What works and what doesn't in asthma care? From the chairman of the Asthma and Allergy Association

Can you tell us a little bit about who you are and what you work with? My name is Maritha Sedvallson and I am chairman of the Swedish Asthma and Allergy Association since about 8 years ago. In parallel with my role as chairman, I am also involved locally in asthma and allergy issues and also work as a specialist teacher at an F-6 school in Ovanåker municipality where I live.   Why are you passionate about this? You could say that I was born into allergy problems as I had early extensive food allergies and severe eczema. I followed the allergy journey many people talk about and later developed asthma and rhinitis. Despite this, I felt unprepared for the journey I had to make with my children. They were born in the 80s and cortisone as an inhalation medication had not been introduced yet, which meant that for some years we were hospitalized for severe asthma on average once per month. It was a very stressful and anxious time where zero support functions apart from the purely medical were available. In the mid-nineties, an event occurred that increased my involvement. There was a very tragic event that was the foundation, when a close friend lost his 11-year-old daughter in an allergic reaction due to nuts. The girl was the same age as one of my children, and my family was deeply affected. About a year later, we formed a local asthma and allergy association with the goal of creating a world, and specifically preschool, school and leisure, that was safer for children with asthma and allergies.   What significance does the Asthma and Allergy Association have for patients and therapists? I think the Asthma and Allergy Association and its local associations are precisely the support I lacked in my previous situation. Being able to meet others in the same situation, people who have already undertaken that journey and the experiences I with a new diagnosis will embark on, as well as participate in activities such as trips, courses, lectures organized in a safe and secure environment is very important. It educates, strengthens and equips the person to master everyday life in an optimal way. My experience also says that this is especially important when it comes to children and young people, both to build self-esteem at a time when the norm for how to be is very narrow and for support to develop and become an independent person with a rich life. Unfortunately, I don't really think all therapists understand the importance of patient organizations when it comes to asthma and allergies. It often looks different compared to other diagnoses where you already learn in the hospital or care clinic that the patient association exists as support. We need to be clearer in explaining this to the health services.   What do you and your members think is the most important area of improvement in asthma care today? Statistics from the Norwegian Respiratory Registry show that uncontrolled asthma is very common today in all age groups and is seen especially in adolescents/young adults. This is very worrying and shows that the care, follow-up and patient education that the guidelines for asthma currently point to are not provided. Being offered patient education, which includes knowledge of the patient association, and having a written treatment plan with me from the doctor's visit means that I as a patient have the tools to manage the time until the next visit. Then I have a plan for possible periods of exacerbation, know how to notice an exacerbation and deal with it, and have a contact for questions and concerns. This means that patients with asthma and allergies do not need to burden emergency departments unnecessarily, nor do they need to google and try to assess knowledge on their own. Something that is also absolutely fundamental and that the Asthma and Allergy Association is working hard for today is to get national guidelines for allergy care. It is not sustainable not to have guidelines regarding by far the most common chronic disease in children and adolescents. Nor is it sustainable not to review the provision of specialist expertise before the existing specialists retire. Those who still have their asthma and allergies over the years without receiving optimal treatment will eventually become very expensive patients for the society.   What do you and your members think works well in healthcare today? It largely depends on the level of treatment you are on. People in paediatric specialist healthcare are often satisfied with the holistic care offered. You look at the child's/adolescent's entire life situation, discuss goals with life and with treatment, and get the examinations, treatments and follow-ups needed. In the regions that offer support for allergy consultants, members report that it makes a big difference in everyday life, provides a safer situation at school, fewer incidents and fewer visits to emergency health services.   Are there gender differences in asthma care? Can we say something about why that might be? The statistics from the Norwegian Respiratory Registry show clear gender differences in asthma care, which of course is completely unacceptable. The differences are found within all age groups, but are greatest among young people, where a much higher proportion of girls than boys have uncontrolled asthma. What this may be due to needs to be investigated further. Do we set lower standards for caring for girls than boys, does heatlhcare ask different questions to girls and boys, or is it the case that the norm of being perfect and flawless is more important for girls and that they therefore do not take medication according to plan? Without investigating this, we can only speculate, but the issue is extremely important to address and delve into.   The Asthma and Allergy Association's member survey on future care shows that many have negative experiences in several areas. Is there anything you think the individual therapist can do to improve the patient experience and care during the actual patient visit? Working person-centered is a solution for several parts of this. It means having the patient at the center, talking about how the diagnosis affects them and what the treatment can help with. Asking what goals the patient has with the treatment and share what resources are available to move forward. Patient education and a written personalized treatment plan are two key factors. I also believe that as a healthcare professional it is important to be aware of the scope of my own knowledge, and when I need to make a referral or consult a specialist. Something our members clearly point out that needs to be improved is transitions between the child and adult health services as well as cooperation between the primary and specialist health services. There, structures and working methods must be reviewed. We hope for updates in the primary health service on asthma and allergy, but also clarity about which patients actually need treatment in the specialist health service.