Comprehensive evaluation of genetic counseling and genetic testing in diagnosis and management of adult-onset hereditary cancer syndromes: A mixed method study.
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 发起方
- 入组人数
- 294
- 试验地点
- 1
- 主要终点
- Improve knowledge and awareness about genetic counseling and genetic testing for hereditary cancer syndromes
研究概览
简要总结
Genetic counseling and testing are currently considered the standard of care for hereditary malignancies, helping with therapy optimization and family screening. However, considerable barriers to deploying genetic counseling services in low- and middle-income countries limit their acceptance. These limitations include inadequate accessibility, a scarcity of skilled professionals, and a lack of awareness and expertise among both healthcare practitioners and patients. Existing research has consistently indicated a lack of awareness and comprehension of genetic counseling among stakeholders as a key barrier, underlining the need for tailored services. In India, developing and integrating cancer genetic counseling services into tertiary care hospitals is critical to overcome these limitations. This study seeks to address this gap by evaluating genetic counseling and broad-spectrum genetic testing in adult-onset hereditary cancers by quantitative and qualitative methods. By analyzing outcomes such as stakeholder knowledge and awareness, attitude and perception, the study achieves its primary goal of correcting educational gaps and encouraging informed decision-making. Furthermore, assessing health outcomes will provide crucial insights into the utility of these services, thereby giving valuable data to improve policy and practice. The burden of hereditary cancer syndromes (HCSs) is not well defined in India, and defining the mutational landscape leads to improved health benefits.
研究设计
- 研究类型
- Observational
入排标准
- 年龄范围
- 18.00 Year(s) 至 90.00 Year(s)(—)
- 性别
- All
入选标准
- •Patients over eighteen years and above with a histopathologically confirmed diagnosis of cancer referred by oncologists, with the majority fulfilling NCCN criteria, and willing to participate in the study.
- •Any family members who are first-degree relatives of an affected individual with the criteria as mentioned above, who are over 18 years and above.
- •Health care professionals like Surgical Oncologists, Radiation Oncologists, Palliative care Oncologists, Pediatric Oncologists, Gynecologists, and General surgeons who have experience of treating cancer patients for five or more years.
排除标准
- •Patients with paediatric onset cancers.
- •Patients not opting for genetic testing.
- •Patients and first-degree relatives with disability (where the term ‘person with disability’ has been defined under section 2(s) of The Rights of Persons with Disabilities (RPwD) Act, 2016).
- •No exclusion criteria for health care professionals.
结局指标
主要结局
Improve knowledge and awareness about genetic counseling and genetic testing for hereditary cancer syndromes
时间窗: 24 months
次要结局
- Improving patient outcomes and health outcomes.(Understanding experiences of genetic counseling and testing.)
研究者
Lakshmi Priya Rao
Kasturba Medical College and Hospital, Manipal.
