Interview by Dr. Marten Dooper

Last year, BijnierNET (AdrenalNET) published the draft version of a national consensus for administering extra hydrocortisone as a way of preventing an Addison crisis in patients with adrenal insufficiency. This ‘stress instruction’ forms part of the Quality of Care Standard for adrenal gland disorders, the first draft of which is expected to be ready towards the end of 2016. After a national round of consultations, the Quality of Care Standard will be submitted to the Association for Internal Medicine (NIV) and the Dutch Endocrine Society (NVE) for accreditation early in 2017.

At the official founding in December 2014, BijnierNET indicated that one of its primary aims was the development of national standards of care for adrenal gland disorders. Good progress is being made towards achieving that goal, according to Ad Hermus, Professor of Endocrinology at Radboudumc and chairman of BijnierNET. “The modules for the individual disorders of the Quality of Care Standard for adrenal gland disorders are ready. Now we are working on finalizing the generic modules. These modules describe the quality of care criteria for items such as diagnostics, organisation of care, improvement of knowledge and expertise for both patients and healthcare practitioners, and employment and social participation. We hope to have achieved consensus on these modules by the end of this year.” ‘We’ in this instance are the 15 members of the focus and feedback group consisting of endocrinologists, nurses and patients. Hermus: “As soon as we have finished all modules, we will organize a meeting at which all those concerned – healthcare practitioners, patients and their relatives – can discuss and comment on the Quality of Care Standard. Afterwards, we will formulate a final draft of the Quality of Care Standard which will be submitted to the NIV and NVE for accreditation. If they acknowledge the Standard, we can offer it to the Dutch National Health Care Institute to be incorporated into the National Quality Register.”
“After that it will be exciting to see how the various parties involved will employ the Quality of Care Standard”, adds Johan Beun. Beun is an adrenal gland patient himself and coordinator of BijnierNET. “Personally, I believe we have set the bar fairly high with this Quality of Care Standard. The question will be how we will deal with it. Will the endocrinologists see the Standard as a professional challenge? Will it be of practical use to the patients? It is important for us -and by that I mean both healthcare practitioners and patients- to speak with one voice with respect to the Quality of Care Standard. In addition it is important to make sure the message is heard and put into practice. The implementation of this first module, the stress instruction, will shed some light on this.”

Confusion

The fact that the stress instruction for glucocorticoid suppletion is the first component of the Quality of Care Standard to be completed should not be a surprise. Back in 2013 it was already known from research carried out by nursing specialist Nick van der Meij and endocrinologist Dr Pierre Zelissen (both of the University Medical Center in Utrecht) that the instructions given to patients with adrenal insufficiency on how to adjust the hydrocortisone dose in the event of a stress situation to prevent an Addison crisis differ between hospitals and even within hospitals. They also found different protocols for adjusting the hydrocortisone dose when a patient is admitted to hospital, for an operation for example. “It is not really so surprising that these instructions are not the same everywhere”, says Hermus. “The scientific literature about the optimum adjustment of the glucocorticoid dose in the case of stress or hospitalization is very limited. Many recommendations on this topic are based on the healthcare practitioner’s own expertise and opinion. Consequently, one practitioner might recommend doubling the dose in the case of illness or stress, while another recommends trebling the dose.” “And that is confusing, at the very least. Especially if you are being treated by various healthcare practitioners and keep getting different advices”, adds Beun from personal experience.

Shortly after its establishment, and prompted by the Utrecht research findings, BijnierNET instituted a task force to formulate a national guideline on stress instruction. The task force included both healthcare practitioners and patients. Hermus: “We discussed and reviewed the differences between the various recommendations. After a couple of rounds, we agreed on a set of recommendations to adjust the glucocorticoid dose in case of stress at home or in the hospital. As far as possible, these uniform recommendations are based on scientific literature, but they are primarily inspired by the feedback from patients. With their long experience, patients are well equipped to indicate the feasibility of the recommendations. As we do not expect the accreditation process to result in any major changes to the recommendations, and as both patients and healthcare professionals have been calling for it, we already published a brochure for patients explaining the stress instruction last spring. Up to now there has been nothing but positive feedback on that brochure from both patients and healthcare practitioners. Everyone agrees that this single uniform national protocol on how to act in the event of stress is a big step in the right direction.”

Emergencies

“Now it is important to implement the stress instruction properly,” says Beun. “This means all healthcare practitioners involved with people with adrenal insufficiency must be made aware of the new, uniform instructions. In addition, they have to discuss the new instructions with their patients.” Besides disseminating the instruction via the website www.bijniernet.nl, BijnierNET is also planning to set up a national education programme. Hermus: “That programme will consist of two elements: a three-part e-learning course and a day-long ‘live’ course. The programme is mainly aimed at nursing staff because – in daily practice – they have the most important role in the education of patients. The intention of this education programme is to ensure that in every hospital in the Netherlands where patients with an adrenal gland disease are treated, at least one nurse knows how to prevent an Addison crisis by increasing the dose of hydrocortisone or by administering an emergency injection. The availability of this knowledge is an important quality criterion. The Quality of Care Standard therefore advises hospitals not to treat adrenal gland patients unless the knowledge about preventing an Addison crisis is at their disposal 24/7.” “It is also important that this knowledge is available in the Emergency Department”, adds Beun. “In most cases when a person is taken to the Emergency Department because of an impending Addison crisis, he or she is no longer capable of explaining what is wrong. If the patient is not recognized as such, he or she will not be seen as someone who needs very urgent treatment Patients who are obviously bleeding, for example, will always be given priority in the ER, whereas the adrenal gland patient simply needs to be given an injection of hydrocortisone and put in bed for an hour. Fortunately we have been invited to give a presentation to the professional association of Emergency Department physicians in December. The introduction of the European Emergency Card will also help both patients and doctors take the right decision at the right time.”

App

Beun emphasized that BijnierNET is not trying to shift all of the responsibility onto the shoulders of the professional healthcare practitioners. “Our aim has always been to allow the patient as much control over his treatment as possible. To do that it is essential that the patient has good knowledge of whatever ails him and knows how to cope with his illness. And also, how the patient can involve those around him in his care. Because when an Addison crisis threatens, people with adrenal insufficiency often find themselves no longer capable of taking the right decisions. So it is essential that those around you know what is happening and how they should act. For that reason, we have developed a range of infographics and animated clips – in various languages and suitable for various age groups – which explain the different adrenal gland disorders and how to cope with them. There is even an animated clip about administering an emergency injection. BijnierNET is now working on incorporating all that information, including the animated clips, into an app for smart phone or tablet. That will allow patients to explain to other people what having an adrenal gland disorder entails. And, if necessary, the patient can use the app to show a complete stranger – even one who speaks a different language and in the street if necessary – how an emergency injection should be administered.” “We are now working on a link between this app and the relevant medical records for that patient”, adds Hermus. “We are in discussions with the two principal providers of hospital information systems. They are going to make it technically possible for the relevant medical information about a patient, from GP and pharmacy, to be viewed via a connection to the national healthcare data switch- point. That will mean that, no matter which hospital he is taken to, the patient can give permission for his medical data to be accessed and he can receive the correct treatment. Beun: “We hope that that link will be available early in 2017.”

The article is a translation of an interview by Dr. Marten Dooper that was published in the Dutch journal ‘Endocrinologie’, volume 9, no. 4, Dec.2016, pp. 15-17.

‘Endocrinologie’ is published by BPM Medica for the Dutch Endocrine Society (NVE). The article has been posted with the consent of the publisher. Website: www.endocrinologie.nl