Validity of patient-reported data collected through mobile application in a first paediatric at-home study

Article type
Authors
von Niederhäusern B1, Saccilotto R1, Schädelin S2, Summerer M3, Ziesenitz V3, Hammann A4, Bielicki J3, Pfister M5, Pauli-Magnus C6
1Department of Clinical Research, University and University Hospital Basel
2Clinical Trial Unit, Department of Clinical Research, University and University Hospital Basel
3Department of Pediatric Infectiology, University Children’s Hospital Basel
4Clinical Trial Unit, Department of Clinical Research, University Hospital Basel
5Pediatric Pharmacology and Pharmacometrics, University of Basel Children’s Hospital
6Department of Clinical Research, University Hospital Basel
Abstract
Background: Clinical studies in children are challenging, yet they are urgently needed to advance our knowledge on optimal dosing and action of medicines. Remote 'at-home' trials are suggested as an option for a more patient-centred future of trials.

Objectives: This pilot aimed to study the technical and practical feasibility of collecting valid data in paediatric at-home trials.

Methods: This was a single-centre, prospective pilot study including 22 children, 2-5 years of age, undergoing elective tonsillectomy at the University Children’s Hospital Basel (model population). Using a specifically developed mobile application, time-stamped data were collected by caregivers on 2-4 inpatient study days with the support of study nurses and on 3 consequent study days at home. Biological samples (saliva) were collected throughout the study. The primary endpoint was the proportion of complete and correct caregiver-collected clinical data and saliva samples in the at-home setting. Secondary endpoints included practicability of this type of study for participants, the proportion of caregivers consenting to take part in the study (including reasons associated with non-consent), and the cost-effectiveness of performing such a study.

Results: At the Summit, we will present the results on the completeness and correctness of data collected by caregivers through a mobile application, and the practicability of mobile-data collection for both caregivers and study personnel. In particular, we will report on how reliable (i.e. match between automatically recorded time point and caregiver-reported time point of data entry) data collection was performed, and the factors associated with valid or invalid data collection (i.e. specific time points, inter-caregiver variation).

Conclusion: Although remote trials are increasingly performed, the aspect of data validity, and therefore study quality, is often neglected. This is a first pilot investigating the correctness of data collected by patients remotely. If proven successful, this approach holds considerable promise in strengthening the evidence-base on treatment options