Breast cancer survivors` recollection of their quality of life: Identifying determinants of recall bias in a longitudinal population-based trial

Abstract

BackgroundThe recollections of survivors of breast cancer are an important source of information about the disease for their family, friends, and newly diagnosed patients. So far, little is known about these memories. This study investigated how accurately survivors of breast cancer remember their past quality of life (QoL) during the disease and if this memory is modified by women`s present QoL and negative affect.Material and methodsThe longitudinal population-based study included 133 survivors of breast cancer (response rate 80%). Participants were asked for their present QoL and to recall their baseline QoL (EORTC QLQ-C30, QLQ-BR23) that had been assessed about seven years ago before discharge from hospital. The dependent variable was recall bias in ten QoL dimensions. Present QoL and negative affect (PANAS) were investigated as predictor variables.ResultsOverall, baseline QoL was retrospectively underrated on seven out of ten scales whereas no significant overestimation was found. In multiple linear regression analyses, controlling for confounders, a stronger underrating of QoL was significantly predicted by a lower present QoL on nine out of ten scales and by higher negative affect on six scales.ConclusionsSurvivors of breast cancer tend to underestimate their past QoL during the disease when asked about seven years later. Lower present QoL and higher negative affect contribute to this recall bias. This needs to be considered when interpreting retrospectively reported QoL data. Results are discussed in relation to theory of change or stability and mood congruency theory.

Experiences and interpretations of BRCA1/2 testing among women affected by breast or ovarian cancer who received a negative result

“…Although only 3 years on average had lapsed between genetic testing and study participation, the retrospective nature of the study design meant that data regarding perceptions of risk, relief and worry about testing were collected after the actual experience of testing. As such, responses are prone to recall bias and may have been coloured by experiences that have occurred since the time of testing (Lindberg et al 2017). Indeed, while data regarding the diagnosis of cancer among relatives of participants were collected, the dates of these diagnoses were not collected.…”

Cognitive Biases in Chronic Illness and Their Impact on Patients' Commitment

“…Studies have demonstrated a recall bias for somatic symptoms showing a retrospective overestimation of symptom severity (Broderick et al, 2008;Walentynowicz et al, 2015). Lindberg et al (2017) showed that breast cancer survivors' perception of past quality of life is significantly worse than it actually was (physical and cognitive functioning, fatigue, and pain). Patients with depression and pain recalled negative health-related information to a greater extent than the non-depressed controls and patients with depression or pain only, showing that the recall bias is exacerbated both bythe psychopathological and physical condition (Rusu et al, 2012).…”

Incorporating Patient-Reported Outcome Measures into Breast Surgical Oncology: Advancing Toward Value-Based Care

“…The literature furthermore shows that in multivariate analyses, many clinical and sociodemographic variables are associated with PRO scores. For example, time since treatment [32,34,60], age [34,61,62], response shifts (changes in internal standards that may affect how one responds to questions about HRQOL over time), and/or recall biases [63,64] were independently associated with PRO scores and frequently were more significant than clinical factors [30-34, 55, 65].…”