In the shadow of Graves' disease: a qualitative interview study of patients' experiences conducted at a secondary referral centre in Sweden

Graves' disease (GD) is the most common form of hyperthyroidism in Sweden with an incidence of 21/100 000 individuals, the majority of whom are women of working age. GD can be overwhelming for the affected patient. A way to improve health outcomes is to better understand patients' experiences of their illness. We therefore aimed to explore patients' experiences of GD during the initial phase of the disease.

A qualitative study based on semistructured interviews was conducted and analysed using qualitative content analysis, following Graneheim and Lundman's description of the method.

The study was carried out within specialised care at the secondary level in a Swedish healthcare context.

15 patients (12 women and 3 men; aged 29-74 years) within the first 3 months after GD diagnosis were included in the study.

Being affected by GD means facing a range of new and often incomprehensible symptoms contributing to an experience of change in one's personality. In contact with healthcare, they experienced challenges such as an overwhelming amount of information, a lack of energy, and feelings of being a burden. These factors were described as having a negative impact on daily life, well-being, and psychological and psychosocial functioning. The participants highlighted the need to be listened to, to receive tailored information, to have continuous contact, and to have fatigue and other symptoms more thoroughly addressed.

The findings indicate that symptoms have a significant impact on patients with GD, influencing their care experience, information processing, decision-making abilities, and daily functioning. The application of person-centred care can be one way to support patients with GD, as it facilitates a collaborative approach and enhances the comprehension of each patient's needs and resources. By acknowledging the patient's experiences, situation, and expectations, as well as the comprehensive impact of the disease, and by modifying support strategies, patient well-being and health outcomes may be significantly improved.