Patient reported outcomes and treatment satisfaction in patients with cushing syndrome

• Published in: Endocrine 2023-01, Vol.79 (1), p.161-170
• Main Authors: Rakovec, Maureen, Zhu, William, Khalafallah, Adham M., Salvatori, Roberto, Hamrahian, Amir H., Gallia, Gary L., Ishii, Masaru, London, Nyall R., Ramanathan, Murugappan, Rowan, Nicholas R., Mukherjee, Debraj
• Format: Article
• Language: English
• Subjects: Adrenocorticotropic hormone; Adult; Child; Cushing syndrome; Cushing Syndrome - therapy; Demography; Diabetes; Endocrine disorders; Endocrinology; Female; Humanities and Social Sciences; Humans; Internal Medicine; Male; Medicine; Medicine & Public Health; Mental disorders; Middle Aged; multidisciplinary; Nervous system diseases; Original Article; Pain; Patient Reported Outcome Measures; Patient Satisfaction; Patients; Personal Satisfaction; Pituitary; Quality of Life; Science; Sleep disorders; Surveys; Tumors
• ISSN: 1559-0100; 1355-008X; 1559-0100
• DOI: 10.1007/s12020-022-03214-5

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.