Remote research burden of follow-up in longitudinal patient-reported outcomes (PROs) data collection: An exploratory sequential mixed-methods study (Preprint)

Abstract

Longitudinal patient-reported outcomes studies require questionnaire assessments to be administered remotely multiple times, burdening research staff.

To define and quantify the burden that researcher may experience during patient follow-up.

Data were collected via interviews and a questionnaire. This study is an exploratory sequential mixed-methods study. Traditional content analysis was used for the qualitative data. Quantitative data were analyzed using Spearman’s correlation, and significance was tested using the chi-square test. Learning curves of healthcare staff regarding follow-up calls were generated using cumulative summation analysis.

We constructed a three-dimension conceptual framework for staff burden: (a) time-related burden, (b) technical-related burden, and (c) emotional-related burden. The quantitative analysis found that follow-up time was significantly correlated with staff experience, workload, and learning curve periods. There was a significant difference between the lost-to-follow-up rate of staff with and without follow-up experience with this program. Staff working on a daily assessment schedule had a higher lost-to-follow-up rate than those on a twice-a-week schedule. Additionally, inexperienced follow-up staff needed 113 calls to achieve stable follow-up time and quality, while experienced staff needed only 55 calls.

Researchers in longitudinal PROs projects suffer from a multidimensional burden during remote follow-up. Our results may help establish a proper PROs follow-up protocol to reduce the burden on research staff without sacrificing data quality.