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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.

Hall MJ, Herda MM, Handorf EA, Rybak CC, Keleher CA, Siemon M, Daly MB - Genet. Med. (2014)

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Fox Chase Cancer Center, Philadelphia, Pennsylvania, USA.

ABSTRACT

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.

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Related in: MedlinePlus

Schema of study procedures
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Related In: Results  -  Collection


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Figure 1: Schema of study procedures

Mentions: A schema of study procedures is seen in Figure 2. Patients undergoing resection of a CRC or EC adenocarcinoma were identified using operating room schedules. Patients ≥18 years were approached by study personnel 48–72 hours post-operatively. Internet access and use requirements were screened with three questions, “Do you have Internet access at home, at work, at another location, or through a personal Smartphone?”, “Do you use the Internet ≥1 time/week?” and “Do you have an email account that you access ≥1 time/week?” and were required to all be positive before proceeding. Patients meeting Internet requirements were briefly introduced to the study using a prepared script, and were made aware that they would receive a routine genetic screening result for hereditary cancer risk evaluation via their ePHR if they agreed to participate.


Direct-to-patient disclosure of results of mismatch repair screening for Lynch syndrome via electronic personal health record: a feasibility study.

Hall MJ, Herda MM, Handorf EA, Rybak CC, Keleher CA, Siemon M, Daly MB - Genet. Med. (2014)

Schema of study procedures
© Copyright Policy
Related In: Results  -  Collection

Show All Figures
getmorefigures.php?uid=PMC4216634&req=5

Figure 1: Schema of study procedures
Mentions: A schema of study procedures is seen in Figure 2. Patients undergoing resection of a CRC or EC adenocarcinoma were identified using operating room schedules. Patients ≥18 years were approached by study personnel 48–72 hours post-operatively. Internet access and use requirements were screened with three questions, “Do you have Internet access at home, at work, at another location, or through a personal Smartphone?”, “Do you use the Internet ≥1 time/week?” and “Do you have an email account that you access ≥1 time/week?” and were required to all be positive before proceeding. Patients meeting Internet requirements were briefly introduced to the study using a prepared script, and were made aware that they would receive a routine genetic screening result for hereditary cancer risk evaluation via their ePHR if they agreed to participate.

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Fox Chase Cancer Center, Philadelphia, Pennsylvania, USA.

ABSTRACT

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.

Show MeSH
Related in: MedlinePlus