TY - JOUR
T1 - Patient-reported outcome (PRO) measurements in chronic and malignant diseases
T2 - ten years' experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex
AU - Hjollund, Niels Henrik I
AU - Larsen, Louise Pape
AU - de Thurah, Annette Ladefoged
AU - Grove, Birgith Engelst
AU - Skuladottir, Halla
AU - Linnet, Hanne
AU - Friis, Rasmus Blechingberg
AU - Johnsen, Søren Paaske
AU - May, Ole
AU - Jensen, Annesofie Lunde
AU - Hansen, Troels Krarup
AU - Taarnhøj, Gry Assam
AU - Tolstrup, Lærke Kjær
AU - Pappot, Helle
AU - Ivarsen, Per
AU - Dørflinger, Liv
AU - Jessen, Anne
AU - Sørensen, Nanna Toxvig
AU - Schougaard, Liv Marit Valen
AU - Team, The AmbuFlex
N1 - © 2023. The Author(s).
PY - 2023/4
Y1 - 2023/4
N2 - BACKGROUND: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex' telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges.METHODS: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution.RESULTS: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little.DISCUSSION: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as replacement for clinical contact, special carefulness should be observed with respect to patient safety.
AB - BACKGROUND: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex' telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges.METHODS: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution.RESULTS: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little.DISCUSSION: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as replacement for clinical contact, special carefulness should be observed with respect to patient safety.
KW - Algorithms
KW - Child
KW - Female
KW - Humans
KW - Lung Neoplasms
KW - Outpatients
KW - Patient Reported Outcome Measures
KW - Quality of Life/psychology
KW - Decision support systems
KW - Chronic disease
KW - Algorithm
KW - Outpatient follow-up
KW - Patient-reported outcome measures
KW - Questionnaires
KW - Malignant diseases
UR - http://www.scopus.com/inward/record.url?scp=85146283230&partnerID=8YFLogxK
U2 - 10.1007/s11136-022-03322-9
DO - 10.1007/s11136-022-03322-9
M3 - Journal article
C2 - 36639598
VL - 32
SP - 1053
EP - 1067
JO - Quality of Life Research
JF - Quality of Life Research
SN - 0962-9343
IS - 4
ER -