Guest Blog: Patient Reported Outcomes – The challenges still facing us

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Despite the increasing use of patient reported outcome measures (PROMs) across a range of clinical settings and research, there are a number of important issues that remain to be addressed before we can maximise the benefits from their use in clinical trials and real world studies including, for example, the need to ensure instruments, data collection and analysis is highly credible.

There must also be demonstrable evidence that PROMs have been developed with scientific rigour with proven reliability, validity and sensitivity to detect change where change is present as well as the need to make PROM data meaningful to those who need to be informed including, nurses, clinicians, commissioners, providers and policy makers. Data must be relevant, affordable and practical to collect and not affect the delivery of care in the process.

There is also a need to know more about how best PROMs can be embedded into the decision-making process and combine the derived data with other clinical information as well as explore ways to provide feedback as insightful information to enable sound clinical decision making.

A few initiatives to get you started

  1. Establish buy in from all those involved in the project. It is essential that every person involved in the process is in agreement. This will include in particular those who will be administering the PROM or who run the service in order to minimise disruption to the delivery of care process. Any potential obstacles should be resolved at this stage.
  2. Understand the big picture.
  • i. Determine exactly the purpose of the project. This will include defining the inputs and desired outcomes to be measured which are relevant to the patient and project in order to develop the measurement strategy.
  • ii. Can the desired outcome(s) be measured?
  • iii. Why these particular outcomes? Establishing the measured outcomes are essential and defining them to be ‘health status' ‘quality of life' or ‘health-related quality of life' etc.
  • iv. What action will follow once the PROM evidence is available and who are the key stakeholders involved?
  1. Identify the practicalities. Define exactly the patient group. How will the PROM be administered? Who will undertake the analysis?
  2. Selecting the appropriate PROM. This will combine a number of factors including development of the measurement strategy and a detailed and comprehensive review of the literature to identify the PROM. This is the point at which selection must be based on what the PROM is purported to measure which must be supported by a clear conceptual framework, its scientific and measurement qualities and whether it's possible to easily interpret the scores as to really what they mean. Selection must not be based on the name alone of the PROM or because it has been used in other studies.

Ultimately, we are only scratching the surface here when it comes to the implantation of a PROM. The key comes down to this: You have to plan for measurement. It is almost impossible to measure patient reported outcomes without a clear measurement strategy defining exactly the inputs and desired outcomes.

Dr Keith Meadows is founder and director of DHP Research & Consultancy Ltd



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