TY - JOUR
T1 - Patient reported outcomes and treatment satisfaction in patients with cushing syndrome
AU - Rakovec, Maureen
AU - Zhu, William
AU - Khalafallah, Adham M.
AU - Salvatori, Roberto
AU - Hamrahian, Amir H.
AU - Gallia, Gary L.
AU - Ishii, Masaru
AU - London, Nyall R.
AU - Ramanathan, Murugappan
AU - Rowan, Nicholas R.
AU - Mukherjee, Debraj
N1 - Funding Information:
The authors would like to thank Leslie Edwin and the Cushing Support and Research Foundation for their contributions toward the design of this survey as well as the 178 patients who completed it. Their willingness to share their experiences living with Cushing syndrome is greatly appreciated.
Publisher Copyright:
© 2022, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.
PY - 2023/1
Y1 - 2023/1
N2 - 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.
AB - 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.
KW - Cushing disease
KW - Cushing syndrome
KW - Patient reported outcomes
KW - Quality of life
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U2 - 10.1007/s12020-022-03214-5
DO - 10.1007/s12020-022-03214-5
M3 - Article
C2 - 36227510
AN - SCOPUS:85139763392
SN - 1355-008X
VL - 79
SP - 161
EP - 170
JO - Endocrine
JF - Endocrine
IS - 1
ER -