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Understanding remission of long-term conditions through electronic health records: a scoping review

Understanding remission of long-term conditions through electronic health records: a scoping review
Understanding remission of long-term conditions through electronic health records: a scoping review
Background: multiple long-term conditions (MLTCs) require complex and prolonged treatment regimens. Remission in long-term conditions (LTCs) is important for understanding disease progression and evaluating treatment effectiveness. Electronic health records (EHRs) are increasingly used to monitor clinical outcomes, but how remission is defined within EHRs remains unclear.

Objective: this study aimed to summarize and collate the previous literature on how remission of LTCs has been defined in EHRs.

Methods: systematic electronic searches were performed on OVID MEDLINE, Embase, CINAHL EBSCO, the Cochrane Library, and the Bielefeld Academic Search Engine for eligible studies published from inception to November 27, 2025. Quantitative studies, published in any language, on adult populations, and using EHRs to assess remission of LTCs, were eligible for inclusion. Studies that did not clearly define remission and studies on cancer remission were excluded. Data were extracted from each eligible study using a structured table. Risk of bias was not assessed, in line with scoping review methodology. A narrative approach was taken to summarize and present data from the included studies. The number and characteristics of studies were described, both overall and by condition. Findings were discussed with clinicians and data experts to ensure applicability in clinical practice.

Results: ninety-one studies were included. Sample sizes ranged from 12 to 72.9 million adults. Studies were conducted in 18 countries, with the majority being from the United States. The majority of included studies used a cohort study design. Studies assessed how remission was defined in 12 LTCs, including inflammatory bowel disease (41/91, 45.1%), type 2 diabetes (n=15, 16.5%), depression (n=15, 16.5%), alcohol or drug misuse (n=8, 8.8%), asthma (n=3, 3.3%), multiple sclerosis (n=3, 3.3%), epilepsy (n=1, 1.1%), anemia (n=1, 1.1%), chronic kidney disease (n=1, 1.1%), autoimmune pancreatitis (n=1, 1.1%), hypertension (n=1, 1.1%), heart failure (n=1, 1.1%), and MLTC (n=1, 1.1%). Remission was typically defined using a combination of clinical codes (n=7, 7.7%), validated rating scales (n=56, 61.5%), biochemical markers (n=29, 31.9%), absence of symptoms (n=10, 11%), absence of condition-specific events (eg, hospital admissions; n=4, 4.4%), and cessation of pharmacological treatments (n=26, 28.6%). There was substantial variation in the criteria and duration of follow-up used to define remission across studies.

Conclusions: this review demonstrates that remission of LTCs can be identified and operationalized within EHRs, although remission criteria varied across studies. The review extends the literature on remission in EHRs by combining evidence synthesis and consultation with clinical and data experts to propose standardized comprehensive definitions to reliably define and implement remission of multiple LTCs in EHR-based research. This will allow cross-study comparisons and present an opportunity to advance understanding of disease trajectories and improve evaluation and monitoring of patient outcomes. Further research may apply, compare, and evaluate standardized definitions across different data sources to assess generalizability and further improve our understanding of remission of LTCs.
1438-8871
Hounkpatin, Hilda
5612e5b4-6286-48c8-b81f-e96d1148681d
Barton, Benjamin
14cf17dd-ca50-46cb-9d5b-007ae0e65384
Ogden, Margaret
108b3394-4fcc-4143-89c3-205f9cf40730
Mathur, Rohini
836dbc6e-1383-4bd4-8052-ac97ca6dca66
Stuart, Beth
e4f03cd8-23c0-4e67-b4bc-98bd2e1618bf
Dambha-Miller, Hajira
58961db5-31aa-460e-9394-08590c4b7ba1
Hounkpatin, Hilda
5612e5b4-6286-48c8-b81f-e96d1148681d
Barton, Benjamin
14cf17dd-ca50-46cb-9d5b-007ae0e65384
Ogden, Margaret
108b3394-4fcc-4143-89c3-205f9cf40730
Mathur, Rohini
836dbc6e-1383-4bd4-8052-ac97ca6dca66
Stuart, Beth
e4f03cd8-23c0-4e67-b4bc-98bd2e1618bf
Dambha-Miller, Hajira
58961db5-31aa-460e-9394-08590c4b7ba1

Hounkpatin, Hilda, Barton, Benjamin, Ogden, Margaret, Mathur, Rohini, Stuart, Beth and Dambha-Miller, Hajira (2026) Understanding remission of long-term conditions through electronic health records: a scoping review. Journal of Medical Internet Research, 28, [e80796]. (doi:10.2196/80796).

