A pilot study of subjective well-being in colorectal cancer patients and their caregivers

BACKGROUND: Traditional endpoints in oncology are based on measuring the tumor size and combining this with a time factor. Current studies with immunotherapy show that even when median survival is unaltered, a significant proportion of patients can achieve prolonged survival. Objective tumor response does not always mean “overall” improvement, especially if toxicity is harsh. Novel agents are significantly expensive, and it is therefore crucial to measure the impact on “quality” of life, in addition to “quantity”. MATERIALS AND METHODS: We studied the preferences and experiences of cancer patients and their caregivers, measuring subjective well-being (SWB) ratings, EQ5D descriptions and time trade-off preferences. RESULTS: We studied 99 patients and 88 caregivers. Life satisfaction ratings were similar between the two groups, but daily mood was significantly lower in caregivers (P<0.1). Anxiety/depression affected SWB, while pain and mobility did not. Positive thoughts about health were associated with better daily moods in both groups, and stage IV cancer was associated with lower life satisfaction. Cancer in remission was associated with better daily moods, but, interestingly, not with patient life satisfaction. Patients with better daily mood and positive thoughts about family were less willing to “trade-off ” life years. CONCLUSION: Caregivers are as anxious or depressed as patients, and report similar levels of life satisfaction but lower daily mood. A focus on SWB could provide a valid assessment of treatment benefit. Given the interesting results of this pilot study, we suggest a larger study should be conducted, measuring SWB over time.