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Adequate management of treatment-related symptoms or cancer-related complaints persisting after palliative radiotherapy (PRT) is essential for maintaining or optimizing patients’ quality of life. Electronic Patient-Reported Outcome Measures (ePROMs) could be a low-threshold method to follow patients after their treatment to identify those in need of additional support, as shown in advanced cancer patients receiving chemotherapy. In this study, we implemented ePROMs to monitor patients after PRT to evaluate the implementation process and assess usability of ePROMs in this patient population.

Based on our earlier (in part unpublished) research, an ePROM diary consisting of nine general and one to five site-specific PRO-CTCAE questions on the most common symptoms after PRT was developed. In addition, a free text box where patients could add an additional symptom was included. The diary automatically generated self-management advice in case of limited symptoms plus the advice to contact a health care provider (HCP) for severe symptoms. Patients were asked to complete the diary for a period of three weeks after PRT and to be interviewed afterwards. Included patients were Dutch-speaking with Karnofsky Index of ≥60 treated with PRT. Patients hospitalized during and after PRT, living in an assisted care facility or those receiving daily palliative home care were not included, as our previous study showed that these patients generally do not benefit from the diary.

Results: During a recruitment period of 10 weeks, a total of 40 (77%) out of 52 patients that were offered the diary were included. Of these patients, 26 (65%) actively used the diary by completing at least one diary entry. Main reasons for study participation were self-management and active care participation possibilities as well as the feeling that the diary was deemed important by HCP. All 26 active participants were positive about the diary, with 21 willing to use it again in case of re-irradiation and 20 advising others to use it. All questions were perceived as relevant and easy to answer. The free text box was viewed very positively, with several patients suggesting adding more to further individualize the diary. The self-management advice was seen as helpful although generic. The advice to contact a HCP was considered useful, although some patients were not sure who to contact. Main reasons for not starting or prematurely stopping the diary were limited symptom burden and having to complete multiple diaries for different treatments in the same timeframe.

ePROMs for follow-up after PRT seem feasible and are positively received by patients. Further investigation is needed on the optimal duration and effectiveness of ePROMs as in addition to offering strategies, such as integrating ePROMs in a larger multidisciplinary oncology follow-up scheme, supervised by one general contact.