Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study

BackgroundInsidious-onset acromegaly may easily be overlooked by non-specialists of acromegaly and cause diagnostic delay. This study aims to examine the association between diagnostic delay and advice from doctors before any confirmed diagnosis and subsequent comorbidities, and elicit patient-perce...

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Main Authors: Kailu Wang, Xiaopeng Guo, Siyue Yu, Lu Gao, Zihao Wang, Huijuan Zhu, Bing Xing, Shuyang Zhang, Dong Dong
Format: Article
Language:English
Published: Frontiers Media S.A. 2021-10-01
Series:Frontiers in Endocrinology
Subjects:
Online Access:https://www.frontiersin.org/articles/10.3389/fendo.2021.704496/full
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author Kailu Wang
Xiaopeng Guo
Xiaopeng Guo
Xiaopeng Guo
Xiaopeng Guo
Siyue Yu
Lu Gao
Lu Gao
Lu Gao
Lu Gao
Zihao Wang
Zihao Wang
Zihao Wang
Zihao Wang
Huijuan Zhu
Huijuan Zhu
Huijuan Zhu
Huijuan Zhu
Bing Xing
Bing Xing
Bing Xing
Bing Xing
Bing Xing
Shuyang Zhang
Shuyang Zhang
Dong Dong
Dong Dong
author_facet Kailu Wang
Xiaopeng Guo
Xiaopeng Guo
Xiaopeng Guo
Xiaopeng Guo
Siyue Yu
Lu Gao
Lu Gao
Lu Gao
Lu Gao
Zihao Wang
Zihao Wang
Zihao Wang
Zihao Wang
Huijuan Zhu
Huijuan Zhu
Huijuan Zhu
Huijuan Zhu
Bing Xing
Bing Xing
Bing Xing
Bing Xing
Bing Xing
Shuyang Zhang
Shuyang Zhang
Dong Dong
Dong Dong
author_sort Kailu Wang
collection DOAJ
description BackgroundInsidious-onset acromegaly may easily be overlooked by non-specialists of acromegaly and cause diagnostic delay. This study aims to examine the association between diagnostic delay and advice from doctors before any confirmed diagnosis and subsequent comorbidities, and elicit patient-perceived reasons for misdiagnoses.MethodsAn online nationwide cross-sectional study was conducted through China Acromegaly Patient Association. Growth Hormone (GH) and Insulin-like Growth Factor 1 (IGF-1) levels at diagnosis and cancerous, endocrine-metabolic, musculoskeletal, cardiovascular, respiratory, and psychiatric comorbidities were reported by patients. The association between diagnostic delay and pre-diagnostic advice from doctors as well as subsequent comorbidities after diagnosis were examined.ResultsIn total, 447 valid responses were collected. Overall, 58.8% patients experienced misdiagnoses, and 22.6% had diagnostic delay. Before arriving at any diagnosis, patients without treatment (adjusted odds ratio [AOR]: 3.66, 95% confidence interval [CI]: 1.30-10.33) or receiving treatment to symptoms only (AOR: 7.05, 95%CI: 4.09-12.17) had greater chance of being misdiagnosed, and hence had diagnostic delay. Patients believed insufficient specialists, limited awareness of acromegaly of non-specialists and poor doctor-patient communications were major reasons of misdiagnosis. Diagnostic delay were associated with higher GH level at diagnosis and endocrine-metabolic, musculoskeletal and cardiovascular comorbidities (all P<0.05).ConclusionsSuboptimal pre-diagnostic advice for patients, reflecting limited awareness of acromegaly among non-specialists, may delay the diagnosis and increase comorbidities. Feedbacks on the patients’ final diagnosis from specialists to non-specialists should be considered, and doctor-patient communication and clinical decision-making process should be improved. Comorbidities should be screened and monitored particularly for patients with diagnostic delay.
