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.)
VUmc en Fonds NutsOhra (2009-2012).
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
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
For questions, please contact
A.C. Moll, PhD MD, projectleader
Phone: + 31 (0)20-4444795