Oral Presentation ESA-SRB-ANZBMS 2024 in conjunction with ENSA

Background: Adrenocortical carcinoma (ACC) is a rare and aggressive cancer of adrenal glands with an incidence worldwide around 0.7-2 cases per million per year in adult populations. The median age at diagnosis is 56 years old, with women and white Caucasians being more frequently affected. Overall median survival rate can be as low as 17 months with 5-year survival rate around 31.2%. Our systematic review identified the lack of qualitative study on the experiences of ACC. Consequently, an explorative approach using interpretative phenomenology couple with Van Manen hermeneutic methodology was used to explore the meanings of living with ACC. I have 24 years of immersion in looking after people living with ACC. This methodology allows me to use my experience, knowledge, and skills to make sense of people’s experiences.

Aims: The study aims to investigate the lived experience of people diagnosed with ACC. The study objectives are: i) to understanding meaning and impact of ACC on physical, emotional, mental and psychological on people’s wellbeing; ii) to understand how they manage their condition; iii) to find out their sources of help and support of living with ACC.

Method: Twenty-one participants living with ACC were purposively recruited and individually interviewed online using semi-structured questions. They were recruited from ACC support groups from US, Canada, UK, EU, Africa and Australia. Theory on survivorship by Mullan (1985) and Bowen Family System Theory (Kerr & Brown, 1988) were used to guide interview process. Lived space (spatiality), lived self-other (relationality), lived body (corporeality), and lived time (temporality) by van Manen (1997, 2014) and concept of resilience were added into the analysis process to find the impact and meaning of ACC on people’s lives. The interviews were transcribed and analysed using thematic analysis.

Findings: Five key main themes and its subthemes that emerged are:

• Existential conundrum with ACC with subthemes of living in uncertainty, lives on knife’s edge, coping and protecting wellbeing.
• Inadequate care & supports with subthemes of loneliness and being left behind, tensions with self and with others.
• Rollercoaster life with subthemes of enduring the disease burden, weaving through the trauma.
• Anchoring ways for survival with subthemes of in the illusion of control, knowing me, knowing ACC.
• Living and moving forward with subthemes of finding perspectives and priorities, create moments of happiness.

Living with ACC and its comorbidities of adrenal insufficiency were challenging physically, emotional, psychologically, socially and existentially. Those at early stage are at risk of suicide. Consequently, greater help and support are needed to support the survivorship of those living with the disease.

Conclusion and recommendation

ACC is a complex, complicated and destructive disease. Better research is needed to understand the impacts of its treatment on people’s lives. The care for these people needs to focus on their needs and resilience to help them coexist with it. Any interventions that build on these key points could help to improve their experiences and outcomes to help them to have a better quality of life.