Nationwide, large-scale implementation of an online system for remote entry of patient-reported outcomes in rheumatology: characteristics of users and non-users and time to first entry

Bente Glintborg*, Dorte Vendelbo Jensen, Lene Terslev, Oliver Hendricks, Mikkel Østergaard, Simon Horskjær Rasmussen, Mogens Pfeiffer Jensen, Thomas Adelsten, Ada Colic, Kamilla Danebod, Malene Kildemand, Anne Gitte Loft, Heidi Lausten Munk, Jens Kristian Pedersen, René Drage Østgård, Christian Møller Sørensen, Niels Steen Krogh, Jette Agerbo, Connie Ziegler, Merete Lund Hetland

*Corresponding author for this work

Abstract

AIMS: In May 2020, a nationwide, web-based system for remote entry of patient-reported outcomes (PROs) in inflammatory rheumatic diseases was launched and implemented in routine care (DANBIO-from-home). After 1.5 years of use, we explored clinical characteristics of patients who did versus did not use the system, and the time to first entry of PROs.

METHODS: All patients followed in DANBIO were informed about DANBIO-from-home by electronic invitations or when attending their clinic. Characteristics of patients who did/did not use DANBIO-from-home in the period after implementation were explored by multivariable logistic regression analyses including demographic and clinical variables (gender, age group, diagnosis, disease duration, use of biological disease-modifying agent (bDMARD), Health Assessment Questionnaire (HAQ), Patient Acceptable Symptom Scale (PASS)). Time from launch to first entry was presented as cumulative incidence curves by age group (<40/40-60/61-80/>80 years).

RESULTS: Of 33 776 patients, 68% entered PROs using DANBIO-from-home at least once. Median (IQR) time to first entry was 27 (11-152) days. Factors associated with data entry in multivariate analyses (OR (95% CI)) were: female gender (1.19 (1.12 to 1.27)), bDMARD treatment (1.41 (1.33 to 1.50)), age 40-60 years (1.79 (1.63 to 1.97)), 61-80 years (1.87 (1.70 to 2.07), or age >80 years (0.57 (0.50 to 0.65)) (reference: age <40 years), lower HAQ (0.68 (0.65 to 0.71)) and PASS 'no' (1.09 (1.02 to 1.17). Diagnosis was not associated. Time to first entry of PROs was longest in patients <40 years of age (119 (24-184) days) and shortest in the 61-80 years age group (25 (8-139) days).

CONCLUSION: A nationwide online platform for PRO in rheumatology achieved widespread use. Higher age, male gender, conventional treatment and disability were associated with no use.

Original languageEnglish
Article numbere002549
JournalRMD Open
Volume8
Issue number2
ISSN2056-5933
DOIs
Publication statusPublished - Nov 2022

Keywords

  • Humans
  • Male
  • Female
  • Aged, 80 and over
  • Adult
  • Middle Aged
  • Infant
  • Infant, Newborn
  • Rheumatology
  • Patient Reported Outcome Measures
  • Online Systems

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