Clinical Research Program – Quality of Life
Improving quality of life during and after treatment
This clinical research program is about improving the quality of life of children diagnosed with cancer, during and after treatment, for the rest of their lifes or by careful end of life support.
Contact
Wouter Kollen
Clinical Director Quality of life, Clinical Research Program – Quality of Life
“We focus on development orientened care, empowerment of families, with a continuous interaction between care and research.”
Dr. Wouter Kollen
Clinical program director Quality of Life
Departmental research and clinical trials program
Psycho-social research - Grootenhuis group
We determine and decrease the medical traumatic stress of treatment and improve the quality of life for pediatric cancer patients, survivors, and their families across the lifespan. We study
the (neuro)psychosocial outcomes and quality of life;
risk and protective factors
the development, feasibility, effectiveness and implementation of psychosocial interventions.
Late effects - Kremer group
We focus on survivorship research, epidemiological trends of childhood cancer, and quality of care improvement. We have expertise in performing large epidemiological studies on cohorts of children with cancer and survivors, performing (eHealth) interventions and implementation studies, and developing systematic reviews, guidelines and outcome indicators. Research is embedded and performed within local, national (LATER study group), and international networks, among which the pan-European PanCare network and the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG).
Neuro-psychology - Partanen group
Our group focuses on the early identification and intervention of neuropsychological impairments in patients and survivors of childhood cancer. These results will ultimately help to prevent further neuropsychological difficulties and improve quality of life in this group of children.
Supportive Care - Tissing group
Our focus is to improve supportive care which is needed to help children and their families to cope with their cancer treatment, to increase quality of life and to prevent treatment related mortality. We aim to develop evidence based practical guidelines regarding supportive care topics to support the decision-making of the healthcare professionals. To achieve this goal, current and future research gaps need to be identified and studies to bridge these knowledge gaps will be performed.
Key publications
- Key publications
1. A joint international consensus statement for measuring quality of survival for patients with childhood cancer. van Kalsbeek RJ, Hudson MM, Mulder RL, Ehrhardt M, Green DM, Mulrooney DA, Hakkert J, den Hartogh J, Nijenhuis A, van Santen HM, Schouten-van Meeteren AYN, van Tinteren H, Verbruggen LC, Conklin HM, Jacola LM, Webster RT, Partanen M, Kollen WJW, Grootenhuis MA, Pieters R, Kremer LCM; International Childhood Cancer Outcome Project participants. Nat Med. 2023 Jun;29(6):1340-1348. doi: 10.1038/s41591-023-02339-y. Epub 2023 Jun 15.
2. van Gorp M, Irestorm E, Twisk JWR, Dors N, Mavinkurve-Groothuis A, Meeteren AYNSV, de Bont J, van den Bergh EMM, van der Meer WVP, Beek LR, Aarsen FK, Streefkerk N, van Litsenburg RRL, Grootenhuis MA. The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study. BMC Cancer. 2023 Sep 11;23(1):855. doi: 10.1186/s12885-023-11379-z.
3. Irestorm E, van Gorp M, Twisk J, Nijhof S, de Bont J, Grootenhuis M, van Litsenburg R. Longitudinal development of fatigue after treatment for childhood cancer: a national cohort study. Acta Oncol 2023 Oct;62(10):1309-1321. doi: 10.1080/0284186X.2023.2254477. Epub 2023 Sep 7
4. Van Schaik J, Schouten-van Meeteren AYN, Vos-Kerkhof E, Janssens GO, Porro GL, Fiocco M, Bakker B, Tissing WJE, Hoving EW, van Santen HM. Treatment and outcome of the Dutch Childhood Craniopharyngioma Cohort study: First results after centralization of care. Neuro Oncol. 2023 Dec 8;25(12):2250-2261. doi: 10.1093/neuonc/noad112.