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,
Merete Lund Hetland,
Anne Gitte Loft,
Oliver Hendricks,
Kamilla Danebod,
Dorte Vendelbo Jensen,
Niels Steen Krogh,
Lene Terslev,
Mikkel Østergaard,
Jens Kristian Pedersen,
Simon Horskjær Rasmussen,
Thomas Adelsten,
Ada Colic,
Malene Kildemand,
Heidi Lausten Munk,
René Drage Østgård,
Christian Møller Sørensen,
Jette Agerbo,
Connie Ziegler,
Mogens Pfeiffer Jensen
Affiliations
Bente Glintborg
4 The DANBIO registry and Center for Rheumatology and Spine Diseases, Copenhagen University Hospital, Glostrup, Denmark
Merete Lund Hetland
4 The DANBIO registry and Center for Rheumatology and Spine Diseases, Copenhagen University Hospital, Glostrup, Denmark
Anne Gitte Loft
Department of Rheumatology, Aarhus University Hospital, Aarhus, Denmark
Oliver Hendricks
Danish Hospital for Rheumatology, University of Southern Denmark, Sønderborg, Syddanmark, Denmark
Kamilla Danebod
Copenhagen Center for Arthritis Research (COPECARE), Center for Rheumatology and Spine Diseases, Centre of Head and Orthopedics, Rigshospitalet Glostrup, Glostrup, Denmark
7 Center for Rheumatology and Spine Diseases, Rigshospitalet, Kobenhavn, Denmark
Mikkel Østergaard
Copenhagen Center for Arthritis Research, Center for Rheumatology and Spine Diseases, Rigshospitalet, Copenhagen, Denmark
Jens Kristian Pedersen
Section of Rheumatology, Department of Medicine, Svendborg Hospital, Svendborg, Denmark
Simon Horskjær Rasmussen
Copenhagen Center for Arthritis Research (COPECARE), Center for Rheumatology and Spine Diseases, Centre of Head and Orthopedics, Rigshospitalet Glostrup, Glostrup, Denmark
Thomas Adelsten
Department of Rheumatology, Sjællands Universitetshospital Køge, Koge, Sjælland, Denmark
Ada Colic
Department of Rheumatology, Sjællands Universitetshospital Køge, Koge, Sjælland, Denmark
Malene Kildemand
Department of Rheumatology, Odense University Hospital, Odense, Denmark
Heidi Lausten Munk
Rheumatology Research Unit, Department of Rheumatology, Odense University Hospital, Odense, Denmark
René Drage Østgård
Diagnostic center, Silkeborg Regional Hospital, Silkeborg, Midtjylland, Denmark
Christian Møller Sørensen
Department of Medicine, Regional Hospital Horsens, Horsens, Midtjylland, Denmark
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.
