The role of Positive Health in the Dutch approach to aHUS

A new definition of Health:

“Health as the ability to adapt and self-manage, in light of the physical, emotional and social challenges of life”.

This new definition of health, developed and tested by Louis Bolk Institute researchers Machteld Huber and Marja van Vliet, marks a significant departure from the World Health Organisation’s definition of health. The latter defines health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’.
The way in which ‘health’ is defined has a significant influence on how we organize and use health care. The requirement of ‘complete well-being’ in the WHO definition has unintentionally contributed to medicalisation: 95% of the present healthcare budget is spent on medication and intervention. Due to this focus, patients and healthcare providers often overlook other options for leading a high-quality, meaningful life with an illness.

Concept of positive health embraced by health care sector

The term “positive health” is derived from the new health concept. It stands for a broad view on health, in which health is no longer considered as a static condition but rather as the dynamic ability to adapt and to manage one’s own well-being. Research by Huber and Van Vliet has shown that patients consider these abilities very relevant. By shifting the emphasis to resilience and well-being (rather than ill-health), the new health concept helps policy makers and politicians to change their thinking about health care and disease prevention. This change is urgently needed if we are to maintain high quality care that is also affordable.

Huber and Van Vliet recently published an article *on Positive Health in the international scientific journal British Medical Journal Open (2016). In addition to medical conditions such as physical ailments and disabilities, the concept of Positive Health also covers dimensions such as social participation, quality of life and daily functioning. Hence it considers not only medical treatment but also options for making better use of patients’ abilities to cope, adapt and self-manage. 

* Huber M, van Vliet M, Giezenberg M, et al. Towards a ‘patient-centred’ operationalisation of the new dynamic concept of health: a mixed methods study. BMJ Open 2016;5:e010091. doi:10.1136/bmjopen-2015- 01009

 

The positive elements we see in the new health concept are:

It emphasises that a person is more than his/her illness and still has a large potential for being healthy

The focus is on a person’s strengths rather than his/her weaknesses

It refers to self-management

It refers to individual responsibility

Health is described as being dynamic rather than a static state

It can make the relationship between patient and healthcare provider more balanced

The Positive Health Spiderweb is the tool we use:

The concept of ‘Positive Health’

The six main dimensions of positive health are:

Bodily functions
Mental functions & perception
Spiritual-existential dimension
Quality of Life
Social and societal participation
Daily functioning

Scores run from zero to 10. People score their own perspective on their personal Spiderweb.

Important to know is that there is NO external norm! It is just a personal evaluation of the situation. A ‘health surface’ becomes visible.

The  most important question is : What would I like to change? Am I satisfied with my scores? For example: someone can score a 4 on Social and societal participation, but be very satisfied with that, where he is not satisfied with his score of 8 on Mental functions & perception.

Positive Health is about 3 elements:

1. The broad reflection on your life – ‘My spiderweb’

2. The ‘different conversation’ – What really matters to you?

3. The availability of applicable and practical ‘Actions’ in a broad sense, which the person chooses him/herself.

The Spiderweb tool can also be used in therelation between patient and health care professionals. They can talk about the outcomes of the personal spiderweb and then support the patient to take actions which could improve the dimension he or she wants to focus on.  

It is that personalized approach we think is crucial.

This approach has a link with the CUREiHUSstudy.

The acronym CUREiHUS derives from the words “Curious” and “Cure” in HUS.

One of the objects of this study is to focus on strategies to personalize treatment in aHuspatients. After the introduction of eculizumab in 2011 a worldwide debat arose regarding the optimal treatment dose and duration. Initial guidelines suggested lifelong treatment with a fixed dose for all patients. However , there is no evidence to support this strategy , raising the question if one could taper or even discontinue eculizumab therapy in aHUS patients.

The ultimate goal is achieving tools for tailored patient care and hereby personalize treatment in patients with aHUS.

Personalized treatment instead of the “one size fits all “ approach.

While we think this is a great development, we also realised that, while discussions about the right treatment continues, there is a lot of insecurity among patients and their caregivers.

Selfmanagement study aHUS

That’s why Dr Nicole van de Kar (pediatric nephrologist, Radboud University, NL) as principal clinician, together with the Dutch Kidney Patients Association decided to start a study to find out in which way we can further support patients and their caregivers.

Following the theory of Positive health we didn’t make the mistake to tell them what they should do to diminish their insecurity.We decided to approach three professional well-trained interviewers and asked them tointerview a group of about 100 patients, partners and caregivers individually.

With the spiderweb tool as a basis they will ask them: What is important in your life and can you think of something which could help you to live with less anxiety ?

The interviews will take place in the second half of 2019 and after analyzing the conversations, we will try to come up with practical solutions and implement them in the care for people living with aHUS.

Article written by : Marjolein Storm ( team coördinator at the Dutch Kidney PatientsAssociation and Wim Altena ( aHUS patient ). We used information from the website from Louis Bolk institute and from the thesis “A new era in Hemolytic Uremic Syndrome” by Kioa Wijnsma.