sara [dot] liedholm [at] med [dot] lu [dot] se (Sara Liedholm)
- published 29 May 2020
The POInT clinic at the Clinical Research Centre (CRC) in Malmö welcomes parents with their young children. One of the research nurses who sees them is Annika Björne Fors, who coordinates all sample-taking and appointments related to the study.
The clinic is located one floor above the main entrance and belongs to both Lund University and Region Skåne, which is the principal of several of the studies conducted here. The TEDDY study has been running for 15 years and the new studies, POInT and PreCiSe, are now in their second year (see fact box). The waiting room is designed as a playroom with toys, games and books. The two examination rooms have imaginative paintings on the walls and colourful mobiles above the chairs used for sample collection.
“We want it to be a place where people feel safe and are well cared for”, says Annika Björne Fors.
Screening for type 1 diabetes
Since the summer of 2018, all prospective parents are offered to screen their newborn children for inherited risk of type 1 diabetes and celiac disease. The parents of children who are at high risk of developing type 1 diabetes are asked if they want their children to participate in POInT, which involves studies of whether oral insulin through food can train the immune system to recognise insulin and thus prevent it from attacking and destroying its own insulin cells. Annika Björne Fors has been involved in the TEDDY study since 2016 and was keen to help launch a brand new study and all that it entails. Many pieces need to fall into place: the staff at the maternity wards and maternity clinics are important stakeholders that need to be on board; consent must be obtained and screening samples taken; new procedures must be drawn up and followed.
It’s very important to be well informed and to have confidence in us – we’re dealing with their most precious possessions.
Giving test results
If a blood sample is analysed and shows that a child has a high hereditary risk of type 1 diabetes, Annika Björne Fors is one of the research nurses who telephones the parents and gives them the test results, and invites them to CRC for a consultation where they receive further information about the study.
“I want them to come here for an in-person meeting, meet the staff and see our premises, because even those who seem worried when they arrive here look relieved by the time they leave. It’s very important to be well informed and to have confidence in us – we’re dealing with their most precious possessions.”
Focusing on the children
To Annika Björne Fors, the children are what is most important. They are the reason she chose both the profession and the workplace. However, it was not until she was forced to switch careers that life led her into the field of nursing, with the goal of becoming a midwife. She began working in health promotion, running her own business as a massage therapist, and exercise and nutrition consultant. Among other things, she was a masseur for elite athletes for several years. Eventually, her hands had taken so much of a beating and were suffering from repetitive strain injury that required her to have surgery and change careers. During her training to become a nurse, she worked as an assistant nurse at the maternity clinic at Skåne University Hospital in Lund.
“My goal was to become a midwife, and that door is still open”, she says.
Rarely an unhappy ending
For eight years she worked as a nurse at a neonatal clinic; a time she describes as amazing and where meeting with parents and their children was a constant source of joy.
“The neonatal clinic receives children with various conditions present from birth or who are born prematurely, but it rarely ends it tears – things almost always work out”, she says.
However, poor working conditions made her fed up and eventually change jobs. The big difference is that she now has plenty of time for each child and feels she has the opportunity to do a good job.
“I have time to see both the children and their parents and can therefore make their experience of being here into something positive. At our clinic, the child is the one who calls all the shots and it’s important to pick up on the child’s signals for when is a good time to take a blood sample, for example, and the best way for me to do it.”
Most children don’t get diabetes, but if they do, we can detect it long before the child shows any symptoms.
Oral insulin through food
In the POInT study, participants are randomly selected into groups, one of which is given a capsule of oral insulin to mix in with their food. The other group is given a capsule with a placebo, also a white powder but without any active substance.
“Some have concerns about giving their children medication and for that reason are hesitant about participating in the study. They might also be worried about what will happen if their child develops diabetes. However, most people end up recognising that participation in the study actually means more peace of mind since children, who we discover are at an increased risk, are monitored during their first five years. Most children don’t get diabetes, but if they do, we can detect it long before the child shows any symptoms.”
Part of something bigger
The POInT study is simultaneously being conducted in Germany, Poland, the UK and Belgium. A couple of times a year, the researchers, nurses and other professionals involved in the studies meet to update and learn from each other in order to ensure that the studies are conducted in the best possible way.
“It’s so cool to feel like I’m part of something bigger, but at the same time having the opportunity to design the Swedish part of the study according to our circumstances here”, says Annika Björne Fors.
In addition to her interactions with the children and the feeling of having the time and opportunity to do a good job, the best thing about the job is the sense of being able to give the participants a positive experience.
“Forging ahead with something so important and good, combined with the opportunity to give and receive so much joy, is fantastic.”
Age: 42 Occupation: Research nurse in the POInT and TEDDY studies Favourite thing about the job: “Giving and receiving joy” Hobbies: All forms of outdoor activities and nature activities with my family
Facts about POInT (Primary Oral Insulin Training):
The purpose of POInT is to make the immune system become used to insulin by giving the child insulin through food. Children who, through screening, have learned that they have a high inherited risk of developing type 1 diabetes may participate from ages four–seven months and until they turn three. During that time, they make regular visits to a research clinic where they submit blood samples, among other things. Half of the children receive oral insulin and the other half a placebo. Currently, there are clinics in Malmö, Helsingborg and Kristianstad. More info on the website: www.gppad.org/sv
Facts about PreCiSe (Prevention Celiac disease in Skåne):
The purpose of PreCiSe is to study whether a gluten-free diet during the first three years of a child’s life reduces the risk of developing celiac disease compared to having a normal diet but with a probiotics supplement or placebo. For more information, visit www.precise.lu.se.