Patient and Partner Perspectives on Health-Related Quality of Life in Adrenocortical Carcinoma

Abstract

Little is known about the impact of adrenocortical carcinoma (ACC) on health-related quality of life (HRQoL), and no disease-specific questionnaire exists. This qualitative study aimed to identify relevant domains of HRQoL for patients with ACC. In 2 focus group interviews, we discussed concerns regarding living with ACC and its treatments. The first group consisted of 6 patients on mitotane therapy and their partners or relatives, the second group of 4 patients after surgery alone and their partners. Inductive qualitative content analysis was used to analyze the interviews. We identified 4 domains related to HRQoL in patients with ACC, namely physical complaints, mental consequences, social consequences, and functional limitations. For example, physical complaints included symptoms of the disease and side effects of mitotane therapy; mental consequences included feeling insecure and living from scan to scan; and functional limitations included daily activities and mobility. We further found that patients’ experiences with the health care system and health care professionals and partner perspectives influence HRQoL. In conclusion, ACC has a large impact on HRQoL in 4 domains. These results can be used to improve communication about HRQoL issues. We will use our findings to generate a disease-specific questionnaire to measure HRQoL in patients with ACC.

EDP-mitotane in children: reassuring evidence of reversible side-effects and neurotoxicity

“…Cognitive impairment in adults usually presents with confusion, decreased concentration and memory impairment. Psychological effects have been reported with mood swings, panic attacks, burn-out and even clinical depression [ 37 ]. These neurotoxic effects appear to be partly or completely reversible after cessation of mitotane, same as in children [ 15 , 38 , 39 ].…”

Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry

“…In the first phase, a comprehensive list was composed of potential HRQoL issues that patients with ACC might face. This was done using a systematic literature search and focus group interviews, of which the methods and results can be found in more detail in previous publications [6,8]. In short, we found 6 studies that assessed HRQoL in patients with ACC and listed the reported issues.…”

“…Patients with ACC experience many combinations of issues which can impair HRQoL [8]. Examples of these issues are mitotane side-effects, hormone excess, problems with sexuality, and concerns about scan results.…”

Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

“…Several studies reported that higher replacement dose of glucocorticoid was required to treat AI related to ACC (AI/ACC) and to prevent adrenal crisis, compared with other causes of AI 14–16 . Whilst qualitative data on living with ACC is available, a scoping review revealed no qualitative patient experience evidence for living with AI related to ACC 17 . This systematic review aimed to understand patient lived experience and wellbeing in AI secondary to ACC using evidence from a variety of study designs and thereby extract evidence related to the impact and management of this condition on patient wellbeing to inform a holistic approach to person‐centred care.…”