How Dr. Mucsi and his team are collecting patient-reported outcomes with DADOS

Dr. Mucsi is a transplant nephrologist and clinical investigator with the Multiple Organ Transplant (MOT) group at UHN. His group is interested in the illness experience of kidney transplant recipients and patients with chronic kidney disease. They track patients’ experience by collecting patient-reported outcomes such as quality of life, side effects, psychological distress and other parameters.

For their work, Dr. Mucsi and his team need to maintain a large number of different questionnaires and a well-designed data collection system is essential. With DADOS, they’re able to maintain a number of questionnaires, create forms themselves, and offer questionnaires through a web portal which supports multiple ways to be administered. DADOS can be administered within UHN using tablets, outside of UHN using DADOS Connect on tablets and by sending a link via email using DADOS Connect. On the administrative end, the DADOS interface allows for data entry – data that is extracted from patient records and entered manually.

Another requirement for Dr. Mucsi was a system that was secure and complied with privacy requirements. The DADOS system is installed on UHN Research servers and is secured on UHN grounds. All Patient Health Information (PHI) is encrypted within the database using Advanced Encryption Standard. The decrypted information is only accessible to appropriate users in limited locations in the system. Once a subject is entered into a study, the subject is subsequently referred by a unique identifier.

Additionally, data integrity is ensured through an audit log for all data entered in DADOS – the audit log shows changes made to the data and the username of the person who made the changes.

Initially, they tried a product that didn’t fit their needs and a coworker at the UHN Transplant Program brought DADOS to Dr. Mucsi’s attention.

At first, Dr. Mucsi and his team conducted a pilot study where they created a number of questionnaires into the DADOS platform and asked patients with various stages of chronic kidney disease to complete questionnaires on iPads using the platform’s patient user interface. They aimed to assess the feasibility of collecting patient information using DADOS on tablet computers.

“The pilot study was a success, and most of our patients liked the fact that they didn’t require a lot of help with the platform.” – Dr. Mucsi

Recently, Dr. Mucsi engaged the DADOS team about using computer adaptive testing (CAT) to administer certain questionnaires and specifically several Patient-Reported Outcome Measurement Information System (PROMIS®)item banks. Using PROMIS® CATs substantially reduces questionnaire burden (on average, asking from four to six questions for every domain is sufficient, done within ~ 1 minute) while maintaining or increasing measurement precision. The DADOS team was able to integrate the two systems for Dr. Mucsi’s team and they’ve been using it since.

Dr. Mucsi and his team have now been using DADOS for more than two years. They have used DADOS at UHN, Humber River Hospital, Brampton Civic and St Michael’s Hospital (using tablets). They have recruited about 1000 patients across multiple studies.

Dr. Mucsi will be given a talk on the Integration of DADOS with CAT-based PROMIS® tools at the 2019 DADOS User Group Meeting on July 15th between 8:00 AM and 11:00 AM. Click here to learn more about the event!