The NeuoQoL measure was recently co-designed with patients and carers, measuring aspects of physical, mental, and social health. It possesses characteristics such as brevity, flexibility in administration, and suitability, for cross-disease comparisons that may be advantageous to users in a variety of settings. The project is targeting 5 adult conditions (stroke, multiple sclerosis, Parkinsons disease, epilepsy and ALS) and 2 paediatric conditions (epilepsy and muscular dystrophies).
Type of measure
The measures in this compendium can take a variety of forms. Generally, they will be either Patient Reported Outcome Measure (PROM) or Patient Reported Experience Measure (PREM). However, we have also included a few measures that are completed by proxy-individual (PROXY), which are useful in instances where the respondent cannot answer directly (e.g. dementia or end of life). Sometimes, these measures can even be a composite of these types, and target both experiences and outcomes – we have labelled these measures “PROEMs”.