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Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study

PURPOSE: The adoption of universal mismatch repair (MMR) screening of colorectal (CRC) and endometrial cancers (EC) has the potential to improve detection of Lynch syndrome (LS) and health outcomes among cancer patients and family members. Electronic patient health records (ePHRs) represent an innov...

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Autores principales: Hall, Michael J, Herda, Meagan M, Handorf, Elizabeth A, Rybak, Christina C, Keleher, Cindy A, Siemon, Mark, Daly, Mary B
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4216634/
https://www.ncbi.nlm.nih.gov/pubmed/24784156
http://dx.doi.org/10.1038/gim.2014.42
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author Hall, Michael J
Herda, Meagan M
Handorf, Elizabeth A
Rybak, Christina C
Keleher, Cindy A
Siemon, Mark
Daly, Mary B
author_facet Hall, Michael J
Herda, Meagan M
Handorf, Elizabeth A
Rybak, Christina C
Keleher, Cindy A
Siemon, Mark
Daly, Mary B
author_sort Hall, Michael J
collection PubMed
description PURPOSE: The adoption of universal mismatch repair (MMR) screening of colorectal (CRC) and endometrial cancers (EC) has the potential to improve detection of Lynch syndrome (LS) and health outcomes among cancer patients and family members. Electronic patient health records (ePHRs) represent an innovative, resource-efficient route to deliver results directly to patients that could be enhanced by multi-media interventions to improve critical downstream outcomes. The current study examines feasibility and acceptability of this approach. METHODS: Patients hospitalized for resection of CRC or EC were recruited to receive their MMR result via institutional ePHR. Baseline and follow-up assessments were conducted. RESULTS: 74% (49/66) of eligible patients consented, and 81% (29/36) participants who had a result posted to their ePHR completed follow-up, surpassing feasibility thresholds, with 14% (5/36) receiving an abnormal result. Ratings of the study approach surpassed the acceptability threshold–97% had a mean score of ≥4 on a 7-point scale–and were high regardless normal or abnormal result. Ineligibility was more common among non-White (p=0.009) and ≥65 (p=0.035) participants due to low Internet use/no access. CONCLUSION: ePHR-based result disclosure for MMR screening is feasible to study and acceptable to patients, but minority and elderly patients may experience greater barriers to participation.
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spelling pubmed-42166342015-11-01 Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study Hall, Michael J Herda, Meagan M Handorf, Elizabeth A Rybak, Christina C Keleher, Cindy A Siemon, Mark Daly, Mary B Genet Med Article PURPOSE: The adoption of universal mismatch repair (MMR) screening of colorectal (CRC) and endometrial cancers (EC) has the potential to improve detection of Lynch syndrome (LS) and health outcomes among cancer patients and family members. Electronic patient health records (ePHRs) represent an innovative, resource-efficient route to deliver results directly to patients that could be enhanced by multi-media interventions to improve critical downstream outcomes. The current study examines feasibility and acceptability of this approach. METHODS: Patients hospitalized for resection of CRC or EC were recruited to receive their MMR result via institutional ePHR. Baseline and follow-up assessments were conducted. RESULTS: 74% (49/66) of eligible patients consented, and 81% (29/36) participants who had a result posted to their ePHR completed follow-up, surpassing feasibility thresholds, with 14% (5/36) receiving an abnormal result. Ratings of the study approach surpassed the acceptability threshold–97% had a mean score of ≥4 on a 7-point scale–and were high regardless normal or abnormal result. Ineligibility was more common among non-White (p=0.009) and ≥65 (p=0.035) participants due to low Internet use/no access. CONCLUSION: ePHR-based result disclosure for MMR screening is feasible to study and acceptable to patients, but minority and elderly patients may experience greater barriers to participation. 2014-05-01 2014-11 /pmc/articles/PMC4216634/ /pubmed/24784156 http://dx.doi.org/10.1038/gim.2014.42 Text en http://www.nature.com/authors/editorial_policies/license.html#terms Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use:http://www.nature.com/authors/editorial_policies/license.html#terms
spellingShingle Article
Hall, Michael J
Herda, Meagan M
Handorf, Elizabeth A
Rybak, Christina C
Keleher, Cindy A
Siemon, Mark
Daly, Mary B
Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study
title Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study
title_full Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study
title_fullStr Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study
title_full_unstemmed Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study
title_short Direct-to-patient disclosure of results of mismatch repair (MMR) screening for Lynch syndrome via electronic personal health record (ePHR): A feasibility study
title_sort direct-to-patient disclosure of results of mismatch repair (mmr) screening for lynch syndrome via electronic personal health record (ephr): a feasibility study
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4216634/
https://www.ncbi.nlm.nih.gov/pubmed/24784156
http://dx.doi.org/10.1038/gim.2014.42
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