Endocrine Abstracts (2015) 38 P317 | DOI: 10.1530/endoabs.38.P317

Patient experiences of living with acromegaly in the UK

Antonia Brooke1,4, Jacqui Lyttle2, Lynne Goss1,4, Lou Pobereskin3 & Peninsula Endocrinology Network4

1Royal Devon and Exeter Foundation Trust, Exeter, UK; 2JSL Consulting and Associates Ltd., Devon, UK; 3Derriford Hospital, Plymouth, UK; 4Peninsula Endocrinology Network, Devon and Cornwall, UK.

61 patients (104 invited participants), within 10 years of active treatment for acromegaly, from five hospitals in the UK (one neurosurgical centre) were interviewed to explore the experience of living with acromegaly, access to information, support and their ability to make decisions about their care. Semi-structured interviews by an independent consultant (60–120 min each) included 34 males, 27 females; 25–85 years old; 85% patients had surgery. 56 (92%) experienced a significant delay from symptoms to diagnosis, but prompt effective secondary care treatment. Communication and coordination of care between endocrine and surgical teams was criticised. Patients felt a lack of psychological and emotional support. Those in contact with a ‘specialist’ consultant or an endocrine nurse specialist felt most supported. 85% felt they had access to a consultant who understood the condition. Those without contact with an endocrine nurse specialist felt their care might have been compromised as a result. Patients felt unprepared for the life-long effect of their condition. 36 out of 61 were on additional medical treatment and had issues with the ordering, dispensing or administering of the drug. 75% would be willing to travel anywhere in the UK to receive treatment (25% to next available hospital) if not available locally. Although many felt involved in decision-making, few had been offered choice (but would take advice from their consultant). Whilst 87% felt they understood about their condition now, many felt this took a long time with extensive personal research. 67% had been offered written information, 69% had looked on websites, 61% were aware of patient groups but only 20% had joined or sourced information from one and 15% attended a meeting (despite a desire to help others with acromegaly). This is the largest acromegaly qualitative patient experience study undertaken, reflecting the issues of living with acromegaly.

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