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Oncokompas: an e-health self management platform to facilitate and innovate supportive cancer care


Due to the aging population and the increasing number of chronically ill patients, the pressure on health care is rising. To maintain a durable health care system, a major change is needed in the organization and structure of the current system.
Cancer is an example of a disease that is developing into a chronic illness. In the Netherlands, it is estimated that approximately 600.000 people are currently living with cancer. Scientific research shows that physical and psychological complaints often occur after treatment for cancer. These symptoms may have a negative influence on the quality of life, become an obstacle when returning to work, and lead to a higher consumption of care. To detect these symptoms, adequate supportive care is necessary. Due to the rising number of cancer patients and the prolonged survival rates, the demand for supportive care is expected to increase. However, health care providers often lack the necessary means to provide structured supportive care. Besides, the health care professionals involved in cancer treatment often only have a subset of information about the patient, and do not communicate with each other about the patient’s psychosocial well-being.
E-health applications such as the Oncokompas may be used to enhance the efficiency of supportive care. By means of Oncokompas patients can independently fill in questionnaires on quality of life (physical, psychological, social, and emotional domains) and lifestyle. Data are processed in real-time. Patients can view the results by means of a well-being profile. Supported by an evidence based knowledge and decision support algorithm, advices are generated automatically concerning supportive care and lifestyle. Based on the individual well-being profiles and patients’ preferences, participants can be directed towards guided self-help treatments or professional care providers.
By means of Oncokompas, insight into the needs of patients for supportive cancer care, minimal intervention strategies, self-help programs, and supportive care providers will be acquired. Also, more insight will be obtained into the possible determinants of supportive cancer care and the success of an intervention, such as socio-demographic variables, clinical parameters, co morbidity and coping strategies.

To develop Oncokompas, a personal e-health portal that supports cancer survivors by finding and obtaining optimal supportive care, adjusted to their personal health status and situation.

VU University and VU University Medical Center (VUmc) develop Oncokompas. Oncokompas is based on the guidelines “detecting the need for psychosocial care’ and ‘cancer rehabilitation’. The quality of life and lifestyle domains that will be incorporated in the OncoCompass will be reviewed by a multidisciplinary oncology team of health care professionals, and experts in supportive cancer care.
To ensure the optimal customization of Oncokompas to the preferences and needs of the end-user (cancer patient) and other stakeholders (e.g. care providers), the application is developed through a development cycle. This cycle consists of three phases: designing the actual program, testing its usability, and an outcome– and effect evaluation. We expect that developing Oncokompas through this development cycle will have a positive influence on the frequency of use, the understandability of Oncokompas, and the probability that users will actually comply with the recommendations they receive.
The first step of the development cycle includes a needs assessment with both patients and health care providers. This needs assessment has been carried out and consisted of interviews with patients and health care providers to identify their needs (preferences and demands) towards e-health applications in general, and Oncokompas in particular, within the supportive care phase. Also, a quantitative needs assessment was conducted in collaboration with MotivAction. This quantitative assessment was directed towards gaining insight into the wishes and demands of cancer patients and the general Dutch population regarding prevention, stepped care and e-health, in relation to quality of life and different lifestyles. The following step in the Oncokompas development cycle involved usability testing. The usability of Oncokompas was tested with potential users, using Morae software, and test-scenario’s. .
After developing the Oncokompas, the feasibility of this prototype was tested in a nation-wide study. This feasibility study was conducted with a selected group of head and neck cancer patients in 3 University Medical Centers in Amsterdam (VUmc), Leiden (LUMC), and Maastricht (MUMC) (in collaboration with the Dutch Workgroup Head and Neck Tumors (in Dutch: NWHHT)). The results are used to build a new and updated Oncokompas.  The new and updated Oncokompas will become available in the course of 2015. 