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spelling doaj.art-3119671462624832b28e289ec8f5a86d2022-12-21T19:09:14ZengFrontiers Media S.A.Frontiers in Endocrinology1664-23922021-10-011210.3389/fendo.2021.704496704496Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional StudyKailu Wang0Xiaopeng Guo1Xiaopeng Guo2Xiaopeng Guo3Xiaopeng Guo4Siyue Yu5Lu Gao6Lu Gao7Lu Gao8Lu Gao9Zihao Wang10Zihao Wang11Zihao Wang12Zihao Wang13Huijuan Zhu14Huijuan Zhu15Huijuan Zhu16Huijuan Zhu17Bing Xing18Bing Xing19Bing Xing20Bing Xing21Bing Xing22Shuyang Zhang23Shuyang Zhang24Dong Dong25Dong Dong26The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, Hong Kong, SAR ChinaDepartment of Neurosurgery, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaKey Laboratory of Endocrinology of Ministry of Health, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaChina Pituitary Disease Registry Center, Beijing, ChinaChina Pituitary Adenoma Specialist Council, Beijing, ChinaThe Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, Hong Kong, SAR ChinaDepartment of Neurosurgery, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaKey Laboratory of Endocrinology of Ministry of Health, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaChina Pituitary Disease Registry Center, Beijing, ChinaChina Pituitary Adenoma Specialist Council, Beijing, ChinaDepartment of Neurosurgery, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaKey Laboratory of Endocrinology of Ministry of Health, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaChina Pituitary Disease Registry Center, Beijing, ChinaChina Pituitary Adenoma Specialist Council, Beijing, ChinaKey Laboratory of Endocrinology of Ministry of Health, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaChina Pituitary Disease Registry Center, Beijing, ChinaChina Pituitary Adenoma Specialist Council, Beijing, ChinaDepartment of Endocrinology, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaDepartment of Neurosurgery, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaKey Laboratory of Endocrinology of Ministry of Health, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaChina Pituitary Disease Registry Center, Beijing, ChinaChina Pituitary Adenoma Specialist Council, Beijing, ChinaChina Alliance of Rare Diseases, Beijing, ChinaChina Alliance of Rare Diseases, Beijing, ChinaDepartment of Cardiology, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, ChinaThe Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, Hong Kong, SAR ChinaShenzhen Research Institute, The Chinese University of Hong Kong, Shenzhen, ChinaBackgroundInsidious-onset acromegaly may easily be overlooked by non-specialists of acromegaly and cause diagnostic delay. This study aims to examine the association between diagnostic delay and advice from doctors before any confirmed diagnosis and subsequent comorbidities, and elicit patient-perceived reasons for misdiagnoses.MethodsAn online nationwide cross-sectional study was conducted through China Acromegaly Patient Association. Growth Hormone (GH) and Insulin-like Growth Factor 1 (IGF-1) levels at diagnosis and cancerous, endocrine-metabolic, musculoskeletal, cardiovascular, respiratory, and psychiatric comorbidities were reported by patients. The association between diagnostic delay and pre-diagnostic advice from doctors as well as subsequent comorbidities after diagnosis were examined.ResultsIn total, 447 valid responses were collected. Overall, 58.8% patients experienced misdiagnoses, and 22.6% had diagnostic delay. Before arriving at any diagnosis, patients without treatment (adjusted odds ratio [AOR]: 3.66, 95% confidence interval [CI]: 1.30-10.33) or receiving treatment to symptoms only (AOR: 7.05, 95%CI: 4.09-12.17) had greater chance of being misdiagnosed, and hence had diagnostic delay. Patients believed insufficient specialists, limited awareness of acromegaly of non-specialists and poor doctor-patient communications were major reasons of misdiagnosis. Diagnostic delay were associated with higher GH level at diagnosis and endocrine-metabolic, musculoskeletal and cardiovascular comorbidities (all P<0.05).ConclusionsSuboptimal pre-diagnostic advice for patients, reflecting limited awareness of acromegaly among non-specialists, may delay the diagnosis and increase comorbidities. Feedbacks on the patients’ final diagnosis from specialists to non-specialists should be considered, and doctor-patient communication and clinical decision-making process should be improved. Comorbidities should be screened and monitored particularly for patients with diagnostic delay.https://www.frontiersin.org/articles/10.3389/fendo.2021.704496/fullacromegalydiagnostic delaymisdiagnosispre-diagnostic advicepatient experiencecomorbidity
spellingShingle Kailu Wang
Xiaopeng Guo
Xiaopeng Guo
Xiaopeng Guo
Xiaopeng Guo
Siyue Yu
Lu Gao
Lu Gao
Lu Gao
Lu Gao
Zihao Wang
Zihao Wang
Zihao Wang
Zihao Wang
Huijuan Zhu
Huijuan Zhu
Huijuan Zhu
Huijuan Zhu
Bing Xing
Bing Xing
Bing Xing
Bing Xing
Bing Xing
Shuyang Zhang
Shuyang Zhang
Dong Dong
Dong Dong
Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study
Frontiers in Endocrinology
acromegaly
diagnostic delay
misdiagnosis
pre-diagnostic advice
patient experience
comorbidity
title Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study
title_full Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study
title_fullStr Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study
title_full_unstemmed Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study
title_short Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study
title_sort patient identified problems and influences associated with diagnostic delay of acromegaly a nationwide cross sectional study
topic acromegaly
diagnostic delay
misdiagnosis
pre-diagnostic advice
patient experience
comorbidity
url https://www.frontiersin.org/articles/10.3389/fendo.2021.704496/full
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