Harnessing Social Media to Develop Conceptual Domains of Quality of Life for Adolescents With Advanced Cancer.

Background: Many adolescents will not survive their cancer diagnosis and will live with advanced cancer (cancer i.e. difficult to cure). Due to the advancement of cancer therapies, many adolescents will live with advanced cancer for long periods of time. Enhancing QoL is a well-established goal of their clinical oncology and palliative care however, there has been little research to conceptualize QoL in ways meaningful to them. There has also been a lack of QoL research focused on the inclusion of their voices and experiences into QoL construct development.

Objectives: The aim of this study was to develop proposed conceptual domains of QoL relevant to adolescents with advanced cancer.

Methods: This study was a qualitative study grounded in Interpretive Description. We used social media content created by adolescents living with advanced cancer to inform the development of QoL domains. Adolescents are increasingly using social media to share their experiences and we believed social media would facilitate access to rich data.

Results: 235 social media posts recorded by 14 adolescents were included in the analysis. This analysis generated domains relevant to the QoL of adolescents with advanced cancer: (1) Perceived Health, (2) The Lived Body, (3) Emotional Wellbeing, (4) Normalcy, (5) Purpose and Direction and (6) Re-Orientation.

Conclusions: The QoL of adolescents with advanced cancer is poorly understood. This research has generated unique conceptual domains of QoL relevant to this population of adolescents. These concepts will inform the future development of a patient-reported outcome measure (PROM) that can measure their QoL.