Patient-reported distress in adults with myelodysplastic syndromes (MDS).

80 Background: MDS are hematopoietic malignancies that are incurable in most patients. The National Comprehensive Cancer Network (NCCN) defines distress as an unpleasant emotional experience associated with the psychosocial complications of cancer that may interfere with quality of life. Distress is not well described in MDS and may be useful to screen for palliative care needs.

METHODS: We conducted a retrospective review of distress in ambulatory adult MDS patients visiting our clinics from July 2013 to September 2015. We abstracted demographic, diagnostic, and comorbidity data from records along with the 10-point ordinal NCCN Distress Thermometer (DT) and its 39-item Problem List (PL). NCCN guidelines suggest DT scores ≥ 4 be evaluated for referral to psychosocial resources.

RESULTS: We included 119 patients (median age = 68, range = 30-88 years; 73.9% White; 67.2% male; 29.4% with prior cancer). Half were low-risk and 5 progressed to AML. Twenty-three (19.3%) had ≥ 1 hospitalization and 10.9% had > = 1 emergency department visit. Ten patients died; 1 was referred to counseling and 1 used hospice. Three others were referred to counseling and no patients had a palliative care consult. There were 366 DT (median distress = 1, range = 0-10) across 580 visits and 106 patients (median = 2 DT/patient, range = 1-16). Fifty-two patients had at least 1 DT ≥ 4 and 19 had 2 or more DT ≥ 4. With patients classified by their maximum DT (median = 3, interquartile range = 1-7) ever-use of therapy (hypomethylating agents/lenalidomide/growth factors/transfusions/chelation) was associated with greater maximum DT (median = 4, range = 0-10, N = 73) compared with no therapy (median = 2, range = 0-9, N = 33; P = 0.03, 2-sample Wilcoxon test). Ninety-five patients reported 1,335 problems during 22,846 person-days of follow-up (median = 4 problems/patient/visit, range = 1-23). The 5 most frequent problems were fatigue (176 times; 76 patients), pain (92 times; 44 patients), worry (77 times; 43 patients), sleep (75 times; 39 patients), and tingling hands/feet (68 times; 33 patients).

CONCLUSIONS: MDS patients experience frequent and substantial distress yet referrals to counseling and use of palliative care are rare. These findings point to unmet palliative care needs in MDS.