Palliative radiotherapy is applied to relieve suffering from cancer-related symptoms, lengthen life and to provide the best possible quality of life (QoL). Therefore, it is prescribed as to maximize effect while minimizing treatment burden by means of a limited number of radiation sessions. Due to its delayed effect, treatment-related symptoms or progression of persistent disease-related complaints usually occur when patients are already at home. Typically, this is either in between hospital-based consultations, with patients experiencing a barrier for contact, or while patients receive best supportive care by primary health care professionals, who may have limited knowledge of (palliative) radiotherapy.
Electronic Patient Reported Outcomes (ePROs) are well utilized in radiation oncology research, but they tend to be mostly used as a benchmarking tool. However, in palliative radiotherapy, they could also offer a minimally invasive follow-up solution for palliative patients: ePROs can be completed at home, uploaded into the patient’s medical file and reviewed by a health care professional. Important symptoms can even be flagged, to make them stand out. Additionally, reminders for completion, tailored self-care advice and contact information of health care providers can be sent to patients automatically.
It has already been shown that regular completion of (e)PROs has an impact on symptom-management and even survival in advanced cancer patients receiving chemotherapy. However, these benefits have not been proven in palliative radiotherapy as of yet. There are many validated (e)PRO measures (PROMs) available, most of them focusing on general or disease-related QoL. With the current data, it is difficult to say which PROM is most appropriate and will provide the most meaningful data for the palliative radiotherapy setting, especially in the case of clinical follow-up. Follow-up of specific symptom occurrence from either treatment or disease progression may be a more relevant endpoint for palliative radiotherapy patients than general QoL.
There is no data on patients’ acceptability, experience and adherence to more intensive ePROM completion, as needed for follow-up after palliative radiotherapy, compared to completion for benchmarking, which usually requires less effort.
Our own exploratory research has shown that the majority of palliative radiotherapy patients would be willing to complete ePROMs on a regular basis if they would be used for follow-up. Built-in self-management strategies, such as self-care information and feedback on when to contact a health care provider can further encourage patients to use ePROMs. Focusing on self-management could give patients a feeling of independence. Part of a self-management strategy is to let patients to play an active role in their care and provide them with professional assistance when they deem this necessary. This strategy may make ePRO-based follow-up after palliative radiotherapy more feasible, because contacting a health care professional for advice remains the responsibility of the patient. Active e-PRO follow-up by health care professionals is also a possibility. However, following frequent ePROs of this relatively large patient population as well as providing and planning (telephone) consultations in case of increasing symptoms, may interfere with a patient’s freedom and independence. The additional workload of this second approach could also be a major barrier for ePRO implementation in daily practice, as this would probably require extra staff.
In order to make ePROs after palliative radiotherapy a real success, one should make an effort to make them a part of a general, multidisciplinary palliative care policy. Ideally this would entail that ePROs for radiotherapy, chemotherapy and general wellbeing are offered to the patient, depending on their current treatment situation and be made available to multiple health care providers in and outside of hospital.