What happens to people after malignant cord compression? Survival, function, quality of life, emotional well-being and place of care 1 month after diagnosis

Aims: To present further findings from the Scottish Cord Compression Study, in which the diagnosis, management and outcome of 319 patients with a definitive diagnosis of malignant cord compression (MCC) were examined. Materials and methods: In total, 256 (80%) patients in the study consented to be interviewed shortly after diagnosis and at follow-up interviews. One hundred and twenty-eight patients were interviewed 1 month after diagnosis (40% of the total; 57% [128/224] of patients alive 1 month after diagnosis; 68% [128/188] of patients who also consented to follow-up). Survival data of the whole MCC population and data from interviewing 128 patients 1 month after diagnosis are presented. Results: The median survival of all patients was 59 days (95% confidence interval [CI] 43-75 days). The median Karnofsky performance status was 50 (interquartile range 40-60), indicating a need for considerable nursing and medical care, and was poorest for patients with lung cancer (median 40; interquartile range 30-60). The place of care was dependent on mobility at diagnosis; patients walking at diagnosis were more likely to be at home, whereas patients requiring assistance or who were unable to walk were more likely to be in institutional care (P = 0.019). Mobility and bladder function were determined by mobility and bladder function at diagnosis (P < 0.001). Of those unable to walk at diagnosis, 7% regained full mobility. Of those catheterised at presentation, 28% regained full bladder function. Forty-seven per cent (56/120, 95% CI 40-54) of patients interviewed were in pain despite oncological treatment and 18% (22/120; 95% Cl 8-19) reported the pain as severe (visual analogue scale > 7). The median quality-of-life (Schedule for Evaluation of Individualised Quality of Life) score was 72/100, and was higher in patients with a better performance status (P = 0.026). A minority of patients (8%) screened positive for anxiety and depression using the Hospital Anxiety and Depression scale. Conclusions: Notwithstanding the difficulties in following up this group of patients, this paper reports valuable findings detailing the experience of patients with MCC 1 month after diagnosis and treatment.