Patient-reported outcome (PRO) measurements in chronic and malignant diseases: ten years’ experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex

Abstract

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.

Remote Symptom Monitoring Using Patient-Reported Outcomes in Patients With Chronic Kidney Disease: Process Evaluation of a Randomized Controlled Trial

“…Several studies have highlighted the importance of patients and health care providers knowing why PROs are used and the relevance of the questions asked [ 35 , 36 ]. The fact that the intervention was implemented in a real-life setting and that the users were involved in its development may have impacted patient and clinical engagement with PRO-based remote follow-up [ 4 , 37 ].…”

“…Thus, the proportion of patients contacted by physicians was relatively high, which may indicate a high claim for clinical attention in this patient group. However, it may also indicate a sensitive algorithm [ 4 ]. The clinical experts aimed to develop an algorithm with high sensitivity since a low level of false-negative cases was more important than a high level of false-positive cases.…”

“…One way of remotely monitoring patients is to collect information about their symptoms by obtaining repetitive patient-reported outcomes (PROs) while the patients are at home. This allows for frequent capture of important disease-specific outcomes and also allows clinicians direct access to the patients’ health status [ 4 , 5 ]. PROs are measures of a patient’s health conveyed directly by the patient, without interpretation by a clinician or anyone else [ 6 ], often gathered from electronic questionnaires.…”

“…PROs are measures of a patient’s health conveyed directly by the patient, without interpretation by a clinician or anyone else [ 6 ], often gathered from electronic questionnaires. Remote monitoring using PROs is increasingly applied among patients with chronic conditions in Denmark [ 4 , 7 ]. However, several personal and external factors may affect a person’s ability to engage with and use digital health interventions [ 8 , 9 ].…”

Global use of electronic patient-reported outcome systems in nephrology: a mixed methods study

“…Training in all systems was predominantly linked to ePROs system functionality; formal interpretation guidance beyond provision of cut scores or basic colour coding was rare or ‘to be developed’. Electronic questionnaires which use and calculate scores or colour codes specifically for decision aids for treatment are considered medical devices and must comply with relevant legislation 62. Most systems offered or were developing self-management guidance for patients.…”