Integrated pedigree for the premature atherosclerosis family out-patient clinic

Scientific Research Project Number: MA 2018 019
Place: Amsterdam UMC, location AMC, Dept of clinical epidemiology, bio statistics and bio-informatics

Integrated pedigree for the premature atherosclerosis family out-patient clinic

Description

The family outpatient clinic on premature atherosclerosis investigates patients and families in which coronary artery disease, stroke or peripheral artery disease occurs at a young age (before 51 years in men and before 56 years in woman). Often multiple family members are affected, suggesting a genetic predisposition. To better understand whether ‘healthy’ family members are at risk a detailed pedigree is constructed. This helps the clinician to evaluate the individual risk of each family member and guides further examinations and treatments.

Nowadays all pedigree programs are so difficult to work with, that it takes the physicians either an awful lot of time or it makes them decide to manually draw the pedigree on paper during the consultation together with the patient. This is very time consuming and takes precious out-patient clinic time. Besides, most family members like to discuss details of their pedigree with other family members which is impossible during the out-patient clinic consultation. Therefore, it’s of tremendous importance to be able to offer a patient friendly pedigree program, easy to fill out at home in their own time and when preferred, with the help of other family members.

We believe that patient satisfaction as well as the physicians efficiency will be increased, with an easy to handle internet based pedigree program. Therefore we hypothesize, that an easy to handle internet based pedigree program, will save time at the out-patient clinic and will make the families more content.

Several open-source web-based pedigree programs are available, which will need to be adjusted for use in our out-patient clinic. One example is the Java-written PhenoTips (www.phenotips.org). The application then needs to be integrated in an already existing patient portal, in which patients are already capable of register different health related issues. This portal is secured and therefore privacy proof.

Research questions

1. Are we able to improve patients satisfaction by developing an easy to handle pedigree program integrated in an already existing personalized health portal?

2. Can we save precious out-patient clinic time when working with this internet based easy to handle pedigree?

3. Can we improve the accuracy of the pedigree when it’s filled out at home in patients own time and with the possibility of other family members to help out?

Expected results:

We expect that with this easy to handle pedigree program the efficiency of the out-patient clinic will improve. Besides, we also expect the families to be more involved in their family illness and that they will be more satisfied by the efficiency of the out-patient clinic.


Contact

Dr S.J. Pinto-Sietsma, vasculair internist and clinical epidemiologist, Department of clinical epidemiology, bio statistics and bio-informatics , s.j.pinto@amsterdamumc.nl