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Direct-to-patient disclosure of results of mismatch repair screening for Lynch syndrome via electronic personal health record: a feasibility study
Genet Med. 2014 Nov;16(11) :854-61
PMID: 24784156    PMCID: PMC4216634   
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PURPOSE: The adoption of universal mismatch repair screening of colorectal and endometrial cancers has the potential to improve detection of Lynch syndrome, as well as to improve health outcomes among cancer patients and their family members. Electronic patient health records represent an innovative, resource-efficient route of delivering results directly to patients that could be enhanced by multimedia interventions to improve critical downstream outcomes. The current study examines the feasibility and acceptability of this approach. METHODS: Patients hospitalized for resection of colorectal or endometrial cancer were recruited to receive their mismatch repair result via institutional electronic patient health record. Baseline and follow-up assessments were conducted. RESULTS: In all, 74% (49/66) of eligible patients consented, and 81% (29/36) of participants who had a result posted to their electronic patient health record 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 of whether the results were normal or abnormal. Ineligibility was more common among non-white patients (P = 0.009) and patients >/= 65 of age (P = 0.035) due to either low Internet use or access to the Internet. CONCLUSION: Electronic patient health record-based result disclosure for mismatch repair screening is feasible to study and is acceptable to patients, but minority and elderly patients may experience greater barriers to participation.Genet Med 16 11, 854-861.
Hall, Michael J Herda, Meagan M Handorf, Elizabeth A Rybak, Christina C Keleher, Cindy A Siemon, Mark Daly, Mary B P30 006927-45/PHS HHS/United States P30 CA006927/CA/NCI NIH HHS/United States Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't United States Genet Med. 2014 Nov;16(11):854-61. doi: 10.1038/gim.2014.42. Epub 2014 May 1.