Using Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) to Evaluate Quality of Life for MPN Patients in Qatar
Authors: Yassin Mohamed A. , El-Ayoubi Hanadi Rafii , Al-Dewik Nader 
Published: October 2019

Abstract
Abstract 5069

Background:
Myeloproliferative neoplasms (MPNs), that is, essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF), are a group of MPNs that can lead to significant rates of morbidity and mortality among affected patients. Specifically, patients in the early stages of these illnesses (ET, PV, and early MF) can be predisposed to thrombohemorrhagic events and vascular complications. Long-term complications of MPNs (either primary MF or MF arising from an antecedent ET or PV) can include progressive cytopenias, constitutional symptoms, cachexia and weight loss, moderate to massive splenomegaly, and risk of blastic transformation.
Symptomatic burden in myeloproliferative neoplasms (MPNs) is present in most of MPN patients We sought to use broadly applicable instrument (MPN-SAF) to assess symptoms in myelofibrosis (MF), essential thrombocythemia (ET) and polycythemia vera (PV) among populations of Qatar.

Methods:
Using the MF-SAF as a base instrument, we added several key additional symptoms previously identified as present in all subtypes of MPNs including headaches, concentration, dizziness, extremity tingling, insomnia, sexual problems and mood changes on a 0 (absent) to 10 (worst-imaginable) scale. The MPN-SAF was administered jointly with the EORTC-QLQ-C30 as the co-validation instrument using prospective cohorts in Qatar (Patients referred to National Centre for Cancer Care and Research).

Results:

MPN-SAF Patient data:
123 MPN-SAF surveys were administered (English (45%), Arabic (55%) in 45 ET patients (36. 5 %%), 35 PV patients (28. 5%), and 15 MF patients (12. 2%), 28 MPN unclassified (22. 7%) an average of 7. 8 years (range 0 – 43 years) from their MPN diagnosis. Participants were of, age range (26 – 58 years) and gender (52% female) characteristic of disease. Prior hemorrhage (10%) and thrombosis (25%) were frequent. 78% of patients currently received cytoreductive therapy and 87% received cytoreductive therapy in the past.

Patients and Symptomatic Burden:
19 items assessed in the MPN-SAF demonstrated consistently that the most common symptoms were decreased quality of life (93%), fatigue (84%), insomnia (65%), sad mood (65%), and sexuality problems (62%). The least common symptoms (<50% prevalence) were fevers (15%), weight loss (10%), abdominal pain (23%), cough (34%), headache (50%), and bone pain (48%). Symptoms were most severe in MF, followed by ET, then PV patients. Although symptoms are present in all 3 MPN subgroups, itching is notably more burdensome in PV patients (65%, median score of 2. 8 out of 10). Interestingly, night sweats (present in 58%). The majority found the MPN-SAF easy to understand (92%) and “addressed most of my MPN symptoms” (95%).

Comparison to EORTC-QLQ-C30:
Strong correlations existed between individual items represented on both the MPN-SAF and the EORTC-QLQC30 including pain, fatigue, appetite and insomnia (all p<0. 001). Additionally key symptomatic elements were highly correlated with the EORTC QLQ-C30 functional subscales.

Comparison to Physician Perceptions:
Comparison of the results of the MPN-SAF to enrolling physicians' blinded opinion of patients symptoms (8 assessed - night sweats, fevers, fatigue, weight loss, bone pain, and pruritus) showed excellent correlation with corresponding patients' responses (all p<0. 001).

Serial MPN-SAF Results:
Pearson correlations indicate that most MPN-SAF items are well correlated (r >0. 5, p<. 001) upon repeat survey administration. Items characteristic of advanced disease, including weight loss, fever, and cough displayed lower Pearson correlations (r=0. 46, −0. 08, and 0. 38 respectively).

Conclusions:
The MPN-SAF is comprehensive and reliable instrument which is available in multiple languages (including Arabic and English) to evaluate MPN-associated symptoms. The MPN-SAF is recommended as a uniform symptom assessment tool for MPN patient.

Disclosures:
Yassin: Qatar National Research Fund: Patents & Royalties, Research Funding. Off Label Use: use of pegelated interferon alfa 2a in treatment of patients with ET. Rafii El-Ayoubi:Qatar National Research Fund: Patents & Royalties, Research Funding. Al-Dewik:Qatar National Research Fund: Patents & Royalties, Research Funding.