SAT-434 Patient Reported Outcome Data from Acromegaly Patients Treated with Injectable Somatostatin Analogues in Routine Clinical Practice: Preliminary Results

Aims This study seeks to understand patient-reported outcomes by describing the disease burden for US acromegaly patients (pts) treated with long-acting somatostatin analogues (SSA). Methods We undertook a two-staged study in which US acromegaly pts treated within the past year, receiving a stable dose of SSA, completed an online survey focusing on disease characteristics, routine management, symptoms (sxs), adverse drug reactions, treatment satisfaction and general health (Stage 1). Their treating physicians were interviewed (Stage 2) to understand differences in perspective between pts and providers. Preliminary data from Stage 1 were analyzed descriptively. Results 65 pts (75% F; mean(sd) age = 49(12) yrs; mean time since dx = 10(8) yrs; 40% on octreotide; 60% lanreotide; 68% on SSA monotherapy) were enrolled. SSA injections were received either at home (54%) or doctor’s office (46%). 15% of pts self-injected. Most pts (86%) saw their doctor within the last 6 mos. The mean number of doctor visits over the past yr was 3.3(2.5), range: 1-13. 69% of pts reported adequate biochemical control, but only 31% reported adequate symptomatic control. Despite being on stable doses of SSA, pts report headaches (78%), fatigue/weakness (80%), excessive sweating (69%), joint pain (85%), soft tissues swelling (83%), carpal tunnel symptoms (63%), vision problems (54%), snoring (66%), forgetfulness, and short-term memory loss or feeling in a daze (referred to as “acro-fog”) (86%). Most sxs were experienced constantly; however, >20% of pts experienced headaches, excessive sweating, joint pain, and soft tissue swelling at the end of the injection cycle. Pts reported moderate or severe pain at the injection site during the injection (41%), several hours post-injection (40%), and several days post-injection (38%). Pts reported moderate or severe bruising and swelling (33%), moderate or severe nodules (53%) and moderate or severe scar tissue/hardness (53%) at the injection site. 66% of pts experienced GI side effects (66%), lasting on average 11(11) days post injection (range 2-42). Pts were bothered by the amount of time they experienced sxs (100%), by injection site reactions (74%), the need to schedule injections (60%), and travel to receive injections (71%). Mean overall rating of general health on a 0 to 100 scale was 62(19), range: 23-92. However, only 14% of pts were very satisfied, 23% were satisfied, and 26% were somewhat satisfied with their current treatment overall. Conclusions These preliminary findings highlight the importance of collecting patient-reported data. Despite being on a stable dose of an injectable SSA, seeing their physician regularly and reporting adequate biochemical control, US acromegaly pts in routine clinical practice report significant burden of disease including inadequate symptom control and treatment dissatisfaction.