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ABSTRACT Background: Patient advocacy groups (PAGs) play a crucial role in connecting patients, researchers, clinicians, and clinical research. Equipping PAGs with the knowledge to raise awareness about clinical research through targeted educational programs will ultimately enhance their impact. In this questionnaire-based study, the knowledge, awareness, and perspectives on clinical research among PAGs as well as the outcome of their involvement in awareness program were explored. Methods: Unbox research was a cross-sectional questionnaire-based survey of 22 questions evaluating the knowledge, awareness, and perspectives of participants enrolled in Patient Advocates for Clinical Research (PACER) awareness program. The survey was followed by a FGD to explore the experiences of the participants with the PACER program. Results: Among 185 participants, 97.8% were aware about clinical research/trials and 90.3% understood clinical trials are conducted before any drug reaches market. Participants identified safety concerns (82.2%), limited knowledge (67.6%), and fear (58.9%) as key reasons for barriers for participation. Participants prioritized increased patient participation (59.5%), availability of more clinical trials (54.6%), and substantial investment in healthcare (51.9%) as key drivers for developing India’s healthcare system. About 88.6% of participants believed that involvement of PAGs in clinical trials will benefit the patients. The FGD revealed a significant progress by PAGs. The active involvement of PAGs led to their inclusion on ethics committees and helped enroll 14 patients in clinical trials within just six months. Conclusion: The study underscores the positive impact of programs like PACER in powering PAGs and other stakeholders. Increased knowledge, awareness, and collaboration led to significant outcomes for patients, clinicians, and researchers.

Background:Head and neck cancer constitute one-third of all cancers. Due to the complex nature of Head and Neck Cancer treatment, expenditure on cancer treatment are higher and the Quality of Life of patients is also compromised. The objectives of the study were to determine the time taken by patients for seeking care from registered medical practitioners, time to definitive diagnosis and treatment initiation, expenditure incurred, and Quality of Life. Methods: The present study was a cross-sectional descriptive involving outpatient with head and neck cancer reported to the department of radiotherapy, regional cancer center, JIPMER. The quality of life was assessed using validated FACT-H and N scales. Results:The preferred first contact for seeking care for most was the private sector (52%). The median (IQR) presentation interval, diagnostic interval, and treatment initiation interval were 36.5 (16 - 65.7), 14 (7 - 31.5), and 65.5 (45 - 104) days respectively. The average indirect cost incurred was INR 8424 (4095-16570) in JIPMER, which was spent over an average duration of 240 days. The median (IQR) wage loss by the patients and/or caregivers was INR18000 (5250-61575). The source of expenditure was mainly from their family savings (56%). Functional well-being was severely impaired. The patients with occupation, head of the family, and early stage of cancer had a statistically significant quality of life. Conclusion:The majority of the patients were diagnosed in the regional cancer center, JIPMER although their preferred first point of contact was private practitioners. The average time interval from diagnosis to treatment initiation was more than two months. The expenditure during the treatment was mainly because of indirect cost and wage loss. The functional quality of life was severely impaired for the majority of the cases.

The study was done with the aim of understanding the “Effect of Sleep Quality on Mental Health of Adults during COVID-19 Lockdown”. 136 adults aged between 18 to 32 years were selected through snowball sampling from social media platforms for being a part of the study sample. The Sleep Condition Indicator (Espie, 2014) and General Health Questionnaire (GHQ-12) (Goldberg and Williams, 1988) were used to measure their sleep quality and mental health. It was hypothesized that the sleep quality will have a significant effect on the mental health of adults. It was found out that sleep quality is a significant predictor of mental health. The researcher stated that clinicians and psychologists should investigate about the sleeping patterns and quality of sleep in patients reporting mental health issues, and screen sleeping disorders regularly in population to avoid development of mental health disorders.

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