Patients’ reasons for non-use of digital patient-reported outcome concepts: A scoping review

Abstract

Data from digitally administered patient reported outcomes (PROs) is used more and more in routine healthcare for long-term conditions as a part of daily clinical practice. This literature study reviews empirical studies of digital PRO to examine patients’ reasons for non-use of digitally administered PRO data in routine care. This scoping review searched through PubMed, Embase, Web of Science and PsycINFO databases, reporting on study population, intervention, duration of intervention and motivational factors alongside stated reasons for nonparticipation or dropout for each study. The patients’ reasons for not participating, either from study start or by dropout, were analysed through a thematic approach. Fifty-one studies were included, published from 2010 to 2019, mostly from Europe and the Unites States covering different long-term conditions. The reasons for non-use are manifold and cover the themes of ability to use PRO, engagement, emotional distress and technical barriers. Several reasons are given explaining why patients with long-term conditions are not using digitally administered PRO as intended. This should be taken into account in the design phase of digital PRO interventions and considered in conversations with patients during the intervention.

Reasons for not reaching or using web-based self-management applications, and the use and evaluation of Oncokompas among cancer survivors, in the context of a randomised controlled trial

“…Only 52% of the participants met the defined criteria, which is similar to other studies, showing that about 50% of the participants fully adhere to web-based interventions ( Kelders et al, 2012 ). Reasons for non-use were similar to those of a scoping review on non-using digital patient-reported outcome interventions, that reasons were related to skills, emotional distress and technical barriers ( Nielsen et al, 2020 ).…”

Patient-Reported Outcomes Measures in Abdominal Cancer Surgery and Student-Led Surgical Research

“…The digital patient-reported outcomes has some limitations that can be divided in four categories: ability to use PROMs, engagement, emotional distress, and technical barriers. 9 Some reasons for nonparticipation can be related to fear or expectations; these can be addressed by providing the patients with adequate information, identifying possible causes for concern. This makes adequate communication between patient and clinician of great importance.…”

Symptom Monitoring based on Digital Data Collection During Inpatient Treatment of Schizophrenia Spectrum Disorders – a Feasibility Study

“…perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in The copyright holder for this this version posted October 1, 2021. ; https://doi.org/10.1101/2021.10.01.21264398 doi: medRxiv preprint disinterest in the study, which is also one of the main factors for non-use of digital-reported outcome concepts in non-psychiatric patients (Nielsen et al, 2020).…”