a behavioral intervention technology to facilitate and innovate supportive cancer care
Previous research has shown that web-based symptom monitoring as well as self-management interventions can be effective to reduce symptom burden and improve health-related quality of life (HRQOL). However, most of the previous studies targeted cancer patients during or shortly after treatment, included most often cancer-generic symptoms but less often tumor-specific symptoms, and most interventions comprised behavioral intervention technologies (BITs) to be part of routine care, as adjunctive or guided BITs.
We developed the fully automated BIT ‘Oncokompas’. Oncokompas supports cancer survivors in self-management, by monitoring symptoms (cancer generic and tumor-specific), providing feedback and information on their scores as well as a personalized overview of supportive care options, with the aim to reduce symptom burden and improve HRQOL. According to participatory design principles, several studies were conducted to investigate the needs of patients and healthcare professionals, and feasibility of Oncokompas.
To ensure 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 included 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. 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 were used to build a new and updated Oncokompas.
A national randomized controlled trial in 14 hospitals including 625 cancer survivors showed that Oncokompas did not significantly improve knowledge, skills and confidence for self-management (possibly because the study population was already performing relatively well), but is effective to reduce symptom burden and improve HRQOL. Some effects were found directly post-intervention, and sustained over time suggesting that providing survivors with tailored information and advice only, may already improve HRQOL instantly. Other effects did not come until follow-up and it may be that survivors need time to follow-up the given advice(s) and use supportive care options. It may also be that survivors returned to Oncokompas during the follow-up period to address new topics they did not address in the first place. Oncokompas is also cost-effective: it is as costly as routine supportive care and possibly slighty less costly.
The reach of eHealth in general among survivors was estimated on 68% and of Oncokompas in particular was estimated on 45% among eligible survivors, and both were associated with socio-demographic, clinical, and personal factors.
Considering all available evidence, fully automated BITs as Oncokompas may facilitate sustainability of long-term cancer survivorship care. Further research is needed to identify which components of fully automated BITs like Oncokompas, are fundamental for improving HRQOL and symptoms, in relation to socio-demographic, clinical, and personal factors, and levels of self-management, HRQOL and symptoms. Further research will provide insight whether Oncokompas is cost-effective compared to usual survivorship care. Also, further qualitative research and process evaluations are needed to guide scaling up BITs like Oncokompas, which remains a challenge.
KWF Kankerbestrijding, Stichting Alpe d’HuZes, Pink Ribbon, ZonMw, Zilveren Kruis Achmea, Nutricia, en Brystol Myers Squibb
Dr Femke Jansen
Drs Karen Holtmaat
Drs Nienke Hooghiemstra
Drs Anja van der Hout
Drs Koen Neijenhuijs
Drs Anouk Schuit
Prof. dr. I.M. Verdonck-de Leeuw
Drs Valesca van Zwieten
For questions, please contact Prof dr IM Verdonck-de Leeuw, via [email protected]
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Document PROMs in Oncokompas. A systematic review of measurement properties.