Authors

  • Mirkhamidova Sevara Mirmakhmudovna
    Assistant Of The Department Of The Public Health And Management, Tashkent Medical Academy, Uzbekistan
  • Muyassarova Mukhabbat Mukhammadiyevna
    Senior Teacher Of The Department Of Public Health And Management, Tashkent Medical Academy, Uzbekistan
  • Abdurashitova Sharafat Abdumajidovna
    Senior Teacher Of The Department Of Public Health And Management, Tashkent Medical Academy, Uzbekistan
  • Karimbayev Shakhrambay Dexkanbayevich
    Associate Professor (Phd) Of The Department Of Public Health And Management, Tashkent Medical Academy, Uzbekistan
  • Tanisha Rahim
    Student Foreign Faculty Tashkent Medical Academy, Uzbekistan

DOI:

https://doi.org/10.37547/ajbspi/Volume03Issue05-04

Keywords:

Primary Central Nervous System malignancies clinical trial design trends trial accrual

Abstract

Limitations in trial design, accrual, and data reporting impact efficient and reliable drug evaluation in cancer clinical trials. These concerns have been recognized in neuro-oncology but have not been comprehensively evaluated. We conducted a semi- automated survey of adult interventional neuro-oncology trials, examining design, interventions, outcomes, and data availability trends. Trials were selected programmatically from ClinicalTrials.gov using primary malignant CNS tumour classification terms. Regression analyses assessed design and accrual trends; effect size analysis utilized survival rates among trials investigating survival.


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ABSTRACT

Limitations in trial design, accrual, and data reporting impact efficient and reliable drug evaluation in cancer clinical

trials. These concerns have been recognized in neuro-oncology but have not been comprehensively evaluated. We

conducted a semi- automated survey of adult interventional neuro-oncology trials, examining design, interventions,

outcomes, and data availability trends. Trials were selected programmatically from ClinicalTrials.gov using primary

malignant CNS tumour classification terms. Regression analyses assessed design and accrual trends; effect size

analysis utilized survival rates among trials investigating survival.

KEYWORDS

Primary Central Nervous System malignancies; clinical trial design trends; trial accrual; treatment effect size

assumptions; leveraging of trial registry data. Interdisciplinary; Iran; NOSC; brain tumours; neuro-oncology.

Research Article

AWARENESS AMONG PEOPLE BASED ON NEURO ONCOLOGY

Submission Date:

May 09, 2023,

Accepted Date:

May 14, 2023,

Published Date:

May 19, 2023

Crossref doi:

https://doi.org/10.37547/ajbspi/Volume03Issue05-04


Mirkhamidova Sevara Mirmakhmudovna

Assistant Of The Department Of The Public Health And Management, Tashkent Medical Academy, Uzbekistan

Muyassarova Mukhabbat Mukhammadiyevna

Senior Teacher Of The Department Of Public Health And Management, Tashkent Medical Academy, Uzbekistan

Abdurashitova Sharafat Abdumajidovna

Senior Teacher Of The Department Of Public Health And Management, Tashkent Medical Academy, Uzbekistan

Karimbayev Shakhrambay Dexkanbayevich

Associate Professor (Phd) Of The Department Of Public Health And Management, Tashkent Medical Academy,
Uzbekistan

Tanisha Rahim

Student Foreign Faculty Tashkent Medical Academy, Uzbekistan

Journal

Website:

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

Copyright:

Original

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

attributes

4.0 licence.


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INTRODUCTION

Despite important advances in the molecular

understanding of malignant primary CNS tumours and

efforts to translate these advances into clinical benefit,

there has been limited progress in treatments across

neuro-oncology. Therapeutic drug development in

neuro- oncology is complicated by a unique set of

challenges including vast inter- and intra-tumoral

heterogeneity, complex interactions of the tumour

with the neuronal and tumour microenvironments, the

existence of the blood-brain/tumour barrier which

limits the penetrability of compounds, a distinct and

isolated immunologic locale, and the inability of

preclinical models to recapitulate this complexity.

Beyond scientific challenges, past studies have pointed

to shortcomings in clinical trial design (including a lack

of randomization, absence of controls, overly

restrictive eligibility criteria, and low accrual) as

contributing to the translation failure of potentially

promising therapies.

discussions have highlighted the need to address

design challenges through novel trial designs that the

scope of our survey included past, ongoing, and

planned trials assessing interventions on any malignant

CNS tumour diagnoses; we evaluated trial design

characteristics, estimated treatment effect size

assumptions implied by the trial designs, overviewed

the extent of data availability, and summarized

reported efficacy and toxicity of interventions.

Research and practice of neuro-oncology compiles

clinical neuroscience expertise from neurosurgery,

radiation oncology, neuroradiology, medical oncology,

neuropathology and related disciplines to optimize

planning and therapy in central nervous system

malignancies. Such an interdisciplinary context

prompted health-care providers from all related

disciplines to establish the Neuro-Oncology Scientific

Club (NOSC) in Iran and let it flourish since 3 years ago.

