Evaluation of electronic patient-reported outcome assessment with cancer patients in the hospital and at home

Patient-reported outcomes (PRO) regarding symptoms and quality of life (QOL) have become an important part of cancer clinical trials and routine care, as there is strong evidence that clinicians’ ratings alone do not present a complete picture of cancer patients’ symptom burdens [1‐5]. Studies emphasise the additional benefit of the use of PROs (improved symptom management [6], better identification of intimate or psychosocial problems [7], enhanced communication between health care professionals and patients [7‐9]) and the administration of validated questionnaires via specialized software helps to overcome common implementation barriers to the routine use of PROs (e.g., administrative obstacles, concerns that electronic assessments might use more resources than they save) [10, 11]. Electronic PRO (ePRO) assessment is generally well accepted by patients [6, 12] can be conducted in an efficient and timely manner, and both in clinical settings and in patients’ homes. Web-based home monitoring offers insight into the “black box” of a patient’s condition between hospital visits, a parameter that is systematically overlooked by QOL assessment restricted to the hospital setting. The large number of by now available specialized software solutions for ePRO assessment, predominantly developed within English speaking countries and offering a variety of data collection and educational features [13, 14], mirrors the growing interest in ePRO assessments. However, ePRO assessments require a certain level of patients’ computer literacy; therefore, patients’ habits and attitudes regarding the use of new technologies (devices and technologies, which can be summed up under the umbrella term “new media”, e.g., computers, smart phones, and the internet) are particularly important. Devices for internet access and internet infrastructure are becoming increasingly affordable and easy to manipulate. Nevertheless, some groups (e.g., older, computer-illiterate, or socioeconomically disadvantaged patients) might be put at a disadvantage when data collection is conducted mainly via new media (i.e., computer-based assessments via internet-ready devices), as familiarity with such devices seems to play an important role for implementation of ePRO and patient recruitment [15, 16]. Though, available statistics suggest that actual existing problems with lacking familiarity with or open-mindedness to computer and internet-ready devices might vanish in the course of time. For instance in the Austrian general population in 2014, about 40 % of persons older than 65 years access the internet on a regular basis (a slightly more than tenfold increase since 2002), roughly a third of these using mobile devices [17]. Nearly as many cancer patients aged 66 to 99 years reported the availability of their own internet connection and at least occasional use of the internet [12]. Given the actual technical development, this number can be expected to further increase. Nevertheless, the feasibility and user-friendliness of used software solutions for ePRO assessment need to be evaluated for optimization of applied systems.

This study reports on an evaluation of routine PRO assessments using a specialized software within two contexts: first, as an assessment of patients’ QOL before a follow-up/treatment appointment in a hospital setting (clinic-ePRO), and second, as regular monitoring of the symptom burden of chemotherapy outpatients in the home setting (home-ePRO).

The patients included in our study were relatively high experienced in internet use, in general open-minded towards ePRO assessments, rated them to be useful and would continue regular QOL-monitoring. CHES was well accepted and offered a user-friendly as well as feasible system for different assessment settings. In spite of this overall positive feedback, some previously identified implementation barriers of routine ePRO were replicated, and new ideas for further research areas could be generated.

As disclosed by both our study and the available literature, many important issues for successful implementation of ePRO in the routine clinical setting and at patients’ home can be identified. Efforts are needed not only to improve infrastructure for internet access, but also to encourage patients to use the internet for obtaining medical information and transmitting their health status and QOL information to providers [21]. Furthermore, to echo Rose and Bezjak [22], the person tasked with explaining the concept and implementation of QOL assessments, and instruments like home-ePRO in particular, is crucially important. Older people are particularly prone to have reservations concerning modern computer technology and need to be properly approached. This fact was demonstrated in our study when the most frequently cited reason for refusal of regular QOL-assessment was concern regarding the handling of an internet-enabled device. Simply providing user-friendly devices is not enough; older and/or computer-illiterate patients also need opportunities to familiarize themselves with the devices. Robben et al. [23] suggest another aspect that should be carefully considered, particularly among older patients: Aside from specific stand-alone training programs (such as heart-healthy eating or stress prevention strategies), web-based health applications should not be introduced without general information about the supplemental nature of these electronic tools. Fear of losing personal contact with health care professionals might deter patients from participating in home-ePRO, even if they are generally able to handle the necessary technology. Especially clinic-ePRO patients perceived the electronic assessments to be too impersonal and not coming up to their personal situation. Though we do not know how ePRO data was used by the clinicians of the Medical University of Innsbruck (it was available on their desktop PC), one might hypothesize that this negative perception of clinic-ePRO might relate to an insufficient integration of assessed data into the medical consultation. Further research needs to assess the use of ePRO data of health care professionals within the medical consultation and how this might influence patients’ perception of PROs.

As in other studies, most of our patients appreciated clinic-ePRO and were favorable to its extension from the hospital setting into their homes. Similarly to the results of Broering et al. [24], between 60 (home-ePRO) and 67 % (clinic-ePRO) of our patients stated a preference for an electronic mode of data collection for future PRO assessments. In addition, the vast majority of clinic-ePRO as well as home-ePRO patients (at least 97 per cent) did not perceive the assessment as too complex, difficult or the technical requirements as too extensive. Nonetheless, the phenomenon of a digital divide can be seen, especially for older patients, as patients who refused ePRO assessments at the Kufstein County Hospital or chose phone calls over home-ePRO were approximately 10 years older than home-ePRO participants. Those patients, who like to deal with new technologies and the internet, therefore, have a clear advantage over those who are not familiar with new media. Patients’ socioeconomic status may be of importance as well, and although technical progress continues to bring increasing affordability, future studies should also attend to this issue.

Some limitations of the study should be mentioned, as those restrict the generalizability of the reported results. First, some patients may have been especially motivated to participate in home-ePRO because of the provision of the iPad2, including the preinstalled iOS app. Because completion of the questionnaire was slightly more laborious via a web browser, one might hypothesize that without loaner devices, inclusion rates would have been lower. Second, an age bias emerged as older patients declined participation or preferred regular phone interviews to home-ePRO via an iPad2 or a website. It may be reasonable to assume that those patients also differed in terms of available internet equipment, user experience, and affinity for new media. Therefore, a digital divide may have put those patients at a disadvantage and their higher refusal rates may have whitewashed the overall study results, as only one third of all eligible patients agreed to use home-ePRO. Third, though the number of eligible patients and reasons for refusal were in detail assessed at Kufstein County Hospital, this was not the case at Medical University of Innsbruck. Consequently, we neither know how many patients were approached to participate in clinic-ePRO and its evaluation nor why they did not want to provide PRO-data or to evaluate the used ePRO software. Fourth, it should be noted that the clinic-ePRO group predominantly comprised a large number of relatively healthy and young testicular cancer patients. Those patients represent a quite specific sample of cancer patients, whose attitudes and opinions might differ from a mixed cancer patient sample undergoing active treatment. Overall, the results of our study primarily are based on data provided by patients, who seem to be especially open to ePRO from the outset. Further evaluation of CHES within a more heterogeneous sample of cancer patients should to be done.

In line with other study results, our patients well accepted clinic-ePRO and home-ePRO and experienced it to be feasible. However, we must bear in mind that many patients declined to participate owing to computer illiteracy or worries about their own capability to handle the assessment device. To be more inclusive in the implementation of patient monitoring tools in daily clinical practice, the medical community will need to address several persistent doubts. Physicians as well as patients need further information about the complementary nature of PROs, which cannot replace the conventional medical consultation, but help to detect disturbing symptoms earlier, thereby allowing better structuring and more effective use of time in face-to-face encounters between patients and providers.