KWF Kankerbestrijding / Alpe d'HuZes, Stichting Achmea Gezondheidszorg, Pink Ribbon, Danone Ecofund, Nutricia

PhD student
S. Lubberding, MSc, Psychologist-researcher, dpt. of Otolaryngology-Head & Neck Surgery, VUmc
Project leader
Prof I.M. Verdonck-de Leeuw, PhD, Psychologist, Speech & Language Therapist, Linguïst, dpt. of Otolaryngology-Head & Neck Surgery, VUmc and dpt. of Clinical Psychology, VU Faculty of Psychology and Education

For questions, please contact:
Prof. I.M. Verdonck-de Leeuw, projectleader Oncokompas



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News flashes


PhD thesis Mirjam de Vries

March 22, 2019 Mirjam de Vries defended her thesis “Physicians‘ defence mechanisms during communication with advanced cancer patients”. 


PhD thesis Joeri Kalter

September 28, 2018 Joeri Kalter defended his thesis “Exercise and psychosocial interventions to improve quality of life in patients with cancer”. 


PhD thesis Sanne Duman-Lubberding

July 4, 2018 Sanne Duman-Lubberding defended her thesis "Online Patient Reported Outcome Measures to faciltate supportive care in Head and Neck Cancer patients".


PhD thesis Femke Jansen

January 15, 2018  Femke Jansen defended her thesis “Supportive care in head and neck cancer patients. Patient-reported needs and costs”. 

PhD thesis Janneke Rood

September 11, 2017 Janneke Rood defended her thesis "Perceived need for information and treatment decision-making in patients with hematological malignancies: not "one size fits all".


Amsterdam Public Health project

Within the context of the alliance VUmc-AMC Prof dr Ellen Laan (AMC) and prof dr Irma Verdonck-de Leeuw (VUmc) received a grant for the project "Sexual well-being in head and neck cancer patients".


Treatment of psychological distress in patients with head and neck or lung cancer cost-effective.
A recent study of PhD-student Femke Jansen and colleagues, recently published in the Journal of Clinical Oncology


PhD thesis Nadine Köhle

December 15, 2016 Nadine Köhle defended her PhD thesis "Hold on, for each other. Supporting partners of cancer patients via eHealth and positive psychology". 


PhD thesis Anne-Marie Krebber

December 2, 2016 Anne-Marie Krebber defended her PhD thesis "Stepped care targeting psychological distress in head and neck cancer and lung cancer patients".


PhD thesis Nadia van der Spek

September 7, 2016, Nadia van der Spek defended her PhD thesis "Meaning-centered group psychotherapy for cancer survivors: development, efficacy, and cost-utility". 


EORTC QLG Newsletter Spring 2016
The EORTC QLG  Spring Meeting took place on April 20th and 21th 2016 in Oslo. The Spring newsletter of the EORTC QLG is now available. 

PhD thesis Ingrid Cnossen

April 12, 2016, Ingrid Cnossen defended her PhD thesis entiteld “Self-management Supporting Rehabilitation in Head and Neck Cancer Patients”. 


VU/VUmc and Red-kite sign agreement for the provision of the Oncokompas in healthcare.

The VU University Amsterdam and VUmc Cancer Center Amsterdam work with Red-kite, distributor of software for hospitals in Netherlands. (November 3, 2015)


PhD thesis Christine van Gogh

December 4, 2015, Christine van Gogh defended her PhD thesis entiteld “Functional outcome of early glottic cancer”. 

Book presentation

On June 15th, 2015, Irma Verdonck presented the book "In Tune Without Cords" (in Dutch: VerderZonderStembanden) to Rob Burdorf, the president of the patient society for patients after laryngectomy.


PhD thesis Florien Boele

May 11 Florien Boele defended her PhD thesis, entitled "Towards improving health-related quality of life in glioma patients and their informal caregvers".


PhD thesis Trille Kristina Kjaer

May 8, Trille Kjaer will defend her PhD thesis entitled "Late effects after treatment of head and neck cancer and use of patient reported outcomes in clinical practice." Irma Verdonck is member of the committee.


Niels Stensen Fellowship
Florien Boele has received a Niels Stensen Fellowship. This is a scholarship that is awarded annually to a number of outstanding researchers who have recently obtained their PhD degree, to gain working experience abroad. Florien Boele will go to Pittsburgh (United States) and Edinburgh (Scotland) in 2015 and 2016.

