The greatest motivating factor is when patients’ PRO data are reviewed by the responsible HCPs, taken into account during consultations, and incorporated into their care. Patients do not always expect the HCPs to do something about the symptoms, but want to be acknowledged. Discussing the PRO data itself can help to inform patients and let them feel seen, heard and understood.
If a patient does not wish to complete PROMs after explanation, this should be respected.
“I would be keen to complete the PROMs if I was told that it would help my recovery and stop small problems growing into big problems. Cancer treatment and its aftermath is complex and PROMs can’t solve everything but they can help HCPs to offer solutions sooner rather than later. I wanted to know if my journey was ‚normal‘ and the symptoms and timescales were comparable to other patients going through similar treatments.
The barriers to completion are physical and psychological. Being ill makes you tired and depressed for at least some of the time. You have to sometimes push yourself to complete PROMs. Sometimes, the categories of questions do not exactly reflect my situation. This can make it seem less useful. […] Another problem is that sometimes the patient is not sure whether the symptoms are directly or solely caused by cancer treatment or whether they might be caused or influenced by other sudden or long-term health conditions. Guidance on this would be really helpful.”
Schultz, Alvarez & Nikendei 2018; Aiyegbusi et al. 2022; Nordhausen et al. 2022; Amini et al. 2021; Tieu et al. 2017, Calvert et al. 2022; Van der Willik et al. 2022
