Endocrine Abstracts

Introduction: Patients with acromegaly have often a challenging path from diagnosis to treatment start and to long-term care. Two separate acromegaly patient advisory panels (one in Europe and one in USA) were conducted with the aim to better learn about their experience and how this could be improved. This format was chosen to allow direct patient to patient interactions and to understand possible unmet needs and opportunities within the acromegaly community. An independent moderator facilitated the meetings and discussions.

Findings: In Europe, 7 patients (2 UK, 2 France, 2 Belgium, 1 Spain; 2M: 5F time since diagnosis 2–17yrs) attended, while in US 8 patients (3M, 5F, time since diagnosis 2–10 yrs.) attended. All patients had prior pituitary surgery and were receiving medical treatment. In both groups, most patients reported that their journey was challenging regardless of symptoms or age at time of diagnosis. For the majority of patients, symptoms went unrecognized for years (range 5–15 years) prior to diagnosis and included: headaches, arthralgia, fatigue, cessation of menses, weight gain and changes in physical appearance (US only). The European patients reported that their Health Care Providers (HCPs) were supportive and were generally satisfied with their care once the diagnosis was made. They recognized and accepted that living with symptoms of acromegaly and ongoing treatment will be ‘part of life’. However, they would like more connections with other acromegaly patients for support. All US patients were concerned about their QoL and life expectancy; 6/8 reported a disconnect from their HCPs as to perceived control and care. The patient advisors proposed several ideas to improve their experience, i.e. HCP education, patient support, ambassador programs, patient panels and personalized approach.

Conclusions: Hearing directly from patients with acromegaly in an advisory panel setting is an innovative way of learning and understanding outside the traditional clinical setting. We identified differences in patient’s experience in Europe vs US especially in acceptance of their disease and perceived care from their endocrinologist. There remains a major need for ongoing education, awareness and resources for patients as well as physicians to benefit their long-term care.