Patient Reported Outcomes Survey in Acromegaly Patients Treated with Parenteral Somatostatin Analogues

Background:Somatostatin analogues are at present the most widely used medical treatment in acromegaly. The available long-acting formulations are administered parenterally (intramuscular or deep subcutaneous injections). This patient-reported outcomes survey was designed to assess for the first time the impact of chronic injections on the well-being of subjects with acromegaly. Methods:The survey was conducted in nine endocrinology centers in Germany, UK and The Netherlands. The questionnaire was developed by leading international endocrinologists and was approved by the local Ethics Committees. It covered aspects of acromegaly symptoms/signs, injection-related manifestations, emotional and daily life impact of injections, treatment satisfaction and unmet medical needs. The questionnaire was administered by trained research nurses in each centre. This observational survey was descriptive in nature and analyses were pre-defined. Results:Of the 301 acromegaly patients invited, 195 (65%) agreed to participate. 112 patients (57%) were on octreotide (Sandostatin LAR®) and 83 (43%) on lanreotide (Somatuline Depot®). The majority of patients (>70%) reported acromegaly symptoms/signs, with fatigue, joint pains, snoring, excessive sweating and headaches being the most frequently described. More than half of the patients reported that their complaints became worse towards the end of the dosing interval and interfered with their daily life. Administration site pain lasting up to a week following injection was the most frequently reported injection-related symptom (70% of patients). Other injection site reactions included nodules (38%), swelling (28%), bruising (16%), scar tissue (8%) and inflammation (7%). Injection burden was remarkably similar between octreotide and lanreotide. Differences included longer duration of pain following octreotide injections (43 vs.27% for days; 18 vs. 12% up to a week), and more frequent skin nodules after lanreotide injections (54 vs. 27%). Only the minority of patients received injections at home (17%) and 5% were self-injecting. Over a third of patients indicated a feeling of loss of independence due to the injections and 16% reported repeated work loss days. Problems with the preparation and administration of the injections were frequently encountered (44%). Despite the physical, emotional and daily life impact of injections, patients were satisfied with their treatment. When asked about potential future treatment modifications that would offer major improvement over current care, the most frequently selected alternatives were “avoiding injections” (44%) and “better symptom control” (41%). Conclusions: The results of this comprehensive observational survey suggest that life-long injections of long-acting somatostatin analogues impact considerably the functioning, well-being and daily lives of patients with acromegaly.