Evaluating the lack of impact of the e-health application Oncokompas on outcomes in incurably ill cancer patients.

The e-health self-management application Oncokompas is a fully automated behavioural intervention technology developed to support cancer patients to adopt an active role to self-manage their symptoms. Oncokompas aims to inform cancer patients on their symptom burden and provides information on supportive care options, thereby activating the patient to take action to deal with the symptoms themselves, which should subsequently result in an improvement of their functioning and wellbeing. A previous study in cancer survivors evaluated the effect of Oncokompas and showed a significant and clinically relevant reduction in several disease-specific symptoms and a small but significant improvement of overall health-related quality of life (HRQoL), while an impact on patient activation (comprising the patients’ amount of knowledge, skills and confidence for self-management) was not achieved. The intervention was most effective in cancer survivors with low to moderate self-efficacy, and among those with high personal control and health literacy scores, and those with a high symptom burden at baseline.

In this issue of The Lancet Regional Health – Europe, Schuit and colleagues conducted a randomised controlled trial in 138 incurably ill cancer patients with a life expectancy of at least three months to determine the efficacy of Oncokompas compared to care as usual on the patient activation, general self-efficacy, and HRQoL. Similar to the trial in cancer survivors, this study failed to show significant differences over time between the intervention and control group for patient activation and general self-efficacy. Moreover, this study also failed to show an impact on HRQoL aspects, including the symptom burden.

The trial contributes to the knowledge on the effects and usage of behavioural intervention technologies in palliative cancer care. The currently available results in both cancer survivors and incurably ill cancer patients suggest that this online self-management tool, on group level, is less valuable as expected. It might be that patients in the control group used other sources of information on the internet, or for example through support groups, which have helped them to deal with their issues. Also, the self-management component of Oncokompas may not be suitable for incurably ill cancer patients. In patients with advanced cancer it has been shown that routine monitoring of patient-reported symptoms using e-health resulted in prolonged overall survival compared to patients receiving usual care., An important aspect in these studies was that patients reporting a severe or worsening symptom over time were immediately referred to a clinical nurse for further action. The potential mechanism of action for prolonged survival was the early responsiveness to patient symptoms, preventing downstream consequences. In light of these findings, it would be worthwhile exploring whether Oncokompas could be extended with active follow-up in incurably ill cancer patients reporting severe or worsening symptoms.

While Oncokompas mainly focuses on improving patient-centred outcomes such as patient activation and HRQoL, aspects such as quality of care and a reduction of the use of medical resources could possibly also be achieved, and therefore worthwhile to explore. For example, a randomized study in metastatic lung cancer patients showed that less aggressive end-of-life care could be achieved with an early palliative care intervention, while the length of survival was not compromised. Particularly in incurably ill cancer patients, the quality of (end-of-life) care is considered important by both patients and their relatives, and good quality of care was found to contribute to a higher quality of dying.

Previously, it has been shown that Oncokompas was most effective in certain subgroups of patients, i.e. those with lower self-efficacy, and higher personal control and health literacy. It could be questioned whether the cognitive status of the patients in the trial also played a role in the lack of efficacy of the intervention. About one third of the patients had a brain tumour and it is known that up to 90% of patients with primary brain tumours or brain metastases from systemic cancer have cognitive deficits already at diagnosis. These cognitive deficits may hamper the patient's understanding of the information provided by Oncokompas as well as their ability to act (independently) upon the identified problems. Indeed, medical decision making capacity is hampered in brain tumour patients, supporting the claim that incurably ill cancer patients need active help in managing their disease.

In conclusion, Schuit and colleagues described an important supportive care trial revealing that the usage of Oncokompas did not impact on outcomes such as patient activation, general self-efficacy and HRQoL in incurably ill cancer patients. Although this well conducted study did not result in improved patient outcomes, further research into the effectiveness of behavioural intervention technologies in palliative cancer care is much appreciated.

Author contribution

Both authors contributed equally.

Declaration of interests

All authors declare no conflict of interests.