RetinoQuest
An e-health application to facilitate and innovate supportive care in retinoblastoma patients
There is growing interest in using patient-reported outcomes (PRO’s) to screen for physical and psychosocial problems and the need for supportive care in routine clinical practice. Several studies have shown that using PRO’s in clinical practice facilitates communication about quality of life between doctors and patients.
At the department of Ophthalmology of VU University Medical Center (VUmc), efficient structured monitoring of quality of life has become available in 2010 by a newly developed computer-based data collection system ‘RetinoQuest’ (figure 1) that is now implemented in routine clinical practice. Patients can independently fill in quality of life questionnaires (SDQ, GHQ28) and specific retinoblastoma questions via a computer. It takes on average 5 to 10 minutes to complete the questionnaires. RetinoQuest is linked to the hospital patient information system. Data are processed in real-time and care providers can view the results by clear graphics (the well-being profile) on a computer in their consulting rooms. The ophthalmologist discusses the results with the patient and, if indicated, they are immediately referred to our psychologist, a member of the retinoblastoma team, to set up an individualized supportive care plan.
Figure 1. RetinoQuest: Example of the user interface, and graphic representation of a part of the prospective results of a patient. (Click on the screenshots to enlarge.)
Funding
VUmc en Fonds NutsOhra (2009-2012).
Staff
Project leaders
A.C. Moll, PhD MD, Ophthalmologist, Retinoblastoma specialist, dpt of Ophthalmology, VUmc
Prof. I.M. Verdonck-de Leeuw, PhD, Psychologist, Speech and Language Therapist, Linguist, dpt of Otolayngology-Head & Neck Surgery, VUmc and dpt of Clinical Psychology, VU Faculty of Psychology and Education
Project members
A.G. La Rivière, PhD, project coordinator, dpt of Ophthalmology, VUmc
J. van Dijk, PhD, Psychologist, dpt Medical Psychology, VUmc
A. Houffelaar, BSc, Information analist, dpt of Otolaryngology-Head & Neck Surgery, VUmc
M. I. Bosscha, MD, Ophthalmologist, Retinoblastoma specialist, dpt of Ophthalmology, VUmc
W.A. Kors, MD, Pediatric Oncologist, dpt Pediatric Oncology, VUmc
E. van Dulmen-den Broeder, PhD, coördinator/researcher PLEK, VUmc
M.A. Grootenhuis, PhD, Psychologist, Psychosocial Department, Pediatrics, AMC
Questions?
For questions, please contact
A.C. Moll, PhD MD, projectleader
E-mail: a.moll@vumc.nl
Phone: + 31 (0)20-4444795
News flashes
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.
