Patient-Reported Distress in Myelodysplastic Syndromes and Its Association With Clinical Outcomes: A Retrospective Cohort Study

Abstract

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.

Unmet Supportive Care Needs of Patients with Hematological Malignancies: A Systematic Review

“…Twelve cross-sectional studies,[ 16 18 26 27 28 29 30 31 32 33 34 35 ] three prospective studies,[ 22 23 24 ] one retrospective study,[ 17 ] and four qualitative studies[ 19 20 21 25 ] were included. Studies were mainly single centered.…”

“…There was a heterogeneity in the sample of the studies. Seven studies included patients with all the hematological malignancies (lymphoma, leukemia, and myeloma),[ 16 18 28 29 30 31 35 ] three studies included patients with diffuse large B-cell lymphoma and myeloma,[ 22 23 24 ] three with acute leukemia,[ 19 26 32 ] three with lymphoma,[ 20 25 27 ] two with myeloma,[ 21 34 ] one study included patients with myelodysplastic syndromes,[ 17 ] and one with leukemia and lymphoma. [ 33 ]…”

“…There is a mass representation of the Australian population,[ 21 22 23 24 25 28 29 30 31 35 ] followed by patients from the USA and Canada. [ 17 19 32 33 ] Two studies were conducted in the UK,[ 20 34 ] and one study in Greece,[ 16 ] China,[ 26 ] and Korea. [ 27 ]…”

“…Three studies were evaluated at Level II,[ 22 23 24 ] 12 studies were evaluated at Level III,[ 16 18 26 27 28 29 30 31 32 33 34 35 ] and five studies at Level IV. [ 17 19 20 21 25 ]…”

A Model of Cross-Disciplinary Communication for Collaborative Statisticians: Implications for Curriculum Design

“…The problem list is not considered here. A similar use of the DT is described elsewhere (Troy et al, 2018). Figure 2 illustrates the data collection schedule for an illustrative patient.…”