No study defined patient time in patient-reported terms: a review of how care burden is measured in cancer

A systematic review by authors from Singapore searched MEDLINE, EMBASE and the Cochrane Library to 10 March 2026 for studies that defined or measured the time burden patients bear in cancer care, sometimes called time toxicity Synthesis (Wee et al., PMID 42809115). It included 56 studies, 80.4% of them observational and 51.8% from the United States. Time was most often defined as direct healthcare time (31 studies, 55.4%): days with clinic visits, treatment, hospitalisation or emergency department attendance. Measures of time away from healthcare, including days alive and out of hospital and days at home, appeared in 20 studies (35.7%), and non-clinical or logistical process time in five (8.9%).

No study used a patient-reported definition. Most measures were derived from administrative, electronic health record or trial data, so they capture healthcare use and not how patients experienced the time or whether they valued it. The authors propose a framework of three objective domains (direct healthcare time, time away from healthcare, and healthcare process time), with patient-reported experience as an evidence-informed extension.

The limits are plain. The review is specific to cancer, and its evidence base is mostly observational and American. The domains may transfer to frailty and community pathways, but the evidence for them does not. Its relevance here is as a vocabulary for counting patient time, and as confirmation of a gap: systems measure how much time care takes from a person far more readily than whether that time was worth spending. It loosely extends the published pattern on measurement fidelity from handover to outcome measurement, but it is a looser extension than corroboration, and every study in it is from oncology.