Patient perspectives on the impact of acromegaly: results from individual and group interviews

Abstract

PurposeAcromegaly is a chronic condition resulting from a growth hormone-secreting pituitary tumor that can substantially impact patients’ physical and emotional well-being. We sought 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.MethodsAcromegaly patients were recruited primarily from a patient support group (Acromegaly Community). In Phase I, ten patients participated over the course of 5 days in a moderated online discussion board and they answered questions about their disease. In Phase II, a separate nine-patient cohort participated in face-to-face interviews conducted during an acromegaly patient conference. Data were summarized qualitatively by grouping similar answers and quotations.ResultsNineteen acromegaly patients were recruited across the two cohorts, and both groups shared similar concerns. They demonstrated a notable interest in understanding their disease and its treatment. Patients were focused on the impact of the disease on their life, and they expressed a desire to get beyond reminders of their disease. The patients described long journeys to a correct diagnosis and relief at having a name for their condition. Many shared a sense of shock at needing pituitary surgery and felt unsatisfied by the treatment decision process, motivating them to discuss it with other patients. Patients not connected to a patient support group reported feeling helpless and lonely. Most patients shared a desire to improve their general knowledge about acromegaly to spare others their protracted diagnostic period. Patients also reported hesitancy in asking questions or sharing details about the disease’s impact on their lives with their HCPs.ConclusionAcromegaly can be a life-changing diagnosis with profound, ongoing effects on patients’ lives. Patients struggle with many issues they fail to openly share with their HCPs, but may discuss these issues more easily with other acromegaly patients. Better collaboration between patients and care providers could lead to increased patient satisfaction.

Satysfakcja i preferencje pacjentów dotyczące leczenia lanreotydem Autogel w akromegalii

“…Future research should focus on this issue, because the reasons underlying patient unwillingness to self-administer is key to improving treatment outcomes in the long-term. Nowadays, the doctor -patient relationship inclines more toward a balanced partnership and shared decision making: physicians are expected to consider patients' preferences and their influence on adherence to therapy [12,20]. The authors of the aforementioned LEAD study reasoned that patient preference might correlate with improved adherence to treatment.…”

“…Overall patient preference, especially in the case of chronic disorders, is a mandatory component of current models of shared doctor-patient decision making [9]. Despite the known importance of this aspect of patient treatment, very little has been published on this issue in terms of acromegaly [10][11][12].…”

Communication practices and awareness of resources for acromegaly patients among endocrinologists

“…Indeed, offering counseling and informing newly diagnosed patients about the acromegaly community are valued by patients 17. In this study, approximately two thirds of respondents indicated that they discuss a patient’s support structure.…”

“…Establishment of a partnership with health care providers is important to patients,17 and effective communication may help to improve adherence 18. In addition, a number of patient education, support, and financial resources are available for patients which may help to overcome some barriers to adherence 18.…”

Attitudes and preferences in patients with acromegaly on long-term treatment with somatostatin analogues

“…Based on our findings and past reports, we speculate that patient preferences are (impacted) by life situations, expectations and concerns and may not be easily predicted by a simple, easy-to-use formula (17). In other studies, patients with acromegaly report concerns about the medication and with acceptance of the disease and its consequences (18, 19). These patients have also reported unmet needs regarding care, such as insufficient information about the impact of the disease.…”