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Illness perspectives in patients with primary aldosteronism
Oskar Ragnarsson1,2, Andreas Muth3,4, Gudmundur Johannsson1,2
1Department of Endocrinology, Sahlgrenska University Hospital, Gothenburg, Sweden.
Plos One
|November 28, 2022
Summary
Patients with primary aldosteronism (PA) struggle with diagnosis delays and information gaps. Improved care requires shorter diagnostic timelines, better patient education, and structured long-term follow-up for all PA patients.
Area of Science:
- Endocrinology
- Patient Experience Research
- Qualitative Health Research
Background:
- The patient experience and symptom burden in primary aldosteronism (PA) are understudied.
- Understanding patient-reported outcomes is crucial for improving care in PA.
Purpose of the Study:
- To identify the most troublesome symptoms experienced by patients with PA.
- To explore patients' health-related worries and expectations post-treatment for PA.
Main Methods:
- An explorative qualitative study involving 25 patients diagnosed with PA between 2017-2019.
- Data collection through six group interviews, followed by thematic analysis.
- Included patients who underwent adrenalectomy (n=13) and those on medical treatment (n=12).
Main Results:
- Key themes included diagnostic delays, impaired well-being, and high pill burden.
- Patients reported satisfaction with diagnosis but dissatisfaction with information.
- Future concerns focused on the long-term health effects of PA.
Conclusions:
- Improvements are needed in shortening diagnostic delays for PA.
- Comprehensive patient information regarding PA is essential.
- All PA patients, irrespective of treatment, benefit from structured long-term follow-up.
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