Tan, A.

Abstract Background: Little objective data exists regarding the impact that myeloproliferative disorders (MPDs) (essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis with myeloid metaplasia (MMM)) have on quality of life. Methods: An Internet based survey of MPD patients regarding clinical course, co-morbidities (through the Charlson Co-Morbidity Index), fatigue (through two validated fatigue instruments (FACT-AN and Brief Fatigue Inventory (BFI)), and exercise tolerance (Godin Leisure-Time Questionnaire). Results: Patient Demographics: A total of 830 MPD patients (median age 56; 60.8% male) from a broad geographic distribution (77% USA: 50 states, 30 countries, 5 continents) responded to the survey. Self reported diagnoses were PV (N=272; 33%), ET (N=221; 27%), or MMM (N=329; 40%) for a median of 5 years (range (0–53). Clinical History: 708 patients (87%) had undergone treatment for their MPD (drugs 84.6%, phlebotomy 49.5%, other 16%). A history of thrombotic (n=195, 24%) or hemorrhagic events (N=214; 26%) were frequently reported. Blood tests (available in 597 a median 1.65 months prior to survey) showed 37% were anemic (7% transfusion dependent). Additionally, 347 (44%) had splenomegaly, painful in 21%. Symptoms: Frequent symptoms reported included fatigue (90%), pruritus (57%), night sweats (54%), bone pain (48%), undesired weight loss (15%), and/or fevers (15%). 41% felt restricted in their activities, and 89 (11%) were medically disabled secondary directly to their MPD. 82% of patients felt their fatigue was linked to their MPD. Additionally 69% curtail social activity because of fatigue, and 41% need some degree of assistance with activities of daily living. Charlson co-morbidity index demonstrated 722 (87%) had minimal co-morbidities strengthening the association between fatigue and their MPD. The burden of fatigue decreased from MMM to PV to ET respectively (p=0.0002). Results from both fatigue assessment tools (FACT-AN and BFI) were highly correlated. Fatigue (FACT-AN fatigue subscale) strongly correlated with multiple MPD disease features including: anemia, bone pain, constitutional symptoms, pruritus, splenic pain, hemorrhagic events (all p<0.0001) and thrombosis(p=0.01). Additionally, currently smoking (as opposed to being a prior smoker) was highly associated with increased fatigue (p<0.0001). Interestingly, even in “asymptomatic” patients (those without anemia, splenomegaly, or thrombohemorrhagic complications (n=187)) 73% (n=128; 40% PV, 32% ET, 27% MMM; p=N.S.) described moderate to severe MPD associated fatigue. Reported physical activity was diminished (Godin Leisure Score) between MPD patients and published norms, with 38% describing minimal to no exercise. Overall, 86% stated fatigue was the major obstacle to exercise. Conclusions: Fatigue is an extremely common problem in patients with MPDs despite current therapies, and a minimal burden of co-morbidities in the majority of patients. Fatigue is also common in patients lacking advanced MPD disease features, or thrombohemorrhagic complications. Clearly, direct attempts to improve fatigue (through pharmacologic and non-pharmacologic interventions) are necessary.

18552 Background: We reviewed Palliative Care Consultation Service (PCCS) referrals to attempt to promote earlier referrals, and to improve overall patient care. Methods: Eligibility for PCCS referral is life expectancy of one year or less. Data was collected prospectively on the first 461 referrals (452 individual patients) over the initial 30-month period (January 1, 2003 to July 1, 2005). Additional factors were retrospectively abstracted from documentation. Kaplan-Meier survival analysis was then performed. Results: 452 patients were seen (mean age 71.9 years), and 387 (86%) have died. Median length of inpatient stay was 8 days, with PCCS consultation requested 3 days prior to discharge. 107 patients (24%) died prior to hospital discharge. 345 patients survived to discharge, 236 (68%) died within 3 months, and 262 (76%) died within 6 months. Median survival from consultation to death was 12 days and after hospital discharge was 6 days. Secondary analysis determined that patients with malignancy had longer median survival from discharge to death than those with other diagnoses (11 days versus 3 days, p = 0.025). Median survival was longer with referrals from general surgery and surgical specialties (37 days and 8 days, respectively), compared to hematology-oncology and critical care (2 days and 0 days, respectively). Conclusions: The primary goal of the PCCS is to provide symptom control and maximize quality of life at the end of life. These data suggest palliative care services are unnecessarily delayed until too late. Education is necessary to facilitate earlier PCCS intervention. Survival analysis suggests providers are more likely to consider PCCS involvement in patients with malignancy compared with other diseases. Critical care and hematology-oncology, showed the lowest median survivals. Education efforts must be focused on these areas. Programs are underway to identify eligible patients earlier in their disease process, and educate providers about key end-of-life services provided to patients and families. No significant financial relationships to disclose.