Nicole Billingy, MSc
Amsterdam UMC

“But we’re already easy to reach. Patients know where to find us if there are symptoms.” This was often the initial response when we introduced the SYMPRO-Lung study to pulmonologists and specialized oncology nurses in participating hospitals back in 2019. The SYMPRO-Lung study explored the effect of a simple online tool on health related quality of life (HRQL): a weekly symptom checklist that lung cancer patients filled out online to monitor their symptoms. An alert was sent out if a symptom of a patient crossed a certain threshold. In line with previous research, these alerts were sent to the health care providers (HCPs) in the active intervention group, who then contacted the patient to intervene when deemed necessary. Previous studies had shown positive results in linking the PROMs to an alert system for the HCPs. However, its integration into standard care has progressed slowly. One reported reason was that it added extra work to their already busy schedules. Therefore, we added an additional intervention group where patients themselves received the alerts (reactive intervention group) and were advised to contact their HCPs.                 

The concern of the HCPs about the extra work was underscored by the COVID-19 pandemic in 2020, which highlighted a looming shortage of healthcare workers. Also now in 2023, international cancer organizations are concerned about workforce shortages in the short and long term. On the other hand, the pandemic revealed that patients were willing to embrace online telemonitoring as a supportive tool during their treatment.

The SYMPRO-Lung trial, which will be presented at the 2023 ISOQOL conference in Calgary (Oral session 101.1), showed an improved 1-year HRQL for patients in both intervention groups compared to the standard care control group. No significant differences were found in effectiveness between the active and reactive intervention group. This allows HCPs to employ the symptom monitoring approach that best aligns with their and their patients’ preference. Interestingly, when patients were in charge of their alerts, they contacted HCPs less frequently, which lightened the workload for HCPs. This suggests that allowing patients to stay in control of their own symptom management could indeed be a logistically less intensive approach for HCPs, while achieving the same positive impact on patients’ HRQL.

This aligns with the recent call from the Dutch patient federation to give patients more autonomy on their own treatment by embracing digital tools. Our forthcoming paper will shed light on the facilitators of and barriers to implementing symptom monitoring in standard care. In terms of improving the symptom monitoring tools, based off the lessons learned, we truly believe that online symptom monitoring is a valid solution to supporting HCPs in improving patient care while decreasing their workload.

Currently many studies face problems in truly implementing patient-reported symptom monitoring into real-world clinical practice. The short-term costs, both in terms of time and effort required to adapt their workflow, do not seem to outweigh the proven long-term benefits, according to HCPs. This brings us back to their starting point: “But we’re already easy to reach. Patients know where to find us.” Future research should focus on resolving these barriers, transforming HCPs’ perspectives from skepticism to enthusiasm, and aligning it with the experiences of patients and their improved HRQL.

The SYMPRO-Lung study is a collaboration between Amsterdam UMC, the Netherlands Cancer Institute, Radboudumc and the Netherlands Comprehensive Cancer Organisation, funded by Innovatiefonds Zorgverzekeraars, Roche NL and Stichting Kwaliteitsgelden Medisch Specialisten.

Abstract will be presented in Oral Session 101 on Thursday, 19 October, 1:45 pm – 3:15 pm. 

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.