Nursing research contributes to improving care and care outcomes in children with cancer and their families aiming to optimize their quality of life. This in close collaboration with other disciplines and research groups. Nursing research is patient-oriented, applied, and scientific.
The focus of the nursing research program is to improve children’s physical and emotional comfort and minimize the impact of distressing symptoms.
Children experience many distressing symptoms during cancer treatment such as pain, fatigue, nausea and vomiting, and anxiety. According to parents, these symptoms are not always treated adequately. This may be because of lack of recognition of the symptoms or lack of awareness among health care professionals that these symptoms can be treated adequately. As a result, children suffer unnecessarily and experience a worse quality of life than is desirable. A solution to this problem is to explicitly ask children about their symptoms and to rely on so-called 'patient reported outcomes' (PROs). Systematic symptom assessment allows better patient tailored care using evidence based guidelines. Currently, we investigate the use of PROs in patient care and we focus on improving the care of nausea and oral mucositis.
- Development of a symptom-app.
We aim to develop a symptom-app using patient reported outcomes that identifies symptoms, that are relevant for the patients, and facilitates patient and family centered care based on evidence based guidelines.
For the development of the symptom app, the next steps will be taken:
- Selection of a subset of relevant symptoms;
- Design and development of the symptom app;
- Testing of the usability of the symptom app in practice.
- Nausea: nausea and vomiting are rated as most feared side effects of chemotherapy. The prevalence of chemotherapy induced nausea and vomiting (CINV) is reported in 15-100% of the children and control remains challenging. CINV causes anxiety, and it impairs nutritional status, physical functioning, and treatment adherence. Therefore, better control of CINV is one of the research priorities of the Supportive Care group. Better knowledge of the prevalence of nausea and risk factors can help to improve the treatment and prevention of nausea. Currently, data of the KLIK PROM portal are analyzed to answer these questions and to determine the impact of nausea on quality of life. In addition, we investigate whether a patient-reported outcome measure (PROM) can help in better recognition of nausea or in evaluation of the effectiveness of interventions. Therefore, feasibility, validity and responsiveness of two nausea instruments will be studied. This study is linked to the Davincy study of oncologist E. Vos-Kerkhof.
The nursing nausea studies are conducted by Rosanne Been and Els Haverkate (both nurse and nurse researcher).
- Oral mucositis: Oral mucositis is a frequent side effect of treatment, prevalence rates of 20-80% have been reported. Given the impact of mucositis on morbidity and mortality, adequate mouth care is essential. However, a suvey in 2020 pointed out that in our center mouth care was based on outdated protocols and that parents received incomplete and conflicting information. Therefore, a multidisciplinary group, initiated and led by nurse and nurse researcher I. Bremer-Ophorst, developed a new protocol based on recent evidence, which is implemented in the last quarter of 2022. The effects of the implementation will be evaluated.
Aeltsje Brinksma started her career as pediatric nurse at the Beatrix Children’s Hospital of the University Medical Center Groningen (UMCG). It was here that she first became acquainted with the care for children with cancer. After obtaining her master degree in nursing science, she became coordinator of the nursing research program of the UMCG. She wrote research proposals for grants, was member of several research committees, was lecturer at the master program Nursing Science, supervised master students in their research, and was project leader of several projects among others about the implementation of nutritional screening. In her Phd study she focused on the prevalence, related factors and consequences of malnutrition in children during cancer treatment and graduated in 2014. Following the results of her thesis, she started a Co-design project in cooperation with the University of Applied Sciences in Utrecht to develop tools to improve dietary intake and physical activity in children with cancer. In 2020 she became senior nurse researcher at the Princess Máxima Center and she is responsible for the development of the nursing research program.
Main publications
Brinksma, A., Sulkers, E., Kouwenberg, D., Lelieveld, O.T.H.M., Boot, A.M., Burgerhof, J.G.M., and Tissing, W.J.E. (2022) Changes in body size and body composition in survvors of childhood cancer; seven years follow-up of a prospective cohort. Clin Nutr 41, 2778-2785
Brinksma, A., Sulkers, E., IJpma, I., Burgerhof, J. G. M., and Tissing, W. J. E. (2020) Eating and feeding problems in children with cancer: Prevalence, related factors, and consequences. Clin Nutr 39, 3072-3079
Brinksma, A., Roodbol, P. F., Sulkers, E., Kamps, W. A., de Bont, E. S., Boot, A. M., Burgerhof, J. G., Tamminga, R. Y., and Tissing, W. J. (2015) Changes in nutritional status in childhood cancer patients: a prospective cohort study. Clin Nutr 34, 66-73
Brinksma, A., Sanderman, R., Roodbol, P. F., Sulkers, E., Burgerhof, J. G., de Bont, E. S., and Tissing, W. J. (2015) Malnutrition is associated with worse health-related quality of life in children with cancer. Support Care Cancer 23, 3043-3052
Loeffen, E. A., Brinksma, A., Miedema, K. G., de Bock, G. H., and Tissing, W. J. (2015) Clinical implications of malnutrition in childhood cancer patients--infections and mortality. Support Care Cancer 23, 143-150
Sulkers, E., Tissing, W. J., Brinksma, A., Roodbol, P. F., Kamps, W. A., Stewart, R. E., Sanderman, R., and Fleer, J. (2015) Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis. Psychooncology 24, 318-324
Brinksma, A., Huizinga, G., Sulkers, E., Kamps, W., Roodbol, P., and Tissing, W. (2012) Malnutrition in childhood cancer patients: a review on its prevalence and possible causes. Crit Rev Oncol Hematol 83, 249-275
More publications can be found in Pubmed.