Maureen Rakovec1, William Zhu1, Adham M Khalafallah2, Roberto Salvatori1,3, Amir H Hamrahian3, Gary L Gallia1, Masaru Ishii4, Nyall R London4, Murugappan Ramanathan4, Nicholas R Rowan4, Debraj Mukherjee5,6. 1. Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, 21287, USA. 2. Department of Neurological Surgery, University of Miami Miller School of Medicine, Miami, FL, 33136, USA. 3. Department of Medicine, Division of Endocrinology, Diabetes, and Metabolism, Johns Hopkins University School of Medicine, Baltimore, MD, 21287, USA. 4. Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, 21287, USA. 5. Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, 21287, USA. dmukher1@jhmi.edu. 6. Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, 21205, USA. dmukher1@jhmi.edu.
Abstract
PURPOSE: Cushing Syndrome (CS) is a rare endocrine disorder associated with physical and mental symptoms that can drastically affect quality of life (QoL). This study characterizes QoL in patients with CS, describes their treatment experiences, and identifies patient subsets associated with decreased QoL or shared impressions of treatment. METHODS: A 136-question survey addressing QoL factors and treatment experiences was completed by adult patients with CS from the Cushing Support and Research Foundation. Patient demographics, tumor characteristics, and treatment information were collected. Bivariate analyses were conducted to determine if patients' symptoms or treatment experiences were significantly associated with demographics or other variables. RESULTS: A total of 178 patients, predominantly female (94%) with mean age 53 years, completed the survey. Anxiety and/or depression (n = 163, 94%), loss of physical strength (n = 164, 93%), loneliness (n = 156, 90%), fatigue from treatment (n = 142, 89%), memory loss (n = 153, 88%), insomnia (n = 144, 83%), and pain (n = 141, 83%) were symptoms most commonly experienced by respondents. Patients experiencing delay of diagnosis >10 years were more likely to have suicidal thoughts (p = 0.002). Younger patients were more likely to express concerns about hair loss (p = 0.007), loneliness (p = 0.025), pain (p = 0.004), or the impact of CS on their marriage (p = 0.039) or children (p = 0.024). CONCLUSION: This survey demonstrates CS impacts patients across many dimensions, emphasizing the need for holistic support. We identified patient subsets in which QoL may be improved with additional patient resources or provider attention.
PURPOSE: Cushing Syndrome (CS) is a rare endocrine disorder associated with physical and mental symptoms that can drastically affect quality of life (QoL). This study characterizes QoL in patients with CS, describes their treatment experiences, and identifies patient subsets associated with decreased QoL or shared impressions of treatment. METHODS: A 136-question survey addressing QoL factors and treatment experiences was completed by adult patients with CS from the Cushing Support and Research Foundation. Patient demographics, tumor characteristics, and treatment information were collected. Bivariate analyses were conducted to determine if patients' symptoms or treatment experiences were significantly associated with demographics or other variables. RESULTS: A total of 178 patients, predominantly female (94%) with mean age 53 years, completed the survey. Anxiety and/or depression (n = 163, 94%), loss of physical strength (n = 164, 93%), loneliness (n = 156, 90%), fatigue from treatment (n = 142, 89%), memory loss (n = 153, 88%), insomnia (n = 144, 83%), and pain (n = 141, 83%) were symptoms most commonly experienced by respondents. Patients experiencing delay of diagnosis >10 years were more likely to have suicidal thoughts (p = 0.002). Younger patients were more likely to express concerns about hair loss (p = 0.007), loneliness (p = 0.025), pain (p = 0.004), or the impact of CS on their marriage (p = 0.039) or children (p = 0.024). CONCLUSION: This survey demonstrates CS impacts patients across many dimensions, emphasizing the need for holistic support. We identified patient subsets in which QoL may be improved with additional patient resources or provider attention.
Authors: S M Webb; X Badia; M J Barahona; A Colao; C J Strasburger; A Tabarin; M O van Aken; R Pivonello; G Stalla; S W J Lamberts; J E Glusman Journal: Eur J Endocrinol Date: 2008-05 Impact factor: 6.664
Authors: Rosario Pivonello; Andrea M Isidori; Maria Cristina De Martino; John Newell-Price; Beverly M K Biller; Annamaria Colao Journal: Lancet Diabetes Endocrinol Date: 2016-05-10 Impact factor: 32.069