The Myelofibrosis Symptom Assessment Form (MFSAF): an evidence-based brief inventory to measure quality of life and symptomatic response to treatment in myelofibrosis.
Quality of life (QoL) in patients with myelofibrosis (MF) is severely compromised by severe constitutional symptoms (i.e. fatigue, night sweats, fever, weight loss), pruritus, and symptoms from frequently massive hepatosplenomegaly. Given that no current instrument of patient reported outcomes (PRO) exists that covers the unique spectrum of symptomatology seen in MF patients, we sought to develop a new PRO instrument for MF patients for use in therapeutic clinical trials. Utilizing data from an international Internet-based survey of 458 patients with MF we created a 20-item instrument (MFSAF: Myelofibrosis Symptom Assessment Form) which measures the symptoms reported by >10% of MF patients and includes a measure of QoL. We subsequently validated the MFSAF in a prospective trial of MF patients involving patient and provider feedback, as well as comparison to other validated instruments used in cancer patients. The MFSAF results were highly correlated with other instruments, judged comprehensive and understandable by patients, and should be considered for evaluation of MF symptoms in therapeutic trials.
Mesa
Ruben A
RA
Mayo Clinic, Rochester, MN, USA. mesa.ruben@mayo.edu
Schwager
Susan
S
Radia
Deepti
D
Cheville
Andrea
A
Hussein
Kebede
K
Niblack
Joyce
J
Pardanani
Animesh D
AD
Steensma
David P
DP
Litzow
Mark R
MR
Rivera
Candido E
CE
Camoriano
John
J
Verstovsek
Srdan
S
Sloan
Jeffrey
J
Harrison
Claire
C
Kantarjian
Hagop
H
Tefferi
Ayalew
A
D006801:Humans; D055728:Primary Myelofibrosis / Q000503:physiopathology / Q000628:therapy*; D011788:Quality of Life; D011795:Surveys and Questionnaires