Aim: Adrenocortical carcinoma (ACC) is a rare cancer with a poor prognosis and highly toxic treatment options. Little is known about how ACC impacts health-related quality of life (HRQoL) and no disease specific questionnaire exists. This qualitative study explores the impact of ACC on HRQOL in everyday life.
Method: In focus group interviews, we investigated patient concerns in living with ACC and its treatments. Two focus groups were held with 6 patients on mitotane therapy, 4 patients who received surgery only and their partners. The sample was heterogeneous in terms of age, gender, time since diagnosis, ENSAT stage, treatments and response. Interviews were transcribed verbatim. Qualitative content analysis was used to analyse the interviews.
Results: We found that HRQoL was impaired in three areas: (1) physical complaints, (2) mental and social consequences, and (3) limitation of activities.
- Physical complaints were characterized by symptoms of the disease, cortisol production and supplementation; recovery and complications after surgery; adverse effects of mitotane; difficulties with medication and long term consequences.
- Mental and social consequences included feeling insecure, living from scan to scan and influence on family life.
- Limitations in activities included daily activities, leisure activities and mobility.
HRQoL was further influenced by patients’ experiences with the healthcare system and healthcare professionals, which included approach and creating clear expectations. We discovered that the lives of the partners was also impacted by the disease, specifically due to feelings of insecurity and difficulties with seeing their partner suffer.
Conclusions: ACC had a large impact on HRQoL of our 10 patients. We produced a list of symptoms and functional limitations that patients with ACC find influential to HRQoL. Our findings will be used to generate a disease-specific questionnaire to measure HRQoL in ACC patients, to be used in addition to the EORTC-QLQ-C30 questionnaire.