MON-452 Development of Concepts for Improved Patient Care: What Do Patients with Acromegaly Expect from Their Caregivers?

Abstract

Introduction: Traditional patient-clinician relationships are paternalistic in the sense that the clinician makes the decision of what is best for the patient. However, modern medicine requires a paradigm shift away from this type of interaction and a drive towards more patient-centered care, implying that physicians must gain a broader knowledge about the patients’ view of their illness. This also hold true for neuroendocrine disorders such as acromegaly. Here, we present the results of a focus group with acromegaly patients on their perceptions and needs concerning their illness. Patients and method: As a pre-project for a larger questionnaire study, a focus group research was conducted. Six patients with acromegaly who could not be cured by neurosurgery but required further therapies such as medical treatment and/or radiotherapy took part in this group, which was moderated by an external medical communication company (SDMed. Cologne, Germany). The group discussion focused on topics such as impact of the illness on everyday life and support needs. Results: The patients reported that the diagnosis “acromegaly” was experienced as a nightmare but also a relief after a long medical odyssey. The management of numerous doctors’ visits, procuring and applying medication (“illness as a part-time job”), the irreversible bodily changes due to acromegaly (“buying shoes ruins my day”, “I cannot look at photographs of myself”, “buying work gloves is simply impossible”), treating physicians’ lack of knowledge about the disease, but also a lack of reliable information for patients and relatives, maintaining the cold chain for medication when travelling and fears of the results of medical investigations were named as chronic stressors of living with acromegaly. Patients’ coping strategies included family support, sport, activities to balance out work and everyday life, and humor. The participants wished for a more interdisciplinary treatment of their illness, medical rehabilitation services with special knowledge on acromegaly-related morbidity, a stable contact person in the medical process and reliable information material about their illness for themselves and their relatives. Conclusion: Next to traditional medical care, a successful management of acromegaly requires knowledge about the everyday illness-related stressors and patients’ desires for successful treatment. Placing the focus solely on normalization of IGF-I levels does not seem to be adequate. This study was sponsored under a grant from Ipsen. Ipsen had no input into the study design, analysis or interpretation of results.