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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

Flow diagram of recruitment
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Figure 2: Flow diagram of recruitment

Mentions: A recruitment flow diagram is seen in Figure 3, and characteristics of the population available for recruitment (total pool), who signed consent (consented), and who had a result posted to their ePHR (analyzable) are seen in Table 1. Over 6 months, 131 patients with CRC and EC were identified, and 91% were successfully approached during their hospitalization. Overall, 65 (54%) were ineligible at recruitment, over half (34/65, 54%) because of no Internet access or use of the Internet/email <1 time/week. Non-White patients were more likely than White to be ineligible (p=0.009), and those ≥65 were more likely to be ineligible (p=0.035). Other reasons for ineligibility included no diagnosis of cancer (n=26) and prior MMR screening for LS (n=5). Of the remaining 66 patients, 26% refused participation in the study, many indicating low interest. Patients either refused actively (n=10) at recruitment, or did not contact personnel after taking an informational flyer (n=7). Patients ≥65 years were more likely to refuse participation than those <65 (p=0.003).


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)

Flow diagram of recruitment
© Copyright Policy
Related In: Results  -  Collection

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

Figure 2: Flow diagram of recruitment
Mentions: A recruitment flow diagram is seen in Figure 3, and characteristics of the population available for recruitment (total pool), who signed consent (consented), and who had a result posted to their ePHR (analyzable) are seen in Table 1. Over 6 months, 131 patients with CRC and EC were identified, and 91% were successfully approached during their hospitalization. Overall, 65 (54%) were ineligible at recruitment, over half (34/65, 54%) because of no Internet access or use of the Internet/email <1 time/week. Non-White patients were more likely than White to be ineligible (p=0.009), and those ≥65 were more likely to be ineligible (p=0.035). Other reasons for ineligibility included no diagnosis of cancer (n=26) and prior MMR screening for LS (n=5). Of the remaining 66 patients, 26% refused participation in the study, many indicating low interest. Patients either refused actively (n=10) at recruitment, or did not contact personnel after taking an informational flyer (n=7). Patients ≥65 years were more likely to refuse participation than those <65 (p=0.003).

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