Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jul;5(4):e341.
doi: 10.1002/edm2.341. Epub 2022 Jun 6.

Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

Phillip Yeoh  1   2 , Wladyslawa Czuber-Dochan  1 , Simon Aylwin  3 , Jackie Sturt  1
Affiliations

Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

Phillip Yeoh et al. Endocrinol Diabetes Metab. 2022 Jul.

Abstract

Introduction: Adrenocortical carcinoma (ACC) is a rare cancer with an annual incidence of 0.7-2 cases per million population and 5-year survival of 31.2%. Adrenal insufficiency (AI) is a common and life shortening complication of ACC, and little is understood about how it impacts on patients' experience.

Objective: To understand patients' lived experience of the condition, its treatment, care process, impact of AI on ACC wellbeing, self-care needs and support.

Methods: Systematic review of MEDLINE, EMBASES, CINAHL, PsycINFO and Open Grey for studies published until February 2021. All research designs were included. The findings underwent a thematic analysis and narrative synthesis. Studies quality was assessed using mixed method assessment tools.

Results: A total of 2837 citations were identified; 15 titles with cohort, cross-sectional, case series and case report study designs met the inclusion criteria involving 479 participants with adrenal insufficiency secondary to adrenocortical carcinoma (AI/ACC). Quantitative research identified impacts of disease and treatment on survivorship, the burden of living with AI/ACC, toxicity of therapies, supporting self-care and AI management. These impact factors included adjuvant therapies involved and their toxicities, caregivers/family supports, healthcare and structure support in place, specialist skill and knowledge provided by healthcare professional on ACC management. No qualitative patient experiences evidence was identified.

Conclusion: ACC appears to have high impact on patients' wellbeing including the challenges with self-care and managing AI. Evidence is needed to understand patient experience from a qualitative perspective.

Keywords: Adrenocortical carcinoma; adrenal insufficiency; lived experience; systematic review; wellbeing.

PubMed Disclaimer

Conflict of interest statement

The authors have no financial or non‐financial competing interests to declare.

Figures

FIGURE 1
FIGURE 1
PRISMA flow chart
See this image and copyright information in PMC

References

    1. Kerkhofs TMA, Verhoeven RHA, van der Zwan JM, et al. Adrenocortical carcinoma: a population‐based study on incidence and survival in Netherland since 1993. Eur J of Cancer. 2013;49:2579‐2586. - PubMed
    1. Gatta G, Capocaccia R, Botta L, et al. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet ‐ a population‐based study. Lancet Oncol. 2017;18:1022‐1039. - PubMed
    1. Parikh PP, Rubio GA, Farra JC, Lew JI. Nationwide analysis of adrenocortical carcinoma reveals higher perioperative morbidity in functional tumors. Am J Surg. 2018;216:293‐298. - PubMed
    1. Bertagna C, Orth DN. Clinical and laboratory findings and results of therapy in 58 patients with adrenal tumours admitted to a single medical center (1951 to 1978). Am J Med. 1981;71:855‐875. - PubMed
    1. Fassnacht M, Allolio B. Clinical management of adrenocortical carcinoma. Best Pract Res Clin Endocrinol Metab. 2009;23:273‐289. - PubMed

Publication types

MeSH terms