Over the past three years a quality of care standard for adrenal disorders has been developed and was recently listed in the Register of the Dutch National Health Care Institute in September 2018. The standard was initiated by the consortium AdrenalNet and was developed in cooperation with both patients and healthcare professionals.
Quite often, neither healthcare practitioners nor the patients know enough about adrenal gland disorders and their treatment. This can lead to serious health risks. The Quality of Care Standard for Adrenal Disorders is intended to help change this situation. Patients played a leading role in drawing up the document that was eventually published.
The document explains to health practitioners and patients what ‘good care’ for someone with an adrenal disorder means. It also helps patients find the best way to cope with their illness and its consequences.