Influence of response shift and disposition on patient-reported outcomes may lead to suboptimal medical decisions: a medical ethics perspective

Abstract

Background Patient-reported outcomes (PROs) are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients’ response shifts (changes in interpretation) and dispositions (stable characteristics). Main text We identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution. Conclusion If influences of response shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used.

Implications of response shift for micro-, meso-, and macro-level healthcare decision-making using results of patient-reported outcome measures

“…Comparing conventional (invasive) cardiac valve surgery and a percutaneous noninvasive valve implantation: Surgery may induce more response shift, leading to improved PROM scores that would be expected based on health state. Since surgery is generally cheaper than a valve implantation, the combination of improved PROM scores and lower costs may lead to an incorrect preference for surgery over a percutaneous intervention (hypothetical example in [5] the result of the intervention rather than response shift, which allowed patients to be more aware of their condition and its symptoms.…”

“…If response shift is measured and taken into account [86], the results are expected to be more sensitive by teasing out the effect of adaptation leading to response shift from the actual health change, thereby providing a sound basis for medical decision-making. This is one of the first papers that started to outline possible influences of response shift on healthcare decision-making [5]. The currently described impacts may not be exhaustive nor sufficiently nuanced.…”

“…To date, the implications of response shift for healthcare decision-making have rarely been investigated [5]. Our goal is to provide a framework regarding the impacts of response shift at micro-, meso-and macro-levels of healthcare decision-making.…”

Patient‐reported outcome measures ( PROMs): making sense of individual PROM scores and changes in PROM scores over time

“…Changes in internal standards, personal values or conceptualization of PROs may result in a response shift and thus in an experienced HRQOL that differs from what would be expected based on one's change in clinical health status, that is, for instance, based on clinical parameters (ie, a decline in health status does not automatically imply a decrease in HRQOL). Changes may be induced by certain health‐ or life‐changing events (eg, getting a diagnosis, the start of a treatment or the loss of a loved one) and can also occur more gradually over time, for instance, in chronic diseases 9,24‐26 . It is proposed that changes in health or in life may interact with the patient's characteristics (eg, personality) and with mechanisms such as coping and social comparison, and consequently influence response shift 9 …”

“…At a group level, it may also be informative to gain insight into response shift for instance by comparing treatment effects to inform decision making 24 . For example, let us compare HRQOL scores of patients treated with haemodialysis (HD) and peritoneal dialysis (PD) at several time‐points during the first year of treatment (Figure 1).…”