Chronic-generic and condition-specific quality of life outcome measures for adults with cerebral palsy: a systematic review

There is limited knowledge about quality of life (QoL) outcome measures for adults with cerebral palsy (CP). This systematic review aimed to identify and evaluate the properties of the chronic generic and CP-specific outcome measures used to assess QoL in adults with CP. A two-stage electronic database search strategy was employed up until June 2025. Stage 1 identified chronic generic and CP-specific QoL outcome measures, and Stage 2 identified studies examining the psychometric properties of these measures. The methodological quality of the studies examining the psychometric properties of the identified QoL outcome measures was assessed using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. Fifteen QoL outcome measures were identified in Stage 1 as being used to evaluate QoL in adults with CP. The psychometric properties of the fifteen outcome measures were appraised in twenty-five studies. Following COSMIN guidelines, none of the outcome measures demonstrated high-quality evidence for any psychometric property or evidence for all nine psychometric properties. Only one outcome measure, the CPAdult, was identified as being designed specifically for evaluating QoL in adults with CP. There is insufficient psychometric property evidence for using existing QoL outcome measures in adults with CP. Future studies should enhance the validity of current and new QoL outcome measures for adults with CP by implementing a clear QoL definition and applying the COSMIN guidelines to strengthen the measurement properties of QoL outcome measures in this population. This systematic review was prospectively registered on the International Prospective Register of Systematic Reviews (PROSPERO) under reference number (CRD42023462841).