With the advent of advanced technologies and

through continued share of experience, NOSC

members have tried to provide more integrated

diagnoses and therapeutic care to brain tumour

patients across the country. NOSC activities revolve

around some key tenets including dissemination of

education and updates, facilitation of institutional

collaborations; data registry and patients' awareness.

By virtue of recent insights on molecular

characterization of brain tumours such as codeletion of

chromosomes 1p and 19q in anaplastic gliomas and O6-

methylguanine-DNA

methyltransferase

(MGMT)

promoter methylation in glioblastoma, a range of

translational research is being followed within NOSC.

The most recent NOSC meeting which was held in

Tehran, recapitulated main advances and dealt with

the current debates on functional neurosurgery,

biological markers and neuroimaging, risk prediction

models in high grade gliomas and clinical issues in


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paediatric neuro-oncology. This article gives an

overview of current hotspots in neuro-oncology

research and practice which are pursued within NOSC

[1].

Survivorship has become a significant topic within

oncologic care. The tools and means by which the

provision of survivorship care can be implemented and

delivered are in development and are the focus of

significant research oncology-wide. These tools and

methods include innovations of survivorship care

delivery, survivorship care plans, and improving

communication among all stakeholders in an individual

patient's care as the means to elevate health-related

quality of life. The merits of these survivorship care

provisions in the field of neuro-oncology and its

patients' exigent need for more patient-centric care

focused on living with their illness are discussed. Brain

metastases occur commonly in patients with advanced

solid malignancies. Yet, less is known about brain

metastases than cancer-related entities of similar

incidence. Advances in oncologic care have heightened

the importance of intracranial management. Here, in

this consensus review supported by the Society for

Neuro-Oncology (SNO), we review the landscape of

brain metastases with particular attention to

management approaches and ongoing efforts with

potential to shape future paradigms of care [2].

Adolescents and young adults (AYA) comprise a

specific group of oncology patients with a distinct

biological and epidemiological spectrum of central

nervous system neoplasms. It has been well

documented that they differ clinically, especially in

relation to prognosis and chemotherapy tolerance;

however, the underlying reasons for this are unclear.

Recent advances in the genomics of both childhood

and adult brain tumors have provided new

explanations and insights into the previously described

age-dependent heterogeneity. Herein, we summarize

the current state of the AYA population in neuro-

oncology, specifically how biological advances can help

personalize therapy for this unique group of patients.

The management of brain tumors developed in

adolescents and young adults (AYAs) is challenging

because of their histological heterogeneity and low

incidence. The brain tumor and its treatment

interventions can negatively affect neurological,

neurocognitive, and endocrinological function, and

dramatically affect the circumstances of AYA patients

progressing to further education, employment, and

marriage. Specific support is thus necessary to

maintain the quality of life (QOL) of AYA brain tumor

patients. AYA patients and survivors require active

intervention and support for returning to school or

work, progressing to further education, finding

employment, and preserving fertility. Recent cancer

genome profiling revealed that AYA gliomas include

pediatric- and adult-type genetic alteration. Insights

into the biology underlying the distribution of tumors

in AYAs may influence the development of prospective

trials. A more individualized view of brain tumors may


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influence stratification of patients' in future clinical

studies as well as selection for molecular targeted

therapy.[3]

Selection and measurement of appropriate outcomes

in clinical trials is critical. A trial or study outcome is a

measurable variable examined in response to a

treatment or intervention, to assess effectiveness or

harm. Traditional measures of response or time-

dependent metrics are important (Eg., radiological

tumor response or survival), but are somewhat limited

because they fail to characterize the functional or

symptomatic effect of the tumor on the person.

Outcomes should measure, either directly or indirectly,

how patients feel, function, and survive. Patients want

to live longer, but not necessarily at the expense of

quality of life.

The US Food & Drug Administration (FDA) describe

four categories of clinical outcome assessment (COA):

patient-reported (eg, health-related quality of life by

questionnaire), clinician-reported (eg, performance

status), observer-reported (eg, informal caregivers), or

performance

outcomes

(eg,

neurocognitive

tests).Brain tumor clinical trials increasingly include the

measurement of patient-reported outcomes, but the

level of reporting may be suboptimal.

COS should only be developed for neuro-oncology if

there is a clearly identified need and future uptake is

anticipated. Examples of need include standardizing

outcomes to allow meta-analysis and generation of

new knowledge, or identifying outcomes of core

importance to patients that are not currently

measured in clinical trials

a scenario which may result

in treatment recommendations that are not

acceptable to patients. COS are increasingly being

developed for routine practice which may also justify

need. Future uptake requires broad engagement of

healthcare professionals conducting neuro-oncology

research. The COS should be widely disseminated

through conference presentations, publications, and

communication with policy makers, charities, and

patient organizations [4].