Key paper

The publication “Prevalence of depression in cancer patients: a meta-analysis of diagnostic interviews and self-report instruments” of A.M.H. Krebber et.al is chosen by the Editors as one of the key papers in Psycho-oncology, (issue June 2014).


On April 10th, 2014, the first edition of the Value Based Healthcare Prize took place. The prize for the most exceptional initiative in collaborations went to Jippa, a collaborative by VUmc, CZ, Radboud UMC and Tilburg University.


In November 2013 the NVPO organised the International Congress "Innovation in Psycho-Oncology". The researchgroup held several presentations and posters.


Interested in oncological care chain? Come 2 October 2013 to the 3rd MuON symposium in hospital Gelderse Vallei. Keynote speaker Michel van Schaik (Director Rabobank) about Innovation in the care!


12 april 2013: KWF Kankerbestrijding / Alpe d’HuZes has granted the research proposal Netherlands Quality of life and Biomedical Cohort Studies in Cancer (NET-QUBIC).

Marieke de Bruijn will defend her PhD thesis on 10 juni 2013 at 15.45 pm.

Support our bicycle team for Alpe d'HuZes 2013!

On 6 June 2013 our team living together with cancer will cycle the Alpe d'HuZes! This in the fight against cancer. At this moment there is already more than 1500 euro donated. Do you support us too?


The 15th World Congress of Psycho-Oncology and Psychosocial Academy will be held in Rotterdam, 4-8 November 2013. www.ipos-society.org/ipos2013/.


29 January 2013. Pink Ribbon has granted a project to develop and evaluate an online training for cancer patients with insomnia (Annemieke van Straten), and a project to develop and evaluate a breast cancer module for the OncoKompas (Nelly van Uden).


Charity Symposium "Living with cancer"

On December 19, 2012 there will be a Symposium ''Living with Cancer''. This is a charity symposium on meaning centered psychotherapy for cancer patients. Read more about it at the tab News at the left.


15 November 2012: Hoe?Zo! Radio interview with Irma Verdonck on stress and cancer.


October 2012: Interview with Irma Verdonck in Psychologie Magazine.


September 9, 2012. Interview Hans van Willigenburg with Irma Verdonck on Radio 5.


August 2012. Five students finish their MSc thesis and graduate as MSc in Clinical PSychology.


June 28-30, 2012: International symposium on Supportive Care in Cancer (MASCC ISOO) at New York. Kevin Yap and Irma Verdonck organise a workshop on e-health and supportive care.


Record for Alpe d'HuZes 2012. The sponsor action Alpe d'HuZes (6 and 7 June) 2012 has already yielded the record amount of 28.5 million euros.


June 6-8, 2012: Our research group contributes to Alpe d'HuZes as volunteers.


April 20, 2012: Nelly van Uden will give a presentation about OncoKompas at a conference about  ICT in health care in Barcelona.


March 16, 2012: NVPO congress in Utrecht, we contribute with 2 oral and 2 poster presentations and a workshop.


January 1, 2012: The project POLARIS project has officially started.


December 22, 2011: Radio program DeGids.fm, Felix Meurders interviews Corien Eeltink on sexuality and cancer. 


November 2, 2011: KWF / Alpe d'HuZes funds a grant for the development and evaluation of an online intervention for informal caregivers of cancer patients.


October 30, 2011 In the national television program "Gesprek op 2", Daphne Bunskoek interviewed Irma Verdonck on living with cancer.


October 28, 2011: www.oncokompas.nl is online!


October 23, 2011: Alpe d'HuZes hands over more than 20 million euros to the Dutch Cancer Society!



Team work

Our research projects are embedded in the two largest research institutes of VU University in Amsterdam: VUmc CCA-VICI (Cancer Center Amsterdam) www.vumc.nl/afdelingen/CCA-V-ICI/ and EMGO+ (Institute for Health and Care Research emgo.nl

We work closely with patients and their caregivers and with researchers and physicians at VU University and VU University Medical Center in Amsterdam and other research institutes and hospitals in the Netherlands and worldwide. Team work is crucial  improving research and translating results into clinical practice.

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