Interventions for the prevention of adrenal crisis in adults with primary adrenal insufficiency: a systematic review

Shepherd, Lisa; Schmidtke, Kelly Ann; Hazlehurst, Jonathan; Melson, Eka; Dretzke, Janine; Hawks, Noel; Arlt, Wiebke; Tahrani, Abd A; Swift, Amelia; Carrick-Sen, Debbie

doi:10.1530/eje-21-1248

Cited by 5 publications

(3 citation statements)

References 41 publications

(164 reference statements)

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“…Given the low prevalence of Addison's disease and the variability in patient experiences, it is possible to individualise daily steroid management of Addison's disease and education plans to prevent adrenal crises. Shepherd et al (2022) discussed the use of behaviour change theory to aid in self-management rather than relying on a purely educational model. This was identified in previous work where some individuals with Addison's disease continued to have adrenal crises despite being well educated (Shepherd et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Addison’s Disease and Adrenal Crisis: A Phenomenological Study of the Patient Experience

Fostekew,

Andersen,

Amankwaa

2023

Nursing Praxis in Aotearoa New Zealand

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This study aimed to investigate the lived experiences and issues central to patients with Addison’s disease when they are hospitalised due to an adrenal crisis. Interpretive phenomenology was used to explore and understand the experiences of six participants with a diagnosis of Addison’s disease who had experienced one or more adrenal crises. Their shared experiences were analysed using Braun and Clarke’s thematic analysis. Three key themes arose from the analysis that explained participants’ experiences: responding, adjusting, and learning. The ‘Addison’s and adrenal crisis patient experience model’ was developed to illustrate how responding, adjusting, and learning impact the patient experience. To support future patients with Addison’s disease, this inquiry recommends education for healthcare practitioners in primary care and secondary services, particularly medical practitioners, nurse practitioners, and nurses who are likely to to aid treatment of adrenal crises. The development of a support group for people living with Addison’s disease to be able to connect and share experiences, was suggested by the participants. This in conjunction with education programmes may prevent adrenal crises and hospitalisations. The development of a clinical guideline is recommended to best support and instil confidence for healthcare practitioners, their patients and families. Te reo Maōri translation Te mate Addison me te tairaru repe kōihi: He mātainga whakaaro tūroro mō ōna wheako Ngā Ariā Matua Ko te whāinga o tēnei mātainga he tūhura i ngā wheako i te ao nei, me ngā take nunui ki ngā tūroro kua pākia e te mate Addison, ina kawea ki te hōhipera mō tētahi tairaru repe kōihi. I whakamahia te tikanga mātainga whakaaro wheako hei tūhura, hei rapu māramatanga hoki mō ngā wheako o ētahi tāngata tokoono whai wāhi mai kua tohua ki te mate Addison, kua pā mai hoki tētahi tairaru repe kōihi, neke atu rānei i te kotahi, ki a rātou. I tātaritia ō rātou wheako tiri mā te whakamahi i te tātaritanga tāhuhu a Braun rāua ko Clarke. E toru ngā tāhuhu i ara ake i te tātaritanga i whakamārama i ngā wheako o te hunga whai wāhi mai: te urupare, te panoni, me te ako. I whakawhanaketia te ‘tauira wheako tūroro mō te mate Addison me te tairaru repe kōihi’ hei whakaahua he pēhea te pānga o te urupare, te panoni, ki ngā wheako o te ākonga. Hei tautoko i ngā tūroro ka pāngia e te mate Addison ā ngā rā e tū mai nei, e whakahau ana tēnei tūhuratanga kia haere he akoranga mō ngā kaimahi hauora taumata tuatahi, taumata tuarua, otirā mō ngā tākuta, ngā tapuhi mātanga me ngā tapuhi tērā pea ka āwhina i ngā taurimatanga tairaru repe kōihi. I huatautia e te hunga whai wāhi te whakawhanaketanga o tētahi rōpū tautoko mō te hunga e noho tahi ana me te mate Addison kia āhei ai rātou te tūhono me te tiri wheako. Mā tēnei āhua, i te taha o ngā kaupapa mātauranga ka taea pea te ārai i ngā tairaru repe kōihi, me ngā nohonga ki te hōhipera. E tūtohutia ana te whakawhanaketanga o tētahi aratohu taurima tūroro kia tino pai ai te tautoko me te whakaū i te māia ki roto i ngā kaimahi taurimatanga hauora, ō rātou tūroro me ō rātou whānau hoki. Ngā kupu matua te mate Addison, tairaru repe kōihi, te tapuhi, te akoranga tūroro, ngā wheako tūroro, te mātainga whakaaro wheako

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Section: Discussionmentioning

confidence: 99%

Addison’s Disease and Adrenal Crisis: A Phenomenological Study of the Patient Experience

Fostekew,

Andersen,

Amankwaa

2023

Nursing Praxis in Aotearoa New Zealand

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“…However, assessment of outcomes such as behaviour change, and frequency of adrenal crisis or hospitalisations was not reported. The authors concluded that there is a need to develop behaviour change interventions to support patients with AI to prevent adrenal crisis ( 32 ).…”

Section: Introduction: Self-management For Patients With Adrenal Insu...mentioning

confidence: 99%

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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“…The adrenal crisis incidence remains high, particularly for people with primary adrenal insufficiency, despite the behavioral intervention's introduction (Shepherd et al 2022). The adrenal insufficiency new presentation symptoms can range from nonspecific minor symptoms to a life-threatening adrenal crisis with hemodynamic instability (Ten et al 2001, Charmandari et al 2014.…”

Section: Introductionmentioning

confidence: 99%

Diagnosis and Management of Adrenal Crisis in 46XX Congenital Adrenal Hyperplasia Infant

Rochmah

Faizi²,

Kusumastuti³

et al. 2022

FMI

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Highlight: The diagnosis and therapy of Congenital Adrenal Hyperplasia (CAH) children with Adrenal crisis (AC) case report. Adrenal crisis (AC) is a life-threatening emergency that contributes to the high death rate of children with adrenal insufficiency. The early detection and prompt treatment can improve the outcomes of patients with CAH and AC. Abstract: Adrenal crisis is the acute complication of the patient with congenital adrenal hyperplasia. Congenital adrenal hyperplasia (CAH) is a rare condition. Children with CAH commonly come to the emergency room due to acute complications. The condition has high mortality and thus needs early recognition. Newborn screening for CAH in Indonesia is not routinely performed and has not been suggested yet. The purpose of this case report was to report a case of adrenal crisis in a congenital adrenal hyperplasia patient focused on diagnosis and therapy. A female, 10 months old infant, was admitted to the emergency department with a chief complaint of a decrease of consciousness for 3 hours before admission and frequent vomiting since born. On physical examination, there was clitoromegaly. Laboratory showed 17-OH progesterone: 173 ng/dL (7-77 ng/dL) and karyotyping: 46 XX. Management of adrenal crisis is a stress dose of hydrocortisone and rehydration. Education is the key to optimal outcomes and normal growth and development.

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Interventions for the prevention of adrenal crisis in adults with primary adrenal insufficiency: a systematic review

Cited by 5 publications

References 41 publications

Addison’s Disease and Adrenal Crisis: A Phenomenological Study of the Patient Experience

Addison’s Disease and Adrenal Crisis: A Phenomenological Study of the Patient Experience

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

Diagnosis and Management of Adrenal Crisis in 46XX Congenital Adrenal Hyperplasia Infant

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