Background Cushing's disease (CD) and Cushing's syndrome (CS) are chronic illnesses, characterized by symptoms of prolonged hypercortisolism, which often changes to hypocortisolism after successful treatment. In view of the high disease burden of CD/CS patients and long-term impaired quality of life, the present survey was conducted to gain information about subjective illness distress and patients' specific needs in terms of supportive measures beyond medical interventions. Patients and Methods Cross-sectional questionnaire study including patients with CD treated in 2 German neurosurgical tertiary referral centers and CD/CS patient members of a US-based patient support group completed a survey inquiring about disease burden, coping strategies, and support needs. Additionally, the degree of interest in different offers, e.g., internet-based programs and seminars, was assessed. Results 84 US and 71 German patients answered the questionnaire. Patients in both countries indicated to suffer from Cushing-related symptoms, reduced performance, and psychological problems. 48.8% US patients and 44.4% German patients stated that good medical care and competent doctors helped them the most in coping with the illness. US patients were more interested in support groups (p = 0.035) and in courses on illness coping (p = 0.008) than the German patients, who stated to prefer brochures (p = 0.001). 89.3% of US patients would attend internet-based programs compared to 75.4% of German patients (p = 0.040). There were no differences between groups for the preferred duration of and the willingness to pay for such a program, but US patients would travel longer distances to attend a support meeting (p = 0.027). Conclusion Patients in both countries need skilled physicians and long-term medical care in dealing with the effects of CD/CS, whereas other support needs differ between patients of both countries. The latter implies that not only disease-specific but also culture-specific training programs would need to be considered to satisfy the needs of patients in different countries.
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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.