Patient Perspectives on the Impact of Acromegaly: Results from Individual and Group Interviews
Presentation Number: OR32-2
Date of Presentation: June 17th, 2013
Michelle H. Gurel*1, Paul R. Bruening2, Christine Rhodes2 and Kathleen Graham Lomax3
1Massachusetts General Neuroendocrine Center, Boston, MA, 2Nicholas Research Associates Intl, New York, NY, 3Ipsen Biopharmaceuticals, Inc., Basking Ridge, NJ
Background: Acromegaly is a chronic condition resulting from a growth-hormone secreting pituitary tumor that can substantially impact patients’ physical and emotional well-being.
Aim: To understand the impact of acromegaly on disease-related concerns and treatment choices from the patient perspective. The path to diagnosis, current disease management, interactions with the treating health care providers (HCPs), and support networks were also assessed.
Methods: Acromegaly patients were recruited from a patient support group (acromegalycommunity.com). In phase 1, 10 patients participated over 5 days in a moderated online discussion board and answered questions about their disease. Participants’ comments were kept private for 4 days; on day 5, they could react to each other’s comments. In phase 2, a separate 9-patient cohort participated in interviews conducted during a patient conference. Nicholas Research Associates moderated the online discussion and facilitated the in-person interviews. Data were summarized qualitatively by grouping similar answers and quotations.
Results: Nineteen acromegaly patients were recruited (mean age 41 years; 60% women). Patients demonstrated a notable interest in knowledge about their disease and its treatment. They were focused more on quality of life (QOL) than on the long-term results of treatment. Patients expressed a desire to get beyond reminders of their disease. Many reported hesitancy in asking questions or sharing QOL issues with their HCPs, and expressed concern about HCPs who saw them as less than a full person. The patients described long journeys to a correct diagnosis, relief at having a name for their condition, and many shared a sense of shock at needing brain surgery. Many patients felt left out of or unsatisfied by the treatment decision process and motivated to communicate/discuss it with other patients. Patients not connected to a patient support group reported feeling helpless and lonely. Many patients shared a desire to improve general knowledge about acromegaly to spare others their protracted diagnostic period.
Conclusion: Acromegaly can be a life-changing diagnosis with profound, on-going effects on patients’ lives. Patients struggle with many issues they fail to openly share with their HCPs. Better collaboration between patients and care providers, where HCPs treat their patients as people first and diagnoses second, could lead to increased patient satisfaction.
Disclosure: MHG: Medical Advisory Board Member, Ipsen Biopharmaceuticals, Inc.. PRB: Investigator, Ipsen Biopharmaceuticals, Inc.. CR: Investigator, Ipsen Biopharmaceuticals, Inc.. KGL: Employee, Ipsen Biopharmaceuticals, Inc..