Abstract
Objective: 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 follow-up strategy for patients after PRT to identify those in need of additional support. We developed an ePROM diary, together with patients and different health care providers (HCP), consisting of nine general and one to five site-specific PRO-CTCAE questions and one free text box where patients could add an additional symptom. The diary automatically generates self-management advice or the advice to contact an HCP depending on the severity of the reported symptoms. In this study, we evaluated the implementation process and assessed the usability of this diary in this PRT patient population.
Material/Methods: In this feasibility study patients were requested to complete the ePROM diary for a period of three weeks after PRT and to be interviewed on their experiences 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PRT, living in an assisted care facility or receiving daily (palliative) home care were not included, as our earlier (unpublished) implementation pilot study showed that these patients generally do not benefit from the diary. General practitioners (GPs) of patients who entered the study, were informed of this study as well as the symptoms and their treatment per letter.
Results: During the 10-week recruitment period, a total of 40 (77%) out of 52 eligible patients were included. Main reasons for participation were self-management and active care participation possibilities as well as the patients’ impression that HCP found the diary a valuable addition to their care. Of the 40 patients, 26 (65%) actively used the diary by completing at least one diary entry. 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 of these 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 most patients waited for a planned hospital consultation to discuss their symptoms. Three patients contacted their GP; most patients were not sure their GP would be able to answer all their questions. There were no patients that contacted our department: most patients felt a contact barrier for our department, as their PRT had finished. The 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.
Conclusion: An ePROM diary for systematic follow-up after PRT seems feasible and is positively received by patients. Further investigation is needed on the optimal duration and effectiveness of ePROMs in addition to strategies to integrate ePROMs in a larger multidisciplinary oncology follow-up scheme, supervised by one general contact.