Efficacy and cost-utility of the eHealth application ‘Oncokompas’, supporting patients with incurable cancer in finding optimal palliative care, tailored to their quality of life and personal preferences: a study protocol of a randomized controlled trial

Quality of life is an important aspect of healthcare for patients with incurable cancer. These patients have to deal with physical symptoms due to their disease and treatment, and often suffer from psychological, social and existential concerns, negatively affecting their quality of life [1‐3]. Palliative care (or supportive care) for patients with incurable cancer focuses on reducing symptoms, improving quality of life and supporting patients and their families [4]. It not only concerns the management of physical symptoms related to the disease and its treatment. It also involves the provision of services to meet emotional, social, psychological, spiritual, informational, and practical needs [5‐7]. Although there is evidence that early palliative care improves patients’ quality of life [8], palliative care services are often discussed at a late stage of the advanced cancer trajectory and many patients have unmet needs [9, 10].

Nowadays, patients are expected to adopt an active role in the management of their own well-being and healthcare [9, 10]. Self-management is defined as “those tasks that individuals undertake to deal with the medical, role, and emotional management of their health condition(s)” [11]. Research has shown that interventions supporting self-management can improve quality of life of patients with chronic disease and can be cost-effective [13‐15]. They can also be beneficial for patients in terms of self-efficacy and patient activation [11, 16]. Evidence suggests that cancer patients with high self-efficacy are less likely to have negative psychological outcomes [17].

Patient activation can be described as a patient’s knowledge, skills and confidence to manage his or her own health and healthcare [18]. Research indicated that changes in activation are followed by changes in self-management behaviors [16] and that more activated patients are less likely to have unmet needs [19]. A study among patients with diabetes reported the positive relation between patient activation and self-reported health status across several studies [20]. Furthermore, a higher level of patient activation is associated with lower total costs from a healthcare and societal perspective [21]. Patient outcomes may be influenced by patients’ confidence to manage their disease and thereby lead to lower healthcare costs [22].

Self-management can be stimulated through the use of eHealth. A systematic review showed evidence for positive effects of eHealth on cancer patients’ knowledge levels and information competence, and possibly also on health status and quality of life [12]. Furthermore, eHealth has the potential to be cost-saving [23]. To the authors’ knowledge there is no clear evidence on the efficacy of tailored eHealth interventions supporting self-management in palliative care.

To support cancer patients in managing their well-being by informing them where they can find advice and guidance, the eHealth self-management application Oncokompas has been developed. This application helps patients to monitor their quality of life, using Patient-Reported Outcome Measures (PROMs), followed by automatically generated feedback and advice on palliative care services, tailored to their health status and personal preferences. The aim of the current study is to determine the efficacy and cost-utility of Oncokompas as a self-management instrument on patient activation, general self-efficacy, and quality of life among patients with incurable cancer (who are not yet in the terminal phase of their illness) compared to care as usual.

This study among patients with incurable cancer will assess the efficacy of the eHealth self-management application Oncokompas on patient activation, general self-efficacy and health-related quality of life, and its cost-utility from a healthcare and societal perspective, compared to care as usual.

Patients with incurable cancer often have unmet needs and prefer to stay in charge of their own life as long as possible. Therefore, it is important that these patients know where to go for advice and guidance. Oncokompas is developed to support patients to adopt an active role in managing their own health and healthcare. By improving patient activation and self-efficacy, Oncokompas could be a solution to meet patients’ palliative care needs. It provides information and advice to empower patients to take better care of themselves and, when necessary, information on where they can find professional help. By improving the provision of support or facilitating patients to find support, eHealth reduces patients’ needs for support [12, 44]. Due to increasing healthcare costs, an essential advantage of eHealth is its cost-saving potential [23]. Oncokompas is based on the stepped care principle, meaning that the application supports patients to undertake actions to control their symptoms, only with professional care if needed. Therefore, it is hypothesized that Oncokompas will improve QALYs at acceptable costs compared to care as usual.

Oncokompas could stimulate patients to discuss symptoms or questions with their healthcare professional that otherwise would remain unmentioned. Previous studies showed that for instance sexuality issues or concerns about the end-of-life are difficult to address for both patients and their healthcare professionals [45‐48]. In addition, consultation time is often short, which hampers addressing all relevant issues that a patient might want to discuss [26]. Oncokompas could also help patients to discuss their symptoms with their healthcare professional in a more structured way (e.g. because they might be more aware of their symptoms and also have the possibility to print their results and take this print to their healthcare professional). Another advantage for patients is that they can use Oncokompas at their own home in their own time.

Since Oncokompas includes topics about decisions at the end-of-life, the application could stimulate patients to think about their wishes regarding the end-of-life (e.g. treatment goals or their preferred place of death) and to talk about this to their family, friends, and healthcare professionals. Therefore, Oncokompas has the potential to contribute to the process of advance care planning (ACP). ACP is the process of discussing patients’ preferences concerning their healthcare, so that they receive the end-of-life care they desire [49]. Research showed positive effects of ACP on the quality of care at the end-of-life [49, 50]. ACP could also have a positive effect on the continuity of care (i.e. the information exchange between healthcare professionals to realize optimal integrated care) during the end-of-life. In its turn this is associated with higher quality of care and lower healthcare costs [51, 52].

In three previous studies on Oncokompas among patients diagnosed with glioma, breast cancer, and head and neck cancer, patients reported that they expected that Oncokompas would stimulate them in taking control and acting upon their symptoms [26, 53, 54]. In addition, one of these studies showed that breast cancer survivors’ activation level was significantly higher after using Oncokompas than before [54]. In 2016 a large RCT started to determine the efficacy of Oncokompas on patient activation and cost-utility among cancer survivors [55]; this study is still ongoing.

To summarize, there is a growing interest in eHealth to improve self-management among patients with chronic disease to emphasize the central role of patients in the management of their own disease and to reduce healthcare costs. This study could contribute to the evidence about the effectiveness of tailored eHealth interventions supporting self-management used in palliative care. When the results of this study show that Oncokompas is effective for patients with incurable cancer, this means that the application supports self-management among these patients. This might improve sustainable implementation and maintenance of the application in advanced cancer care.

This study is still ongoing. The recruitment of patients for this study started in January 2019 and is expected to be complete in June 2020. No publications containing the results of this study have been published or submitted to any other journal.