title: The Myelofibrosis Symptom Assessment Form (MFSAF): an evidence-based brief inventory to measure quality of life and symptomatic response to treatment in myelofibrosis.
abstract: 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.
authors.affiliation: Mayo Clinic, Rochester, MN, USA. mesa.ruben@mayo.edu
authors.forename: Ruben A
authors.initials: RA
authors.lastname: Mesa
authors.forename: Susan
authors.initials: S
authors.lastname: Schwager
authors.forename: Deepti
authors.initials: D
authors.lastname: Radia
authors.forename: Andrea
authors.initials: A
authors.lastname: Cheville
authors.forename: Kebede
authors.initials: K
authors.lastname: Hussein
authors.forename: Joyce
authors.initials: J
authors.lastname: Niblack
authors.forename: Animesh D
authors.initials: AD
authors.lastname: Pardanani
authors.forename: David P
authors.initials: DP
authors.lastname: Steensma
authors.forename: Mark R
authors.initials: MR
authors.lastname: Litzow
authors.forename: Candido E
authors.initials: CE
authors.lastname: Rivera
authors.forename: John
authors.initials: J
authors.lastname: Camoriano
authors.forename: Srdan
authors.initials: S
authors.lastname: Verstovsek
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Sloan
authors.forename: Claire
authors.initials: C
authors.lastname: Harrison
authors.forename: Hagop
authors.initials: H
authors.lastname: Kantarjian
authors.forename: Ayalew
authors.initials: A
authors.lastname: Tefferi
mesh_terms: D006801:Humans; D055728:Primary Myelofibrosis / Q000503:physiopathology / Q000628:therapy*; D011788:Quality of Life; D011795:Surveys and Questionnaires