Abstract
This study assessed agreement between radiation oncologist- and cancer patient-reported perceptions about cancer diagnosis, time since diagnosis, treatment purpose, and whether life expectancy had been discussed; and described preferences for prognosis discussions. Adult cancer patients receiving radiotherapy at a Japanese hospital were invited to complete a touchscreen tablet survey. Patient survey responses were linked and comparisons made with a survey completed by their radiation oncologist. Among 146 cancer patient-oncologist dyads, there was almost perfect agreement on cancer diagnosis (ĸ = 0.88, 95% CI: 0.82–0.94), substantial agreement on time since diagnosis (ĸ = 0.70, 95% CI: 0.57–0.83) and moderate agreement on whether treatment goal was curative or palliative (ĸ = 0.44, 95% CI: 0.28–0.57; all p’s < 0.0001). Agreement about whether a life expectancy discussion had occurred was less than expected by chance (κ = -0.06, p = 0.9). Radiation oncologists reported that they had spoken to over two thirds of patients about this, whilst less than one third of patients stated that this discussion had occurred with their radiation oncologist. Over half of the patients who had not discussed life expectancy wanted to. Patients had variable preferences for whether they (80%), their radiation oncologist (78%) or their partner/family (52%) should decide whether they discuss their life expectancy. Although patient self-reported information about diagnosis and time since diagnosis appears to be reasonably accurate (compared with clinician-reported information), limitations of self-reported data about prognostic discussions were highlighted by poor agreement between patient- and clinician-reported information about whether prognostic discussions have occurred. Additional support is needed to improve prognosis communication and understanding in radiation oncology settings.
Highlights
Cancer is a leading cause of death and morbidity worldwide [1]
A total of 16 radiation oncologists participated in the study
Four radiation oncologist surveys were missing the unique ID number required for data linkage, and one radiation oncologist survey was not returned to the research team
Summary
Cancer is a leading cause of death and morbidity worldwide [1]. For patients, having an accurate understanding of their diagnosis, prognosis and goals of treatment can facilitate informed treatment decision making [2] and can influence important patient-centred outcomes such as reduction in aggressive end-of-life medical care and improvements in quality of life [3, 4]. Few studies have examined agreement between oncologist-reports and cancer patients’ understanding of their diagnosis [13], purpose of treatment [14], preferences for and perceptions of life expectancy discussions [15,16,17]. While up to 81% of cancer patients in Western countries want to discuss their life expectancy [5, 6], it has been reported that a smaller proportion of patients in Japan want this information [18]. A more paternalistic approach to diagnosis and prognosis disclosure, where their doctor and/or family decides if and how much patients are told, may be more common in non-Western cultures [22,23,24]. A study with 201 patients and 40 physicians in Japan more than two decades ago identified that clinicians typically underestimated the level of information that patients wanted [13]
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