This month I had the pleasure of Interviewing Board member and Nurse excellence award winner Eline Visser.
Where do you work?
I work at the Erasmus MC-Sophia Children’s Hospital in Rotterdam, The Netherlands. Next month I am celebrating the fact that I have worked here for 25 years. I have worked as a pediatric nurse, as a NICU and PICU nurse and as a research nurse. Before working in immunology I worked in pediatric oncology and with patients with Cystic Fibrosis.
What is your role?
I am a nurse practitioner, involved in patients with PID. My goal is to help children with PID to cope with their illness. I help families to choose the treatment they prefer and which suits their particular situation and I coach children to become as independent as possible.
Describe an average day
There does not really seem to be an average day. My work load often depends on the amount of phone calls and e-mails I get. All patients have our direct phone number, so during office hours they can get in touch easily. I have my own group of patients, who I see at the outpatient clinic. They come in for their check-ups. I do the physical exam and blood work up. In the Netherlands nurse practitioners are allowed to prescribe medication. I mostly prescribe immunoglobulins, antibiotics and prophylaxis (to be used in case of allergy).
I spend a lot of time on the start-up of IG-treatment on new patients or on patients who like to switch to different medication or infusions. I like to show the patients and families all the options, so they can make a well-informed decision.
What proportion of your patients who are on IRT receive SCIg therapy and please tell us a little about that e.g. push v pump
As the Netherlands is a small country with 8 university hospitals we have no large patient cohorts in our children’s hospitals. We have approximately 60 children who are on immunoglobulin treatment. Only 5 of those receive their infusions at the hospital, all other children have home infusions. Over 80% of our patients are on subcutaneous infusions. Of those, especially the children of 10 years and up often use facilitated SCIG, because they prefer the less frequent injections. We do not have any patients on manual push therapy. In the Netherlands the insurance covers for the usage of the pumps, so there is no financial incentive.
Do you have many patients that go onto transplant?
In Rotterdam we do not have a transplant center for children. They are transplanted in the University Medical Center in Leiden or Utrecht. After their transplant those patients go to the specialised centers for follow up.
Are you involved in or are you undertaking any research? if so please tell us a bit about it
Last year I finished a pilot study on fatigue in children with PID. Although fatigue is common in pediatric patients with PID, data are limited. Research in healthy children and children with other chronic diseases shows how fatigue affects patients’ quality of life. In our pilot study we aimed to gain insight in the prevalence and impact of fatigue in children with PID and to explore the opinion of patients and parents towards what they believe are to be the most effective interventions.
We combined medical chart reviewing with a postal survey, using a tool called the PedsQL-Multidimensional Fatigue Scale. Consistent with recent US-database research, chart reviewing showed fatigue rates of 65%. The postal survey showed that PID patients experience much more fatigue compared to their healthy peers. Our results emphasize the importance of quantifying and assessing the severity of fatigue in children with PID and of addressing this issue in our patient care. This implies we need to use measurement tools in our daily clinical practice. Understanding fatigue in children with PID is a first step towards improving their Quality of Life.
Many patients were very interested in the study results. I would love to extend this pilot study to an international multicenter study. This would give us the opportunity to apply things we learned during this pilot and to test some of our hypotheses. But first of all, I must write a manuscript on the pilot study and try to get it published. It is a huge challenge to find the time and energy to do that.
What do you believe is the biggest challenge facing nurses working within PID today?
Now that we manage to cure more patients from infections, and sometimes even the underlying disease, we are facing the challenge to not only extend their lives, but also to improve the quality of our patient’s lives.
On a social level I believe there are challenges in the issues concerning vaccination. We need to be very consistent and persistent in the information we provide.
And last but not least, there is the issue of social inequality. Until I joined INGID I never realised there is such a big gap in the availability of immunoglobulins in different countries. It was shock to me and something I would like to change if I could.
Why did you join INGID?
I joined INGID because there are not many PID-nurses in our small country. Riet Strik-Albers and Marianne van der Ent, who were both involved writing in the international guidelines, told me about INGID and its importance to team up with as many nurses as possible.
At the 2018 INGID meeting, Lisbon, you received an award for nursing excellence, what does this mean to you?
Receiving the INGID award for nursing excellence means a lot to me, especially because it turned out I had been nominated by my colleague Linda van der Knaap. Linda is a very experienced nurse practitioner who is specialized in children with hiv. She has been a role model to me over the past years. I have always admired the way she combined her great communication skills and her medical knowledge and she inspired me to become a nurse practitioner just like her. Her kind words about my work in immunology nursing and about my personality meant the world to me. Compared to other nurses in INGID I feel I have not accomplished that much yet. The award is a symbol of encouragement. It convinced me that my input in INGID activities would be valuable enough to join the board. It motivates me to help other nurses in immunology.
Any words of advice or tips for other INGID members?
Anyone who works in immunology nursing, no matter where you are from, no matter how much or how little experience you have, you are valuable for our group! Please don’t feel shy, don’t let your non-native English stop you: please share your questions, experiences, remarks and needs with us!
