Abstract
Introduction
Over the past decades, a large number of patient-reported outcome measures (PROMs) have been developed for use in spinal cord injury (SCI) research and practice, which evaluate the patient's own perceptions and opinions. However, little is known about the measurement properties of the PROMs used in this population. The objectives of this systematic review were to appraise the methodological quality of the studies on reliability, validity, responsiveness and interpretability of the patient-reported SCI outcome measures and to evaluate and summarize the quality of the measurement instruments.
Material and Methods
A systematic search of literature in EMBASE, MEDLINE, PsycINFO and CINAHL was performed. Articles were included when they concerned the development of PROMs or the evaluation of their measurement properties in SCI population. Methodological quality of the studies was evaluated using the four-point rating system of the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist. The overall quality of the measurement instruments was rated using a pre-defined criteria. The selection process, data extraction and quality assessment were performed by two independent reviewers and disagreements were resolved by consensus. In case of remaining controversy, a third reviewer made the final decisions.
Results
A total of 9337 articles were screened for eligibility. A wide variety of PROMs measuring different constructs, including quality of life, participation, physical activity, rehabilitation needs, pain, and spasticity were identified. Reliability was the most frequently evaluated measurement property. There was a paucity of literature addressing the responsiveness, measurement error, content and cross-cultural validity of the PROMs. The methodological quality of a majority of the studies was fair to poor and small sample size was a common drawback among the low quality studies. There were many validity studies with indeterminate results due to lack of pre-defined hypotheses.
Conclusion
There is an urgent need for high quality studies on measurement properties of PROMs in SCI population. Considering the importance of scientifically sound measurements, cautious use of the PROMs is advised until further evidence is available.