The Core Outcome Measures in Effectiveness Trials

(COMET) initiative brings together people interested in

the development and application of COS. New COS

projects should be registered, and if the same COS are

listed as under development by another research

group or if overlap exists, COMET facilitates

communication between research groups to promote

collaboration and prevent duplication of effort and

research waste [6].

The existence of a COS with similar scope to one

planned

does

not

constitute

an

absolute

contraindication to its development, and may be

beneficial within neuro-oncology. Consider the

hypothetical situation of a disease-specific COS being

developed for pediatric medulloblastoma, and a

researcher developing a broader COS defining

outcome measures for clinical trials of surgically

managed posterior fossa tumors. The disease-specific

COS may include outcomes highly relevant to


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medulloblastoma key stakeholders, eg, disease-

specific

treatments

such

as

adjuvant

chemoradiotherapy. However, a broader COS that

reflects surgical intervention for a particular

anatomical location (ie, posterior fossa), will identify

adverse events associated with surgery that will be

relevant to other key stakeholders, including those

invested in medulloblastoma. The combination of a

disease-specific and treatment-specific COS will cover

outcomes of relevance to all key stakeholders [7].

CNS tumors are the most common solid tumor in those

aged 0

19 years, represent 6% across all ages, and are

the most common cause of cancer death in this

population. Pediatric brain tumors are associated with

high morbidity which may have lifelong consequences

for survivors, both from the disease and treatment.

Classifying and reporting postoperative morbidity in

pediatric brain tumors is challenging. The disease area

is highly heterogeneous, anatomically distributed, and

associated with location-specific morbidity. Pathology

may also dictate the aggressiveness of surgical intent

and the level of postoperative morbidity which is

acceptable to achieve adequate disease control. In

addition, presurgical neurological condition and co-

morbidity status can be variable at diagnosis and may

contribute to cumulative postoperative morbidity.

Finally, many children will go on to have systemic

therapies or radiotherapy which also affect tumor-

associated morbidity. Transparent and reproducible

morbidity reporting helps to manage patient and

parent expectations, provides a standardized way to

compare adverse events in clinical or research studies

and provides a benchmark to compare clinical services.

The application of existing morbidity tools to report

pediatric brain tumor surgery harms is inadequate. The

COMBAT project will develop a core set of adverse

outcomes for children undergoing tumor biopsy and/or

resection which are determined to be of importance to

all key stakeholders [5].

Neuro-oncology and palliative care: a challenging

interface Palliative care is defined by the World Health

Organization as “an approach that improves the

quality of life of patients and their families facing the

problems associated with life-threatening illness,

through the prevention and relief of suffering by

means of early identification and impeccable

assessment and treatment of pain and other problems,

physical, psychosocial and spiritual.” Palliative care

encompasses symptom control and provision of

practical support to patients and their carers

from

first referral through terminal care and death and into

bereavement.

The goal of palliative care is to maximize quality of life,

drawing on the skills of a multidisciplinary team to help

the patient live as actively as possible whilst neither

hastening nor postponing death. Palliative care can

play an important role in the management of

malignant and nonmalignant conditions, in both

inpatient and outpatient settings [6].

MATERIALS AND METHODS


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This study used an online google forms questionnaire

as the instruments. Invitation to people in this survey

was sent through via email and among social media

platforms. It was sent this way because everyone

nowadays are on social media platforms it would be

easy to spread awareness in this way. Therefore, using

Google form to reach each participant is the best

choice.

The target respondents are the young people of

Tashkent, Uzbekistan and India under the age of 25

because the young people ratio are more in this area

and they need a good awareness among them . The

questions in the developed questionnaire were

distributed for this pilot to test the awareness of public

on neuro-oncology. The population of this survey was

102 members. This work is done to create awareness

among people on neuro oncology. The search for

literary sources was carried out using the bibliographic

databases Web of Science, Scopus, DBLP, PubMed.

When selecting sources, they paid attention to

experimental articles, literary reviews, the number of

their citations over the past year.

RESULTS

The survey were conducted using information and

communication technologies, booklets, brochures,

presentations, etc. All were asked to answer using a

specially designed public awareness on neuro-

oncology questionnaire. The table below show the

results of the survey. People of about 102 were under

survey. Among them, Male (40.8%), Female (59.2%) and

Others (0%)

MALE

59%

FEMALE

41%

GENDER


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The age of the participants was from 18-25 years old (78.4%), from 26-40years old (13.7%), from 41-60 years old (7.8%)
and from 60 and above (0%). The respondents are mostly under 25 because my survey reached to most of the young

people whom I’m in contact with. Even

-though , I also received response from middle-aged people through my family

members and relations in India .

