Cancer and its treatment result in a wide range of physical and psychological challenges, some of which may appear years later [1], and current models of survivorship care may not be sustainable [2]. Therefore it seems imperative that cancer survivors play a more active role in their health care. One way to support this active role may be by enhancing their levels of empowerment, which encompasses being autonomous and having the knowledge and psychosocial and behavioral skills to influence one’s health in a positive way [3]. eHealth programs may be helpful to support aspects of patient empowerment in individuals with chronic diseases and also cancer survivors [3,4]. eHealth programs can improve aspects of empowerment by enhancing patients’ knowledge of their disease and treatments and about their own health status (eg, via patient-reported outcomes [PROs]) [3].

To date, many eHealth services in oncology have been developed for breast and prostate cancer patients [5]. Although lung cancer has a high symptom burden, very few eHealth applications have been developed recently to support this patient population, mainly related to symptom monitoring [6-11]. To support lung cancer patients in the Netherlands Cancer Institute Antoni van Leeuwenhoek Hospital (AVL in Dutch), we developed an interactive portal (MijnAVL; MyAVL in English). MyAVL includes patient education, an overview of appointments, access to the electronic medical record (EMR), PROs with feedback of the scores, and tailored physical activity support. We developed MyAVL and selected its most relevant features following a stepwise approach: literature review [4], focus groups with patients and health professionals [12], acceptability testing based on mock-ups, and usability testing of functional prototypes [13].

The aim of this study was to evaluate MyAVL’s feasibility and usability and to generate preliminary evidence on its impact when used by lung cancer patients.

MyAVL, an eHealth program developed in an oncology setting, was found to be feasible, easy to use, and useful by the majority of the lung cancer patients who participated in the study. Access to the EMR and the overview of appointments were evaluated very positively and used quite frequently. We expected positive effects of access to the EMR in terms of improved knowledge, autonomy, self-efficacy, and patient-clinician communication [21]. Our results supported this in part: 61% (17/28) reported that this information enhanced knowledge of their disease and 43% (12/28) indicated that it enhanced their sense of control over their disease. In general, patients indicated that they would prefer access to their full medical record and access to medical test results as soon as they have been reviewed by a professional. Reassuringly and similar to other studies [22,23], very few patients reported that having access to the EMR led to feelings of (mild) anxiety. At the same time, our measures of impact (ie, PAM, SF-36, and IPAQ) indicated no improvement over time. In fact, there was a significant, albeit small, decrease in PAM scores. One explanation may be that these outcome measures are not responsive enough to the possible effects of the portal or that the “dose” was not strong enough. For future trials on these types of interventions, more tailored or specific outcome measures may be needed. The supporting effects of MyAVL (and patient portals in general) may be further increased by adding features focused specifically on coping and symptom control [3].

eHealth in lung cancer patients is a relatively new occurence, and few studies have been published. Most of these studies are related to symptom monitoring [7,8,10,11], which is very different from our multicomponent intervention. One study by Gustafson et al [9] reported the results of a trial in which they compared the use of a comprehensive online intervention (Comprehensive Health Enhancement Support System [CHESS]) with standard Internet access in palliative lung cancer patients and especially their caregivers. CHESS included information, communication with and support from peers, coaching feedback based on user input, and tools to organize support from family and friends. The researchers found that caregivers in the CHESS arm consistently reported lower patient physical symptom distress than caregivers in the Internet arm. Unfortunately, we did not measure symptom distress in our study so we cannot compare our findings on this aspect. The actual use they reported was quite low, with only 73.4% of caregivers and 50% of patients accessing CHESS at least once. In contrast, in our study, 34/37 patients (92%) used the application more than once. This higher use may be related to our patient sample as we only included patients who were treated with curative intent. These patients may be more capable or willing to use supporting eHealth programs than patients who receive palliative treatment. Median length of use in the Gustafson study was 103 minutes for caregivers and 146 minutes for patients, compared to a mean log-in time of 12.9 minutes in our study. This large difference might be related to the broader range of supporting tools included in CHESS.

Difficulty with patient accrual appears to be a common theme among eHealth studies in lung cancer patients [9,11]. We are not aware of any direct comparative data on interest in or use of eHealth by different cancer patient populations. However, in our study, the participation rate of patients who could be contacted was 42%, whereas in a previous study of breast cancer patients the participation rate was higher (52%) [14]. One could thus argue that lung cancer patients may be less willing to participate in such interventions. Several previous studies, including Gustafson et al [9] and Cleeland et al [11], recruited fewer patients than planned. On a positive note, those patients who did participate in our study were, in general, very satisfied with the portal. Thus for interested and motivated patients, such eHealth approaches may be very suitable.

Despite the large potential benefits of exercise [24], the physical activity support program was used by only one-third of participants. Those who received intensive treatment (eg, chemoradiotherapy) were particularly unlikely to use the program. This may be an indicator of limited feasibility of this part of the portal for these patients.

We observed relatively good compliance with completing PROs during the study period, which may be due to the fact that the PROs are perceived as part of their integrated care [25]. The accessibility of MyAVL may be further enhanced by simplifying the authorization/access procedure (Table 2).

A clear limitation of this study is the low participation rate and resulting small sample size. This small and select sample of patients may limit the generalizability of our findings, as participating patients may differ from the majority of lung cancer patients. Additionally, several components of the portal (eg, the Keep Fit component) were not used by every patient, which led to evaluations of these components by a relatively small number of patients. This might indicate that these components are less feasible for lung cancer patients. The limited number of patients in the focus group may not fully represent the views of the total group of patients. A final limitation is that patient knowledge of their disease was measured by self-report and not measured objectively, which may be subject to bias.

In conclusion, MyAVL appears to be a feasible and user-friendly multifunctional eHealth program for patients with lung cancer, although participation rate was quite low. Additional efforts are needed to increase the reach and effect of the program in terms of patient empowerment and to increase the attractiveness, perceived value, and use of the patient education and physical exercise elements of the program.