Epidemiology and Health

Data Profile

The National Hospice and Palliative Care registry in Korea: Kyuwoong Kim, Bohyun Park, Bonju Gu, Eun Jeong Nam, Sue Hyun Kye, Jin Young Choi; Epidemiol Health. 2022;44:e2022079. Published online September 21, 2022; DOI: https://doi.org/10.4178/epih.e2022079

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Abstract

The National Hospice and Palliative Care (NHPC) registry is a nationwide database in Korea that systematically collects information on terminally ill cancer patients receiving inpatient hospice care. From 2018 to 2020, a total of 47,911 patients were enrolled in the NHPC registry from hospitals providing inpatient hospice care. The NHPC database mainly contains the socio-demographic and clinical information of the registered patients. Among these patients, approximately 75% were 60 years or older, and the ratio of males to females was 1:1.41. Lung, liver, colorectal, pancreatic, and gastric cancer made up nearly 90% of the cancer sites among the registered patients. Upon their initial admission to the hospice ward, around 80% of the patients were aware of their terminal illness. About half of the patients had mild pain at the time of the initial admission to the hospice ward, and the duration of hospice care was 14 days (interquartile range, 6-30) in 2019 and 2020. The NHPC registry aims to provide national statistics on inpatient hospice care to assist health policy-making.

Summary

Korean summary
본 논문에서 소개된 국가 호스피스·완화의료 등록시스템은 국내 입원형 호스피스 환자의 인구사회학적 특성과 임상정보에 관한 정보를 포함하고 있습니다. 등록시스템은 국내 호스피스·완화의료 현황에 대한 국가통계 생산, 근거기반 호스피스·완화의료 정책 개발 및 연구 등에 활용될 수 있습니다.

Key Message
The National Hospice and Palliative Care registry contains information on demographics and clinical information of patients receiving inpatient hospice care in Korea. Along with its primary purpose to provide national statistics on the current status of hospice care in the country, the registry could also be used for evidence-based health policy or research pertaining to hospice in Korea.

Citations

Citations to this article as recorded by

For the Universal Right to Access Quality End-of-Life Care in Korea: Broadening Our Perspective After the 2018 Life-Sustaining Treatment Decisions Act
Hye Yoon Park, Min Sun Kim, Shin Hye Yoo, Jung Lee, In Gyu Song, So Yeon Jeon, Eun Kyung Choi
Journal of Korean Medical Science.2024;[Epub] CrossRef
Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study
Il Yun, Eun-Cheol Park, Chung Mo Nam, Jaeyong Shin, Suk-Yong Jang, Sung-In Jang
BMC Palliative Care.2024;[Epub] CrossRef
Inpatient Hospice Care in Korea during the COVID-19 Pandemic: A Preliminary Study
Youn Seon Choi, Sun Wook Hwang, In Cheol Hwang
Journal of Hospice and Palliative Care.2024; 27(2): 82. CrossRef
Decreased aggressive care at the end of life among advanced cancer patients in the Republic of Korea: a nationwide study from 2012 to 2018
Sara Kwon, Kyuwoong Kim, Bohyun Park, So-Jung Park, Hyun Jung Jho, Jin Young Choi
BMC Palliative Care.2024;[Epub] CrossRef
Advance Care Planning in South Korea
Yu Jung Kim, Sun-Hyun Kim
Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen.2023; 180: 68. CrossRef
Changes in the Place of Death of Patients With Cancer After the Introduction of Insurance-Covered, Home-Based Hospice Care in Korea
Il Yun, Sung-In Jang, Eun-Cheol Park, Suk-Yong Jang
JAMA Network Open.2023; 6(11): e2341422. CrossRef
Application of Acceptance and Commitment Therapy (ACT) in Hospice and Palliative Care Settings
So-Young Park
The Journal of Hospice and Palliative Care.2023; 26(3): 140. CrossRef

Review

Registry-based stroke research in Taiwan: past and future: Cheng-Yang Hsieh, Darren Philbert Wu, Sheng-Feng Sung; Epidemiol Health. 2018;40:e2018004. Published online February 4, 2018; DOI: https://doi.org/10.4178/epih.e2018004

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19 Web of Science
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Abstract PDF

