The care of patients with these rare adrenal conditions is highly complex, with two things being essential:
– tailored care – each person is different; each body reacts differently to interventions,
– multidisciplinary approach – by definition, several care providers are involved in the treatment and supervision of people.
The desired care for people with adrenal disease is described in the Quality of Care Standard for Adrenal Diseases. The standard includes criteria that the treatment centre must meet in order to be designated as a centre of expertise. Unfortunately, this standard is only available in Dutch.
The Quality of Care Standard for Adrenal Diseases is based on a fruitful collaboration between the care provider and the patient in order to give proper shape to the treatment of the disorder and the follow-up. With proper treatment and guidance, complications and co-morbidity may be delayed. This results in a higher quality of life.
Work together, decide together
A care process in which the patient and the care provider decide together is an important precondition.
Deciding together leads to:
– sensible choices,
– patients are more often satisfied and
– better adherence to treatment prescriptions.
A joint decision also contributes to the efficient use of care. After all, patients can also choose alternative and/or cheaper treatment options and some refrain from diagnostics or treatment altogether (Source: FMS joint decision).
When advising the patient, the care provider can make use of the products, as they are described under the heading ‘self-management’.