Determinants of Dropping Out of Remote Patient-Reported Outcome-Based Follow-Up Among Patients With Epilepsy: Prospective Cohort Study

JMIR Form Res. 2025 Jan 14:9:e58258. doi: 10.2196/58258.

Abstract

Background: The use of patient-reported outcome (PRO) measures is an emerging field in health care. In the Central Denmark Region, epilepsy outpatients can participate in remote PRO-based follow-up by completing a questionnaire at home instead of attending a traditional outpatient appointment. This approach aims to encourage patient engagement and is used in approximately half of all epilepsy outpatient consultations. However, dropout in this type of follow-up is a challenging issue.

Objective: This study aimed to examine the association between potential self-reported determinants and dropout in remote PRO-based follow-up for patients with epilepsy.

Methods: This prospective cohort study (n=2282) explored the association between dropout in remote PRO-based follow-up for patients with epilepsy and 9 potential determinants covering 3 domains: health-related self-management, general and mental health status, and patient satisfaction. The associations were examined using multiple logistic regression analyses with adjustment for sex, age, education, and cohabitation.

Results: A total of 770 patients (33.7%) dropped out of remote PRO-based follow-up over 5 years. Statistically significant associations were identified between all potential determinants and dropouts in PRO-based follow-up. Patients with low social support had an odds ratio of 2.20 (95% CI 1.38-3.50) for dropout. Patients with poor health ratings had an odds ratio of 2.17 (95% CI 1.65-2.85) for dropout. Similar estimates were identified for the remaining determinants in question.

Conclusions: Patients with reduced self-management, poor health status, and low patient satisfaction had higher odds of dropout in remote PRO-based follow-up. However, further research is needed to determine the reasons for dropout.

Keywords: Denmark; cohort study; digital solutions; dropouts; epilepsy; health care; logistic regression; mental health; neurological condition; outpatient care; patient satisfaction; patient-reported outcome measures; seizure disorder; self-management; self-reported; social support.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Cohort Studies
  • Denmark / epidemiology
  • Epilepsy* / epidemiology
  • Epilepsy* / psychology
  • Epilepsy* / therapy
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Middle Aged
  • Patient Dropouts* / psychology
  • Patient Dropouts* / statistics & numerical data
  • Patient Reported Outcome Measures*
  • Prospective Studies
  • Surveys and Questionnaires