SUN-LB077 Relationship between Responses from Acromegaly Patients Treated with a Stable Dose of Injectable Somatostatin Analogues in Routine Clinical Practice and Their Endocrinology Health Care Professional Regarding Treatment Outcomes: Preliminary Findings

Aim To understand concordance between outcomes reported by US acromegaly patients (pts) treated with long-acting somatostatin analogues (SSA) and those perceived by their treating endocrinology health care professional (HCP). Methods US acromegaly pts receiving a stable dose of SSA for the past year completed an online survey focusing on disease characteristics; routine management; symptoms (sxs); adverse reactions; general health; and sx interference, treatment satisfaction, bother, and convenience from the Acro-TSQ. Their HCPs were interviewed to understand differences in perspective between pts and providers. Concordance data from the first 30 pt-HCP pairs were analyzed using Cohen’s kappa for nominal data (e.g., present/absent), Cohen’s weighted kappa for ordinal data (e.g., mild/moderate/severe), and intraclass correlation coefficients (ICCs) for continuous data (e.g., ratings from 0-100). Kappa values of <0 represent poor, 0-0.20 slight, 0.21-0.40 fair, 0.41-0.60 moderate, 0.61-0.80 substantial, and 0.81-1.0 almost perfect agreement. ICCs <0.5 represent poor, 0.5-0.74 moderate, 0.75-0.90 good, and >0.90 excellent reliability. Results 30 pts (80% female; mean age 47 + 12 yrs; mean time since diagnosis = 10 + 8 yrs; 77% biochemically well controlled (per HCP ratings); mean IGF-1 = 0.86xULN; 37% on octreotide; 63% lanreotide; 63% on SSA monotherapy) and their HCP (mean practice time = 20 +13 yrs; 63% in academic setting) were enrolled. Pts and HCPs agreed that pts experience numerous acromegaly-related sxs. Concordance for ratings of general sx control was moderate (kappa = .51). Concordance on specific sx severity ratings was poor (kappa range: -0.26 - -0.01) for headaches, joint pain, soft tissue swelling, carpal tunnel syndrome, vision problems, and snoring, or slight (range: 0.14 - 0.16) for fatigue/weakness/feeling tired, excessive sweating and “acro-fog.” Pts rated their sxs more severe than HCPs. Pts and HCPs agreed that some sxs were constant (>40%). Pts reported that up to 33% of sxs occurred at the end of the injection cycle vs. up to 13% for HCPs. Many HCPs were unsure of the temporal pattern. Agreement on Acro-TSQ items varied (e.g., moderate-to-good agreement for sx interference with daily activities, but poor agreement on GI side effect interference with daily activities). Pts and HCPs agreed that injection-related signs and sxs were common. However, concordance on severity ratings was poor (range: -0.007 - 0.003), with pts’ ratings more severe than HCPs. Conclusions Pts and HCPs agreed that, despite being fairly well-controlled biochemically and receiving stable dosing of injectable SSAs, pts experience acromegaly-related sxs. There was a lack of agreement for severity, temporal pattern, and effect on daily life, with pts typically reporting greater severity than their HCP. These findings highlight a significant unmet need in the treatment of acromegaly pts. Unless otherwise noted, all abstracts presented at ENDO are embargoed until the date and time of presentation. For oral presentations, the abstracts are embargoed until the session begins. Abstracts presented at a news conference are embargoed until the date and time of the news conference. The Endocrine Society reserves the right to lift the embargo on specific abstracts that are selected for promotion prior to or during ENDO.