Most of the participants of the survey responded the correct answer ‘No’(78%).

So the result tells that the disease is not contagious by the people. Even-though, some people are not aware that it is

not infectious and answered as ‘Yes’ (11%)

Under 18

20%

from 25-30

78%

above 45

2%

AGE

yes

11%

no

78%

Don’t know

11%

Do you think its infectious or non infectious?


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So more than half (55%) of the people in my survey are suffering from any kind of brain related diseases. So this

portrays that these diseases are becoming familiar in our life cycle nowadays.

Nowadays Headache (37%) became an usual symptom among teenagers and adults because of lots of stress they go

through in this era. Due to this the cycle continues as Weakness (35%) ,Change in personality (12%) ,Nausea (9%) and

goes on.

Most of the people doesn’t know about Neuro

-oncology and they are not aware about this disease.

yes

55%

no

36%

maybe

9%

Are you suffering from any brain diseases or any type of

tumours or brain cancer?

weakness

35%

seizures

2%

Difficulty in walking

5%

changes in

personality

12%

Nausea

9%

Headaches

37%

Are you going through any of these symptoms?


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It’s not a prevalent disease in this era because people never share that they have any oncology disease (69%).

Yes

30%

No

69%

Maybe

1%

Have you seen people suffering from this around you?

yes

42%

No

58%

Are you awarre about Neuro oncology?


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MRI Scan are becoming very common but even then people

get fear while performing those tests so they don’t prefer

to take tests even though they have the related symptoms so that we got the answer mostly as ‘no’(69%)

yes

30%

no

69%

maybe

1%

Have you gone through any test or MRI/scannings?

Yes

16%

no

84%

Did you consult a doctor ?


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Moving to Neurologist now is not usual because most of the people said ‘no’ (84%)

. They move only if the general

doctor gives an expert opinion.

No relevant disease observed so ultimately they prefer no (90%) medications. Very rare case are prevalent so they

might take medications (10%).

yes

10%

no

90%

Are you taking medications?

26.20%

62.10%

11.70%

Do you think major death cases are due to cancers?

Yes

no

maybe


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In this survey we can see most of the people knew

about neuro oncology and its common symptoms.

Tumors, brain cancers is a common neurological

disorder characterized by recurrent headaches.

Typically, the associated symptoms affects a person so

much as it’s all basic signs a p

erson can suffer from

nausea, difficulty in walking, headaches, changes in

personality etc. The pain is generally made worse by

physical activity during an attack, although regular

physical exercise may prevent future attacks. Up to

one-third of people affected have aura: typically, it is a

short period of visual disturbance that signals or

harmful radiation will effect it. Occasionally, aura can

occur with little or no following symptoms ,but not

everyone has this symptoms.

DISCUSSION

When analyzing the efficiency of knowledge

assimilation, the compared options, in contrast to the

analysis of minimizing costs are characterized by

greater or lesser, but not equivalent, efficiency.

In this regard, it is important to assess the degree of

feasibility of the analysis, depending on the level of

reliability of the data. The test results were expressed

in points Participants' results were calculated using

Microsoft Excel software. The assessment of the

effectiveness of the assimilation of knowledge was

calculated based on the application of the proposed

methodological recommendation in practice Thus,

each participant of the survey, on average. Increased

his theoretical and practical level of knowledge in the

field of Neuro Oncology and it's prevention by almost

half.

CONCLUSION

Its concluded from my survey also that many people

nowadays are going through common symptoms but

weren’t aware about it. Now after participating in my

survey they would have got more awareness than

before. If people are receiving any kind of symptom

they should obviously consult the doctor as soon as

possible. They shouldn’t take risk in it because the

death rate in this case are literally very high and no

proper medication can work if the condition goes out

of hand .

RECOMMENDATION

Avoid environmental hazards such as smoking and

excessive radiation exposure

Manage stress

Relaxation techniques like meditation, yoga and

mindful breathing can help

Eat on a regular schedule

Drink lots of fluids

Get plenty of rest

Get regular moderate exercise

Ask your doctor about preventive medicines if you

get

Try getting lots of oxygen

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Srikandarajah N, Taphoorn MJB, Watts C,

Weller M, Williamson PR, Zadeh G, Zamanipoor

Najafabadi AH, Jenkinson MD. Opportunities

and challenges for the development of "core

outcome sets" in neuro-oncology. Neuro

Oncol. 2022 Jul 1;24(7):1048-1055. doi:

10.1093/neuonc/noac062. PMID: 35287168;

PMCID: PMC9248398.

7.

Lin E, Rosenthal MA, Le BH, Eastman P. Neuro-

oncology and palliative care: a challenging

interface. Neuro Oncol. 2012 Sep;14 Suppl 4:iv3-

7.

doi:

10.1093/neuonc/nos209.

PMID:

23095828; PMCID: PMC3480249.

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