{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T15:28:30Z","timestamp":1783524510858,"version":"3.55.0"},"reference-count":53,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,6,6]],"date-time":"2022-06-06T00:00:00Z","timestamp":1654473600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Endocrino Diabet &amp; Metabol"],"published-print":{"date-parts":[[2022,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Adrenocortical carcinoma (ACC) is a rare cancer with an annual incidence of 0.7\u20132 cases per million population and 5\u2010year 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>To understand patients' lived experience of the condition, its treatment, care process, impact of AI on ACC wellbeing, self\u2010care needs and support.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 2837 citations were identified; 15 titles with cohort, cross\u2010sectional, 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\u2010care 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>ACC appears to have high impact on patients' wellbeing including the challenges with self\u2010care and managing AI. Evidence is needed to understand patient experience from a qualitative perspective.<\/jats:p><\/jats:sec>","DOI":"10.1002\/edm2.341","type":"journal-article","created":{"date-parts":[[2022,6,7]],"date-time":"2022-06-07T06:44:59Z","timestamp":1654584299000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency"],"prefix":"10.1002","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7347-8801","authenticated-orcid":false,"given":"Phillip","family":"Yeoh","sequence":"first","affiliation":[{"name":"Florence Nightingale Faculty of Nursing Midwifery &amp; Palliative Care. 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