recontact in clinical genetics reclassification actionable information ehealth webapplication PHR
Conditions
Interventions
The intervention studied is the receiving of new, layered actionable information about their genetic condition/ results of past genetic testing via a personal health record designed for this purpose,
receiving new information about a patients genetic condition/ results of past genetic testing via a personal letter, with the same options for follow up contacts.
Sponsors
University Medical Center Groningen
Hanzeplein 1
9713 GZ Groningen
The Netherlands
Eligibility
Inclusion criteria
Inclusion criteria: - (former) patient of the clinical genetics department of the University Medical Center Groningen (or possibly another Dutch department for clinical genetics, in case the trial becomes multicenter) - (former) patient falls under one of the specified groups eligible for recontact (e.g. NF1 patients, reclassification patients) - (former) patient >16 years or parents of a (former) patient <16 years - (former) patient wishes to receive new information about his/ her genetic condition/result of past genetic testing - access to a PC or tablet/ ipad with internet - an e-mailaddress - mastery of the Dutch language - written informed consent
Exclusion criteria
Exclusion criteria: - (former) patient opts out of receiving new information about his/ her genetic condition/result of past genetic testing or doesn't answer first message about the possibility of receiving new information. - no access to a PC or tablet/ ipad with internet (however if this is the case, patients are asked to fill in the questionnaires (seperate cohort)) - no e-mailaddress (however if this is the case, patients are asked to fill in the questionnaires (seperate cohort)) - no mastery of the Dutch language - no written informed consent
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| experience with the personal health record compared to standard care: - acceptability and usability ((adaptations of) the System Usability Scale, PWU, Webclic, VisAWI-s) psychological impact of recontact via the online personal health record compared to standard care: - anxiety (STAI: 6 items) - worries (adaptation of the Cancer Worry Scale) - affect (adaptation of the PANAS) - trust in clinical genetics/ clinical geneticist Dutch version of the Wake Forest Physician Trust Scale | — |
Secondary
| Measure | Time frame |
|---|---|
| experience with the information message: - content - construction - clarity understanding of the new information: - knowledge questions - risk perception pratical implications: - opting out of new information - requested follow-up with clinical genetics department - informing of medical professionals/ familymembers about the new information by patients | — |
Outcome results
None listed