Abstract

Stroke registries are observational databases focusing on the clinical information and outcomes of stroke patients. They play an important role in the cycle of quality improvement. Registry data are collected from real-world experiences of stroke care and are suitable for measuring quality of care. By exposing inadequacies in performance measures of stroke care, research from stroke registries has changed how we manage stroke patients in Taiwan. With the success of various quality improvement campaigns, mortality from stroke and recurrence of stroke have decreased in the past decade. After the implementation of a nationwide stroke registry, researchers have been creatively expanding how they use and collect registry data for research. Through the use of the nationwide stroke registry as a common data model, researchers from many hospitals have built their own stroke registries with extended data elements to meet the needs of research. In collaboration with information technology professionals, stroke registry systems have changed from web-based, manual submission systems to automated fill-in systems in some hospitals. Furthermore, record linkage between stroke registries and administrative claims databases or other existing databases has widened the utility of registry data in research. Using stroke registry data as the reference standard, researchers have validated several algorithms for ascertaining the diagnosis of stroke and its risk factors from claims data, and have also developed a claims-based index to estimate stroke severity. By making better use of registry data, we believe that we will provide better care to patients with stroke.

Summary

Citations

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Medical & Biological Engineering & Computing.2024; 62(8): 2343. CrossRef
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Ryu Matsuo
Journal of Atherosclerosis and Thrombosis.2023; 30(9): 1095. CrossRef
TREAT‐AIS: A Multicenter National Registry
Sung‐Chun Tang, Yi‐Chen Hsieh, Chun‐Jen Lin, Yu‐Wei Chen, Kuan‐Hung Lin, Pi‐Shan Sung, Meng‐Tsang Hsieh, Chih‐Wei Tang, Hai‐Jui Chu, Kun‐Chang Tsai, Chao‐Liang Chou, Cheng‐Yu Wei, Shang‐Yih Yen, Po‐Lin Chen, Hsu‐Ling Yeh, Lung Chan, Sheng‐Feng Sung, Hon‐M
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Chun-Min Wang, Yu-Ming Chang, Pi-Shan Sung, Chih-Hung Chen
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The Riga East University Hospital Stroke Registry—An Analysis of 4915 Consecutive Patients with Acute Stroke
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STAIR X
David S. Liebeskind, Colin P. Derdeyn, Lawrence R. Wechsler, Greg Albers, Eric P. Ankerud, Johannes Boltze, Joseph Broderick, Bruce C.V. Campbell, Mitchell S.V. Elkind, Derick En’Wezoh, Anthony J. Furlan, Philip B. Gorelick, James Grotta, David Hess, Anee
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Original Article

Annual average cancer incidence and trend of cancer incidence in Daegu for 5 years, 1997~2001.: Byung Yeol Chun, Jin Hoon Yang, Jung Hup Song, Ji Seun Lim; Korean J Epidemiol. 2007;29(1):59-69.

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Abstract PDF: Abstract
PURPOSE
This study is conducted to identify the annual average cancer incidence and the trend of cancer incidence in Daegu during the 5-year period from 1997 to 2001.
METHOD
Data on newly diagnosed cancer patients from 1997 to 2001 were collected with a standard registration form. Medical record reviewers visited hospitals if necessary, to detect missing cancer patients.
RESULTS
The annual average overall number of cancer patient was 4,606 (male 2,529 and female 2,077). The crude average annual incidence of cancer in male were 211.8 (ASR 251.4) and 169.8 (ASR 151.3) in female. Five major cancers in male were stomach (ASR 60.3), bronchus and lung (ASR 44.8), liver and intrahepatic bile ducts (ASR 40.7), rectum (ASR 11.2), and colon (ASR 10.8). However, in women, those were stomach (ASR 25.3), breast (ASR 19.8), cervix (ASR 14.9), bronchus and lung (ASR 12.7), liver and intrahepatic bile ducts (ASR 11.1). Increases in incidence were found for colon cancer for both sexes, rectal cancer for males, and lung and breast cancer for females. Decreases were shown for liver cancer for both sexes and stomach and cervical cancer for females.
CONCLUSIONS
Primary prevention of cancer based on results of this study remains important.; Summary

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