Quality of Life in Chordoma Co-Survivors: Results from the Chordoma Foundation Survivorship Survey

Background: Chordomas are a rare form of aggressive bone cancer and are associated with poor quality of life (QOL). The present study sought to characterize demographic and clinical characteristics associated with QOL in chordoma co-survivors (caregivers of patients with chordoma) and assess whether co-survivors access care for QOL challenges. Methods: The Chordoma Foundation Survivorship Survey was electronically distributed to chordoma co-survivors. Survey questions assessed emotional/cognitive and social QOL, with significant QOL challenges being defined as experiencing ≥5 challenges within either of these domains. The Fisher exact test and Mann-Whitney U test were used to analyze bivariate associations between patient/caretaker characteristics and QOL challenges. Results: Among the 229 respondents to our survey, nearly half (48.5%) reported a high number (≥5) of emotional/cognitive QOL challenges. Co-survivors younger than 65 years were significantly more likely to experience a high number of emotional/cognitive QOL challenges (P < 0.0001), whereas co-survivors >10 years past the end of treatment were significantly less likely to experience a high number of emotional/cognitive QOL challenges (P = 0.012). When asked about access to resources, a lack of knowledge of resources to address their emotional/cognitive and social QOL issues (34% and 35%, respectively) was the most common response. Conclusions: Our findings suggest that younger co-survivors are at high risk for adverse emotional QOL outcomes. In addition, more than one third of co-survivors did not know about resources to address their QOL issues. Our study may help guide organizational efforts to provide care and support to patients with chordoma and their loved ones.