Patient-reported distress in myelodysplastic syndromes and its relationship with clinical outcomes.
Troy, JD; deCastro, C; Pupa, MR; Samsa, GP; Abernethy, AP; LeBlanc, TW
Published in: Journal of Clinical Oncology
e21564 Background: The National Comprehensive Cancer Network (NCCN) defines distress as an unpleasant emotional experience associated with the psychosocial complications of cancer. 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 from ambulatory adult MDS patients visiting a single tertiary care medical center from July 2013-Sept 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, controlling for age and risk stratification at diagnosis (Low or Intermediate/High Risk by IPSS, IPSS-R, or WPSS), ever use of therapy (hypomethylating agents/lenalidomide/growth factors/transfusions/chelation), Charlson comorbidity score, ever-report of fatigue, and frequency of fatigue. Results: We abstracted 376 DT (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, a single-point increase on the DT was associated with an increased risk of death (HR = 1.18, 95% confidence interval: 1.01, 1.36). Conclusions: The distress burden is high inMDS, and patient-reported distress scores are associated with clinical outcomes after controlling for typical prognostic variables. Distress should be further studied as a marker of prognosis and of unmet needs in this population.
