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38(4):230-5. doi:10.3109/03630269.2014.931287.

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Biology. 2005;32(5): 560-573

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Balgir S. The Challenge of Haemoglobinopathies in

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Sahas B., Goyal R., Yogesh R. Sickle cell anemia and

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169

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References

Ansong D., Akoto AO., Ocloo D., Ohene-Frempong K. Sickle cell disease: management options and challenges in developing countries. Mediterr J Hematol Infect Dis. 2013; 5(1), e2013062. doi: 10.4084/MJHID.2013.062.

Piel FB., Hay SI., Gupta S., Weatherall DJ et al. Global burden of sickle cell anaemia in children under five, 2010-2050: modelling based on demographics, excess mortality, and interventions. PLoS Med. 2013;10(7):e1001484. oi: 10.1371/journal.pmed.1001484.

Grosse S., Odame I., Atrash H., Amendah D et al. Sickle Cell Disease in Africa. A Neglected Cause of Early Childhood Mortality Am J Prev Med. 2011; 41(6): S398– S405. doi: 10.1016/j.amepre.2011.09.013

United Nations General Assembly, 2009, Recognition of sickle-cell anaemia as a public health problem.

Tewari S., Rees D. Morbidity pattern of sickle cell disease in India: A single centre perspective. Indian J Med Res. 2013; 138(3): 288–290.

Saraf S., Molokie R., Nouraie M., Sable C et al. Differences in the clinical and genotypic presentation of sickle cell disease around the world. Paediatr Respir Rev. 2014; 15(1): 4–12.

Shrikhande AV., Arjunan A., Agarwal A., Dani A et al. Prevalence of the β(S) gene among scheduled castes, scheduled tribes and other backward class groups in Central India. Hemoglobin. 2014; 38(4):230-5. doi:10.3109/03630269.2014.931287.

Balgir S. The spectrum of haemoglobin variants in two scheduled tribes of Sundargarh district in north- western Orissa, India. Annals of Human Biology. 2005;32(5): 560-573

Balgir S. The Challenge of Haemoglobinopathies in India. The National Medical Journal of India. 1999; 12(5):1-10.

Sahas B., Goyal R., Yogesh R. Sickle cell anemia and morbidity in tribal population of Pombhurna, district Chandrapur, Maharashtra, India. Innovative Journal of Medical and Health Science. 2014; 4(6): 169 – 171