Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency
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...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2022-07-01
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| Series: | Endocrinology, Diabetes & Metabolism |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/edm2.341 |
| _version_ | 1818158834327224320 |
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| author | Phillip Yeoh Wladyslawa Czuber‐Dochan Simon Aylwin Jackie Sturt |
| author_facet | Phillip Yeoh Wladyslawa Czuber‐Dochan Simon Aylwin Jackie Sturt |
| author_sort | Phillip Yeoh |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-11T15:36:23Z |
| format | Article |
| id | doaj.art-0eaf5b4f1bab455999d3f4ab724b2692 |
| institution | Directory Open Access Journal |
| issn | 2398-9238 |
| language | English |
| last_indexed | 2024-12-11T15:36:23Z |
| publishDate | 2022-07-01 |
| publisher | Wiley |
| record_format | Article |
| series | Endocrinology, Diabetes & Metabolism |
| spelling | doaj.art-0eaf5b4f1bab455999d3f4ab724b26922022-12-22T00:59:56ZengWileyEndocrinology, Diabetes & Metabolism2398-92382022-07-0154n/an/a10.1002/edm2.341Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiencyPhillip Yeoh0Wladyslawa Czuber‐Dochan1Simon Aylwin2Jackie Sturt3Florence Nightingale Faculty of Nursing Midwifery & Palliative Care. King's College London London UKFlorence Nightingale Faculty of Nursing Midwifery & Palliative Care. King's College London London UKDepartment of Endocrinology King's College Hospital London UKFlorence Nightingale Faculty of Nursing Midwifery & Palliative Care. King's College London London UKAbstract 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.https://doi.org/10.1002/edm2.341adrenal insufficiencyAdrenocortical carcinomalived experiencesystematic reviewwellbeing |
| spellingShingle | Phillip Yeoh Wladyslawa Czuber‐Dochan Simon Aylwin Jackie Sturt Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency Endocrinology, Diabetes & Metabolism adrenal insufficiency Adrenocortical carcinoma lived experience systematic review wellbeing |
| title | Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency |
| title_full | Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency |
| title_fullStr | Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency |
| title_full_unstemmed | Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency |
| title_short | Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency |
| title_sort | lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency |
| topic | adrenal insufficiency Adrenocortical carcinoma lived experience systematic review wellbeing |
| url | https://doi.org/10.1002/edm2.341 |
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