Illness perspectives in patients with primary aldosteronism

Abstract

Objective The burden of symptoms and treatment in patients with primary aldosteronism (PA), as well as the patients’ experience of the health care is sparsely studied. The objectives of this study were to describe symptoms considered to be the most troublesome by patients with PA, and to explore health related worries and expectations following treatment. Methods This was an explorative qualitative study where 25 patients with PA, diagnosed between 2017 and 2019, were included; 13 patients who had undergone adrenalectomy and 12 who were receiving medical treatment. Data was collected during six group interviews and analyzed using a thematic approach. Results Three main themes were identified: 1) Distress of the past, where the most important issues were struggle to receive a correct diagnosis, impaired well-being and the consumption of a large number of tablets, 2) Satisfaction after receiving a correct diagnosis, both in patients with unilateral and bilateral disease, but also dissatisfaction with lack of information about the disease, and 3) Future concerns, where worries about the long-term effects of PA on health in general dominated. Conclusions Our findings illustrate several important issues related to PA where improvements in patient care are needed, including actions aiming at shortening the long diagnostic delay, a thorough information to the patients about the disease is of great importance, and that all patients with PA, regardless of treatment, would benefit from a structured long-term follow-up.

Mortality in Patients With Primary Aldosteronism: A Swedish Nationwide Study

“…29 Unfortunately, undertreatment of patients with PA seems to be common, 14,28,29 where inadequate follow-up, polypharmacy, and side-effects are important contributors. 30 The major strengths of our study are the large and unselected nationwide cohort of both medically and surgically treated patients with PA, and the long followup time. Therefore, the results are representative of unselected patients with PA, not only patients treated at tertiary referral centers.…”

“…29 Unfortunately, undertreatment of patients with PA seems to be common, 14,28,29 where inadequate follow-up, polypharmacy, and side-effects are important contributors. 30…”

Diagnostic Delay and Disease Burden in Primary Aldosteronism: An International Patient Survey

“…Furthermore, we utilized diverse survey dissemination methods and recruited over 600 participants from 6 continents, providing a robust representation of the PA lived experience that supplements a recent qualitative study of 25 respondents. 20 There were <5% missing data across all variables.…”

“…One strategy for improvement is through the understanding of patient experiences, which can provide unique insights into patient outcomes and inform methods to optimize patient care. 18,19 There is, however, limited literature reporting the experience of patients with PA. 20,21 In this study, we aimed to quantitatively evaluate the lived experience of patients with PA through an international survey. The main objective is to determine factors associated with diagnostic delay, PA-related clinical symptoms, disease burden, self-perceived quality of life (QoL), and treatment outcomes.…”