Abstract：
BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness characterized by marked functional limitations and fatigue. Electronic health records can be used to estimate incidence of ME/CFS but may have limitations.
METHODS: The authors used International Classification of Diseases (ICD) diagnosis codes to identify all presumptive cases of ME/CFS among 9- to 39-year-olds from 2006 to 2017. The authors randomly selected 200 cases for medical record review to classify cases as confirmed, probable, or possible, based on which and how many current clinical criteria they met, and to further characterize their illness. The authors calculated crude annual rates of ME/CFS coding stratified by age and sex using only those ICD codes that had identified confirmed, probable, or possible ME/CFS cases in the medical record review.
RESULTS: The authors identified 522 individuals with presumptive ME/CFS based on having ≥ 1 ICD codes for ME/CFS in their electronic medical record. Of the 200 cases selected, records were available and reviewed for 188. Thirty (15%) were confirmed or probable ME/CFS cases, 39 (19%) were possible cases, 119 (60%) were not cases, and 12 (6%) had no medical record available. Confirmed/probable cases commonly had chronic pain (80%) or anxiety/depression (70%), and only 13 (43%) had completed a sleep study. Overall, 37 per 100,000 had ICD codes that identified confirmed, probable, or possible ME/CFS. Rates increased between 2006 and 2017, with the largest absolute increase among those 30-39 years old.
CONCLUSIONS: Using ICD diagnosis codes alone inaccurately estimates ME/CFS incidence.
METHODS: The authors used International Classification of Diseases (ICD) diagnosis codes to identify all presumptive cases of ME/CFS among 9- to 39-year-olds from 2006 to 2017. The authors randomly selected 200 cases for medical record review to classify cases as confirmed, probable, or possible, based on which and how many current clinical criteria they met, and to further characterize their illness. The authors calculated crude annual rates of ME/CFS coding stratified by age and sex using only those ICD codes that had identified confirmed, probable, or possible ME/CFS cases in the medical record review.
RESULTS: The authors identified 522 individuals with presumptive ME/CFS based on having ≥ 1 ICD codes for ME/CFS in their electronic medical record. Of the 200 cases selected, records were available and reviewed for 188. Thirty (15%) were confirmed or probable ME/CFS cases, 39 (19%) were possible cases, 119 (60%) were not cases, and 12 (6%) had no medical record available. Confirmed/probable cases commonly had chronic pain (80%) or anxiety/depression (70%), and only 13 (43%) had completed a sleep study. Overall, 37 per 100,000 had ICD codes that identified confirmed, probable, or possible ME/CFS. Rates increased between 2006 and 2017, with the largest absolute increase among those 30-39 years old.
CONCLUSIONS: Using ICD diagnosis codes alone inaccurately estimates ME/CFS incidence.
摘要：
背景：肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种慢性疾病，其特征是明显的功能受限和疲劳。电子健康记录可用于估计ME/CFS的发生率，但可能有局限性。
方法：作者使用国际疾病分类（ICD）诊断代码来确定2006年至2017年9至39岁人群中所有ME/CFS的推定病例。作者随机抽取200例病例进行病历复查,将病例分类为确诊,可能,或者可能，基于他们满足了哪些和多少当前的临床标准，并进一步描述他们的病情。作者计算了按年龄和性别分层的ME/CFS编码的粗年率，仅使用已确定的ICD编码，可能,或病历审查中可能的ME/CFS病例。
结果：作者根据电子病历中ME/CFS的ICD代码≥1，确定了522名具有推定ME/CFS的个体。在选定的200个案例中，提供了188份记录并进行了审查.30例(15%)是确诊或可能的ME/CFS病例，39例（19%）是可能的病例，119（60％）不是病例，12人(6%)无医疗记录.确诊/可能病例通常有慢性疼痛（80％）或焦虑/抑郁（70％），只有13人（43%）完成了睡眠研究。总的来说,每100,000人中有37人有确认的ICD代码，可能,或可能的ME/CFS。2006年至2017年期间，比率上升，其中30-39岁人群的绝对增幅最大。
结论：单独使用ICD诊断代码无法准确估计ME/CFS发病率。
方法：作者使用国际疾病分类（ICD）诊断代码来确定2006年至2017年9至39岁人群中所有ME/CFS的推定病例。作者随机抽取200例病例进行病历复查,将病例分类为确诊,可能,或者可能，基于他们满足了哪些和多少当前的临床标准，并进一步描述他们的病情。作者计算了按年龄和性别分层的ME/CFS编码的粗年率，仅使用已确定的ICD编码，可能,或病历审查中可能的ME/CFS病例。
结果：作者根据电子病历中ME/CFS的ICD代码≥1，确定了522名具有推定ME/CFS的个体。在选定的200个案例中，提供了188份记录并进行了审查.30例(15%)是确诊或可能的ME/CFS病例，39例（19%）是可能的病例，119（60％）不是病例，12人(6%)无医疗记录.确诊/可能病例通常有慢性疼痛（80％）或焦虑/抑郁（70％），只有13人（43%）完成了睡眠研究。总的来说,每100,000人中有37人有确认的ICD代码，可能,或可能的ME/CFS。2006年至2017年期间，比率上升，其中30-39岁人群的绝对增幅最大。
结论：单独使用ICD诊断代码无法准确估计ME/CFS发病率。
