423O - Study of psycho-social profile of caregivers in teenage and young adult (TYA) cancer patients: Indian perspective

Abstract

Background: Teenage and Young Adult (TYA) cancer patients bring to cancer experience several unique psychosocial circumstances. Along with illness related stressors, TYAs face rapid social, biological, and cognitive changes, rendering them reliant on their caregivers. The purpose of this study is to determine the demographic, psycho-social profile and impact of caregiving in primary caregivers of Teenage and Young Adult Cancer patients, exploring their personal narratives of the cancer experience looking back on the entire experience from diagnosis, through treatment, and beyond at a rural cancer centre in India. Methods: Our study examines responses of 200 TYA cancer caregivers(TCGs) to pretested structured proforma including questionnaire on various aspects of care-giving between September 2016 and April 2018. Respondents must have self-identified as an unpaid primary TCG either currently or at some point in twelve months prior to study period. Results: TCGs have diverse backgrounds and characteristics. Majority are women(66%), 78% in age group 18-49yrs and most(58%) have less than a high school certificate. Majority(60%) from rural area, 13% required change in residence and 64% from lower/upper lower socioeconomic status. On average, TCGs help their recipient with 5 out of 9 activities of daily living(ADL) and 82% of TCGs required help with key activities. Health status reported as fair/poor by 36%. On average, 32% reported anxiety levels, whereas depression, fatigue and sleep disturbances reported by 25%,37% and 34% respectively, each of 3 on a 5 point scale. 22% reported as not satisfied with their social activity. These factors led to delay in diagnosis in 8%, delay in treatment initiation in 10%, non-adherence to treatment in 10% and 6% abandonment rate. Conclusions: To date, there is a dearth of research examining effects of providing care for a TYA with cancer in developing countries, and India in particular, where family members are more important resource for healthcare. TCGs data are vital for development and implementation of future programs to improve caregiver and patient health throughout the care trajectory. Legal entity responsible for the study: Department of Medical Oncology, Sri Aurobindo Institute of Medical Sciences. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.