Purpose
The National Comprehensive Cancer Network (NCCN) defines distress as a multifactorial, unpleasant emotional experience of a psychological nature that may interfere with patients’ ability to cope with cancer symptoms and treatment. Patients with myelodysplastic syndromes (MDS) are at risk for distress given the largely incurable nature of this hematopoietic malignancy, and its symptom burden, yet associations with clinical outcomes are unknown.
Methods
We retrospectively reviewed patient-reported distress data from ambulatory adult MDS patients visiting a single, tertiary care medical center from July 2013-September 2015. Demographic, diagnostic, treatment, and comorbidity information were abstracted from records along with the NCCN Distress Thermometer (DT) and Problem List (PL). Survival was analyzed using the Kaplan-Meier method and Cox proportional hazards regression.
Results
We abstracted 376 DT scores (median=1, range=0-10) from 606 visits and 110 patients (median=2 DT/patient, range=1-16). NCCN guidelines suggest DT >=4 should be evaluated for referral to specialty services to address unmet needs. Fifty-four patients (49%) had at least 1 DT >=4 and 20 (18%) had 2 or more DT >=4. Ninety-eight patients (89.1%) reported 1,379 problems during 23,613 person-days of follow-up (median=4 problems/patient/visit, range=1-23). The 5 most frequent were fatigue (181 times; 78 patients), pain (95 times; 46 patients), worry (80 times; 45 patients), sleep (78 times; 41 patients), and tingling hands/feet (68 times; 33 patients). After adjustment for risk stratification at diagnosis, a single point increase on the DT was associated with an increased risk of death (hazard ratio=1.18, 95% confidence interval: 1.01, 1.36).
Conclusion
MDS patients experience a high burden of distress, and patient-reported distress is associated with clinical outcomes. Distress should be further studied as a prognostic variable and a marker of unmet needs in MDS.