Completeness of repeated patient-reported outcome measures in adult rehabilitation: a randomized controlled trial in a diverse clinical population.

Autor: Sand-Svartrud AL; Health Services Research and Innovation Unit, and Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Oslo, Norway. anne-lene.svartrud@diakonsyk.no., Kjeken I; Health Services Research and Innovation Unit, and Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Oslo, Norway., Skardal RF; Sørlandet Rehabilitation Center, Eiken, Norway., Gjerset GM; Montebello Rehabilitation Center, Mesnali, Norway., Johnsen TJ; Hernes Occupational Rehabilitation Center, Hernes, Norway., Lyken AD; Sørlandet Rehabilitation Center, Eiken, Norway., Dagfinrud H; Health Services Research and Innovation Unit, and Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Oslo, Norway., Moe RH; Health Services Research and Innovation Unit, and Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Oslo, Norway.
Jazyk: angličtina
Zdroj: BMC health services research [BMC Health Serv Res] 2024 Dec 24; Vol. 24 (1), pp. 1648. Date of Electronic Publication: 2024 Dec 24.
DOI: 10.1186/s12913-024-12103-8
Abstrakt: Background: Data collection through patient-reported outcome measures (PROMs) is essential for the purpose of rehabilitation research and registries. Existing problems with incomplete PROM data may relate to the patient burden and data set length. This study aimed to analyse response patterns and degree of data completeness in systematic outcome assessments conducted within a clinical study in a multidisciplinary rehabilitation setting, comparing completeness of a brief and a longer set of PROMs.
Methods: The Norwegian RehabNytte Cohort was developed to monitor patients' long-term benefit of rehabilitation and progress on PROMs. Adults admitted to one of 17 institutions providing mostly inpatient rehabilitation in secondary healthcare were included between January 2019 and March 2020, and followed for one year. For the purpose of the current randomized controlled trial, the Cohort-patients in 16/17 institutions were randomized to complete either a brief or a longer set of PROMs at admission, discharge, and after 3, 6 and 12 months. The brief set comprised the EQ-5D-5L and additional generic PROMs commonly used in rehabilitation settings. The longer data set expanded upon the brief set by including the Patient-Specific Functional Scale and the 29-item version of the PROMIS Profile instruments. Completeness was measured as the extent of present applicable PROM data at each time point. In addition, we assessed response patterns in terms of dropout rates and intermittently missed assessment events. The RehabNytte study is registered under ClinicalTrial.gov (NCT03764982, first posted 05.12.2018).
Results: Of the 2904 patients included, 1455 were assigned to the brief data set and 1449 to the longer data set. The majority of patients were referred to rehabilitation for rheumatic and musculoskeletal diseases (39.3%) or cancer (26.9%). The data set completeness was significantly higher in the brief set compared to the longer (p < 0.001). From admission to 12 months follow-up, differences in completeness between groups ranged from 6.5 to 12.6 percentage points, consistently favouring the brief set. Completeness was highest at admission, reaching 96.8% (95% CI 0.96-0.98) for the brief set and 84.2% (95% CI 0.82-0.86) for the longer set. The lowest completeness was observed at discharge, with 46.0% (95% CI 0.43-0.49) for the brief set and 39.5% (95% CI 0.37-0.42) for the longer one. Discharge was the only time point without automatic reminders to non-responders from the digital data collection system. Patients responding to the longer data set exhibited the highest dropout rates, while degree of intermittent missing data was comparable between groups. In both groups, only one-third of patients provided complete or partly responses at all five time points.
Conclusions: This study demonstrated that a brief set of PROMs achieved higher data completeness compared to a longer set, when used for repeated measurements in a rehabilitation research setting.
Competing Interests: Declarations. Ethics approval and consent to participate: Written informed consent to participate was obtained from all patients. Patient research partners and clinician-representatives were involved in all stages of the study. This study was considered by the Norwegian Regional Committee for Medical Research Ethics as not requiring approval, because of its overarching goal to evaluate the delivery of rehabilitation services (2018/1645/REK South-East A). It was recommended by the data protection officer at Diakonhjemmet Hospital (DS-00040), dated 17.10.2018, and registered in ClinicalTrials.gov (NCT03764982), first posted 05.12.2018. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.
(© 2024. The Author(s).)
Databáze: MEDLINE
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