Prevention and Management of Adrenal Crisis in Children and Adults

Llahana, Sofia; Zopf, Kathrin; Mitchelhill, Irene; Grossman, Ashley

doi:10.1007/978-3-319-99817-6_62

Cited by 2 publications

(6 citation statements)

References 46 publications

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“…Healthcare professionals recognized that preventing adrenal crisis is one of the main goals for patient on AI treatment 40 . AI education is paramount for patients and their caregivers to anticipate, recognize and intervene early to prevent or reduce the occurrence of adrenal crisis 40,41 . Patients with AI related to ACC expressed their frustration that simple flu could lead to hospitalization 17 .…”

Section: Discussionmentioning

confidence: 99%

“…Patients with AI without ACC who received AI education self‐reported that they were better in recognizing signs and symptoms of their adrenal crisis immediately after the training rather than 6–9 months afterwards 44 . Thus, there is a need to provide a structured education, continuous training and support to AI related to ACC by drawing from the existing knowledge, skills and modes identified to support self‐efficacy and self‐care for people on AI treatment 41,45 …”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“… 40 AI education is paramount for patients and their caregivers to anticipate, recognize and intervene early to prevent or reduce the occurrence of adrenal crisis. 40 , 41 Patients with AI related to ACC expressed their frustration that simple flu could lead to hospitalization. 17 Patients with non‐ACC related AI who were given AI education and were able to self‐inject glucocorticoid during emergency had quicker symptoms improvement and were more likely to get treated in an outpatient setting compared with those who did not self‐inject.…”

Section: Discussionmentioning

confidence: 99%

“…44 Thus, there is a need to provide a structured education, continuous training and support to AI related to ACC by drawing from the existing knowledge, skills and modes identified to support self-efficacy and self-care for people on AI treatment. 41,45 People on AI treatment with specific beliefs about the necessity of AI replacement including its concerns about adverse effects were found to have more negative illness perceptions. 46 Endocrine nurses can play a pivotal role in addressing these beliefs and concerns through AI/ACC education, supporting their physical symptoms, addressing emotional, mental, and psychological needs and wellbeing by coaching and signposting.…”

Section: Findings Compared With Wider Evidencementioning

confidence: 98%

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Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

Yeoh

Czuber‐Dochan

Aylwin

et al. 2022

Endocrino Diabet & Metabol

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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 OpenGrey 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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Findings Compared With Wider Evidencementioning

confidence: 98%

See 3 more Smart Citations

Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

Yeoh

Czuber‐Dochan

Aylwin

et al. 2022

Endocrino Diabet & Metabol

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Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol

Llahana,

Mulligan,

Hirani

et al. 2023

Front. Endocrinol.

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IntroductionMost patients with Adrenal insufficiency (AI) require lifelong glucocorticoid replacement. They need to increase glucocorticoids during physical illness or major stressful situations and require parenteral hydrocortisone in the event of an adrenal crisis. Patients with AI have impaired quality of life and high mortality; approximately 1 in 6-12 patients are hospitalised at least once/year from a potentially preventable adrenal crisis. Adoption of self-management behaviours are crucial; these include adherence to medication, following “sick day rules” and associated behaviours that aid prevention and treatment of adrenal crisis such as symptom monitoring, having extra tablets, carrying a medical-alert ID and injection kit, and self-injecting when necessary. Current patient education is ineffective at supporting self-management behaviour change or reducing adrenal crisis-related hospitalisations. This research study aims to gain an in-depth understanding of the barriers and enablers to self-management for patients with AI and to develop an evidence-based digital self-management behaviour change intervention.MethodsThe study is conducted in accordance with the MRC Framework for developing complex interventions. Underpinned by the Behaviour Change Wheel (BCW), the Theoretical Domains Framework (TDF), and the Person-Based Approach, this research will be conducted in two phases: Phase 1 will involve a sequential qualitative/quantitative mixed-methods study involving focus group interviews followed by a cross-sectional survey with patients with AI recruited from patient advocacy groups and endocrine clinics in the UK. Phase 2 will develop the Support AI, a website-based digital behaviour change intervention (DBCI) informed by Phase 1 findings to support self-management for patients with AI. The most appropriate behaviour change techniques (BCTs) will be selected utilising a nominal group technique with an Expert Panel of 10-15 key stakeholders. The design of the Support AI website will be guided by the Person-Based Approach using an Agile iterative “think-aloud” technique with 12-15 participants over 3 usability testing iterations.ConclusionA theory- and evidence-based digital behaviour change intervention will be developed which will be tested in a feasibility randomised trial following completion of this study. The projected benefit includes cost-effective health care service (reduced hospitalisations and demand for specialist services) and improved health outcomes and quality of life for patients with AI.

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Prevention and Management of Adrenal Crisis in Children and Adults

Cited by 2 publications

References 46 publications

Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

Lived experience of people with adrenocortical carcinoma and associated adrenal insufficiency

Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol

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