Abstract

Aim To understand how endocrinology health care professionals’ (HCP) perceive their acromegaly patients (pts) treatment outcomes Methods We undertook a two-staged study in which US acromegaly pts on a stable dose of SSAs for the past year completed an online survey. Their treating HCP was interviewed to provide their perception of the individual pt that completed the survey focusing on biochemical control; symptom (sx) control and interference; adverse reactions; general health; and sx interference, treatment satisfaction, bother, and convenience from the Acro-TSQ. (One HCP was a DNP; all others were endocrinologists.) The HCP was requested to have the medical records for that individual pt available during the interview, and completed the questions based on his/her perception of the pt’s outcomes. Preliminary data from the subset of 30 HCPs treating pts that were well-controlled biochemically (IGF-1≤1xULN) of the 39 interviewed were analyzed descriptively. Analyses of concordance between pts and HCPs are reported elsewhere. Results 39 HCPs (mean time in practice = 20 + 12 yrs; 64% in academic setting) were enrolled. Of those, a subset of 30 HCPs (77%) treated pts that were well controlled biochemically. These 30 HCPs reported that pts experienced moderate or severe acromegaly-related sxs, despite being biochemically controlled and receiving a stable dose of SSA. Specifically, HCPs reported that the majority of their pts experienced fatigue/weakness/feeling tired (87%), joint pain (70%), headaches (60%) and soft tissue swelling (43%). Forgetfulness/short-term memory loss/feeling in a daze, referred to as “acro-fog,” was reported by 33% of HCPs. Quite often, the HCP was not able to describe the temporal pattern (constant or at different periods throughout the injection interval) for their pts’ sxs. HCPs reported that only 27% of their pts were symptomatically well controlled. Mean HCPs’ ratings of pts’ general health, on a 0 to 100 scale with 0 = worst and 100 = best health imaginable was 73 + 17 (range = 25-95). When HCPs were asked to provide input on what treatment aspect their pt would like to improve, 50% stated that pts wanted better symptom control. The mean domain score for sx interference with daily life from the Acro-TSQ was 57 + 27, with 0 = most and 100 = least interference. Conclusions This is the first study to assess HCP perceptions of their individual patient’s outcomes. HCPs were aware of the significant sx burden and impact in general health and daily life experienced by their biochemically-controlled pts. The fact that treatment was kept stable, despite having active acromegaly sxs, suggests an unmet need in this population. 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. s 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.

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