Response Shift and Understanding the Illness Journey

We often find that people living with life-threatening and life-altering diseases have remarkably positive outlooks on their lives. Some are even happier than they were prior to diagnosis.

Studies of quality of life among people with cancer indicate something similar: Contrary to what we might expect, people with cancer do not self-report lower quality of life than the general population.

Why might this be?

Simply put, people adapt. The phenomenon of “response shift” describes how a catalyst—in this case, a change in health status—leads to behavioral, cognitive, and affective adaptations. These might include coping strategies, such as reframing expectations or engaging in spiritual practice. Ultimately, these adaptations shift values, priorities and expectations and, in turn, how one self-evaluates their quality of life. What it means is that internal standards adjust to a new normal, so what an outsider may perceive as being “worse off” may not be experienced as such.

How does response shift impact our approach to researching patient journeys?

Quality-of-life self-evaluations may not capture the internal shifts someone experiences when they face a significant life change. This highlights the need for in-depth qualitative research. At Throughline Strategy, we explore the behavioral, cognitive, and affective adaptations among people with life-altering disease and deeply understand the related shifts in the context of values, priorities, and expectations. At the end of the day, these insights help our clients design solutions that support patients to positively adapt to their new realities with minimal compromise.

Breetvelt, I. S., & Van Dam, F. S. A. M. (1991). Underreporting by cancer patients: The case of response-shift. Social Science & Medicine, 32(9), 981–987. https://doi.org/10.1016/0277-9536(91)90156-7

Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine, 48, 1507-1515.