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Patient‐reported outcome measures in neurodisability: fit for purpose or scope for improvement?

As a clinician and researcher, selecting an appropriate outcome measure from the many that are available can be overwhelming. Information of their characteristics beyond what is contained within test manuals, and evidence for their psychometric properties, often exist in diverse pieces of research literature. It can be a time-consuming process to be confident that all salient information has been identified and considered. Maybe this new systematic review of generic multidimensional patient-reported outcome measures (PROMs) for children with neurodisability can help me? As Janssens et al. suggest, generic PROMs can have several advantages over condition-specific measures: comparison with normative samples of peers and other childhood conditions; measurement of rare conditions in the absence of a condition-specific measure; and apposite for evaluation and economic planning of health services. Because they are ‘generic’, they may also be at risk of sometimes missing important aspects of health status and changes in health. Unfortunately, none of the reviewed measures had received comprehensive evaluation. The authors state that it is difficult to make recommendations, though the DISABKIDS appeared to have the more robust measurement properties. As a clinician I want to know that a test is effective in measuring the intended construct, that it shows good reliability, and has the ability to detect change when it is present. This often equates to very small changes in health or quality of life in children with neurodisability, especially those who have more severe impairments, but these small changes may make a significant difference to participation for the child. Two of the least evaluated properties were responsiveness and measurement error. In their absence, the authors suggest that professionals should ‘appraise whether the aspects of health covered by the tools and the response options to questions suggest that these are ‘likely’ to change in their specific context of application’. From experience, this requires detailed scrutiny of potentially large numbers of items, which can be a very helpful process, but can also be a challenge to achieve in the context of a busy clinical setting. None of the PROMs included all key domains of health outcomes for neurodisability identified as important by families and clinicians. In addition, there was a lack of content validity studies (4/18 tests), which is surprising given that these are ‘patient’ reported outcome measures. Content validation from the user’s perspective is vital to ensure the named construct is fully and adequately represented. As the PROMs are intended to address patients with a variety of neurological conditions, they may be at risk of missing aspects that might be important to patients within the intended population. Omitted aspects that appear potentially important may not in and of themselves be an issue if users have arrived at consensus about what is essential to include. Other information on content validity might have been available from initial research during test development within the test manuals, but the authors understandably chose not to include this because it would not have been subject to peer review. Another concern is that some of the PROMs were tested for several psychometric properties but only in one type of neurodisability, such as attention-deficit-hyperactivity disorder. Is it possible therefore to assume that the test will behave in a similar way when used with children with all types of neurodisability, for example those who have more severe impairments? So are we now better able to identify a robust PROM to suit the purposes of families, clinicians, researchers, and health economists involved in neurodisability? This review, the previous systematic review by the authors of PROMs for children, and the study identifying important health domains in neurodisability give clarity as to where future research should be focussed: responsiveness studies including minimally clinically important difference, minimal detectable change and measurement error; evaluation of measures across several conditions to determine the extent of the variance; feasibility and acceptability to users. So I think there is still some scope for improvement.