PMID- 33083541
OWN - NLM
STAT- PubMed-not-MEDLINE
LR  - 20240329
IS  - 2379-6146 (Electronic)
IS  - 2379-6146 (Linking)
VI  - 4
IP  - 4
DP  - 2020 Oct
TI  - Fitness for purpose of routinely recorded health data to identify patients with 
      complex diseases: The case of Sjogren's syndrome.
PG  - e10242
LID - 10.1002/lrh2.10242 [doi]
LID - e10242
AB  - BACKGROUND: This study is part of the EU-funded project HarmonicSS, aimed at 
      improving the treatment and diagnosis of primary Sjogren's syndrome (pSS). pSS is 
      an underdiagnosed, long-term autoimmune disease that affects particularly 
      salivary and lachrymal glands. OBJECTIVES: We assessed the usability of routinely 
      recorded primary care and hospital claims data for the identification and 
      validation of patients with complex diseases such as pSS. METHODS: pSS patients 
      were identified in primary care by translating the formal inclusion and exclusion 
      criteria for pSS into a patient selection algorithm using data from Nivel Primary 
      Care Database (PCD), covering 10% of the Dutch population between 2006 and 2017. 
      As part of a validation exercise, the pSS patients found by the algorithm were 
      compared to Diagnosis Related Groups (DRG) recorded in the national hospital 
      insurance claims database (DIS) between 2013 and 2017. RESULTS: International 
      Classification of Primary Care (ICPC) coded general practitioner (GP) contacts 
      combined with the mention of "Sjogren" in the disease episode titles, were found 
      to best translate the formal classification criteria to a selection algorithm for 
      pSS. A total of 1462 possible pSS patients were identified in primary care (mean 
      prevalence 0.7 per thousand, against 0.61 per thousand reported globally). The DIS contained 208 545 
      patients with a Sjogren related DRG or ICD10 code (prevalence 2017: 2.73 per thousand). A 
      total of 2 577 577 patients from Nivel PCD were linked to the DIS database. A 
      total of 716 of the linked pSS patients (55.3%) were confirmed based on the DIS. 
      CONCLUSION: Our study finds that GP electronic health records (EHRs) lack the 
      granular information needed to apply the formal diagnostic criteria for pSS. The 
      developed algorithm resulted in a patient selection that approximates the 
      expected prevalence and characteristics, although only slightly over half of the 
      patients were confirmed using the DIS. Without more detailed diagnostic 
      information, the fitness for purpose of routine EHR data for patient 
      identification and validation could not be determined.
CI  - (c) 2020 The Authors. Learning Health Systems published by Wiley Periodicals LLC on 
      behalf of the University of Michigan.
FAU - Wiegersma, Sytske
AU  - Wiegersma S
AD  - Netherlands Institute for Health Services Research (NIVEL) Utrecht The 
      Netherlands.
FAU - Flinterman, Linda E
AU  - Flinterman LE
AD  - Netherlands Institute for Health Services Research (NIVEL) Utrecht The 
      Netherlands.
FAU - Seghieri, Chiara
AU  - Seghieri C
AD  - Institute of Management Sant'Anna School of Advanced Studies Pisa Italy.
FAU - Baldini, Chiara
AU  - Baldini C
AD  - Department of Clinical and Experimental Medicine University of Pisa Pisa Italy.
FAU - Paget, John
AU  - Paget J
AD  - Netherlands Institute for Health Services Research (NIVEL) Utrecht The 
      Netherlands.
FAU - Barrio Cortes, Jaime
AU  - Barrio Cortes J
AD  - Faculty of Education and Health University Camilo Jose Cela Madrid Spain.
FAU - Verheij, Robert A
AU  - Verheij RA
AD  - Netherlands Institute for Health Services Research (NIVEL) Utrecht The 
      Netherlands.
AD  - Tilburg School of Social and Behavioral Sciences Tilburg University Tilburg The 
      Netherlands.
LA  - eng
PT  - Journal Article
DEP - 20200908
PL  - United States
TA  - Learn Health Syst
JT  - Learning health systems
JID - 101708071
PMC - PMC7556429
OTO - NOTNLM
OT  - data linkage
OT  - electronic health record
OT  - patient selection algorithm
OT  - primary Sjogren's syndrome
OT  - primary care
OT  - secondary care
COIS- The authors do not have any conflicts of interest to declare.
EDAT- 2020/10/22 06:00
MHDA- 2020/10/22 06:01
PMCR- 2020/09/08
CRDT- 2020/10/21 06:04
PHST- 2020/02/15 00:00 [received]
PHST- 2020/06/30 00:00 [revised]
PHST- 2020/07/15 00:00 [accepted]
PHST- 2020/10/21 06:04 [entrez]
PHST- 2020/10/22 06:00 [pubmed]
PHST- 2020/10/22 06:01 [medline]
PHST- 2020/09/08 00:00 [pmc-release]
AID - LRH210242 [pii]
AID - 10.1002/lrh2.10242 [doi]
PST - epublish
SO  - Learn Health Syst. 2020 Sep 8;4(4):e10242. doi: 10.1002/lrh2.10242. eCollection 
      2020 Oct.