Record type: Article

Abstract

Background: multiple long-term conditions (MLTCs) require complex and prolonged treatment regimens. Remission in long-term conditions (LTCs) is important for understanding disease progression and evaluating treatment effectiveness. Electronic health records (EHRs) are increasingly used to monitor clinical outcomes, but how remission is defined within EHRs remains unclear.

Objective: this study aimed to summarize and collate the previous literature on how remission of LTCs has been defined in EHRs.

Methods: systematic electronic searches were performed on OVID MEDLINE, Embase, CINAHL EBSCO, the Cochrane Library, and the Bielefeld Academic Search Engine for eligible studies published from inception to November 27, 2025. Quantitative studies, published in any language, on adult populations, and using EHRs to assess remission of LTCs, were eligible for inclusion. Studies that did not clearly define remission and studies on cancer remission were excluded. Data were extracted from each eligible study using a structured table. Risk of bias was not assessed, in line with scoping review methodology. A narrative approach was taken to summarize and present data from the included studies. The number and characteristics of studies were described, both overall and by condition. Findings were discussed with clinicians and data experts to ensure applicability in clinical practice.

Results: ninety-one studies were included. Sample sizes ranged from 12 to 72.9 million adults. Studies were conducted in 18 countries, with the majority being from the United States. The majority of included studies used a cohort study design. Studies assessed how remission was defined in 12 LTCs, including inflammatory bowel disease (41/91, 45.1%), type 2 diabetes (n=15, 16.5%), depression (n=15, 16.5%), alcohol or drug misuse (n=8, 8.8%), asthma (n=3, 3.3%), multiple sclerosis (n=3, 3.3%), epilepsy (n=1, 1.1%), anemia (n=1, 1.1%), chronic kidney disease (n=1, 1.1%), autoimmune pancreatitis (n=1, 1.1%), hypertension (n=1, 1.1%), heart failure (n=1, 1.1%), and MLTC (n=1, 1.1%). Remission was typically defined using a combination of clinical codes (n=7, 7.7%), validated rating scales (n=56, 61.5%), biochemical markers (n=29, 31.9%), absence of symptoms (n=10, 11%), absence of condition-specific events (eg, hospital admissions; n=4, 4.4%), and cessation of pharmacological treatments (n=26, 28.6%). There was substantial variation in the criteria and duration of follow-up used to define remission across studies.

Conclusions: this review demonstrates that remission of LTCs can be identified and operationalized within EHRs, although remission criteria varied across studies. The review extends the literature on remission in EHRs by combining evidence synthesis and consultation with clinical and data experts to propose standardized comprehensive definitions to reliably define and implement remission of multiple LTCs in EHR-based research. This will allow cross-study comparisons and present an opportunity to advance understanding of disease trajectories and improve evaluation and monitoring of patient outcomes. Further research may apply, compare, and evaluate standardized definitions across different data sources to assess generalizability and further improve our understanding of remission of LTCs.

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Accepted/In Press date: 10 April 2026
e-pub ahead of print date: 19 May 2026
Published date: 19 May 2026

Identifiers

Local EPrints ID: 511643
URI: http://eprints.soton.ac.uk/id/eprint/511643
ISSN: 1438-8871
PURE UUID: c8923c2d-e4ae-45af-958b-2e645c23b664
ORCID for Hilda Hounkpatin: ORCID iD orcid.org/0000-0002-1360-1791
ORCID for Hajira Dambha-Miller: ORCID iD orcid.org/0000-0003-0175-443X

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Date deposited: 26 May 2026 16:47
Last modified: 30 May 2026 02:09

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Contributors

Author: Benjamin Barton
Author: Margaret Ogden
Author: Rohini Mathur
Author: Beth Stuart

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