PROs in routine practice

PROs data are being used for service evaluation and commissioning of care in several countries. The National Health Service (NHS) in England introduced the routine collection of PROMs data in 2009 (Chart 1, see further down) and in the Netherlands, PROs data are being collected alongside patient experience information to inform purchasers of care.

For more information, see the following resources:

• https://www.england.nhs.uk/statistics/statistical-work-areas/proms/
• http://www.hscic.gov.uk/proms
• https://www.kingsfund.org.uk/sites/files/kf/Getting-the-most-out-of-PROMs-Nancy-Devlin-John-Appleby-Kings-Fund-March-2010.pdf
• http://www.physiotherapyjournal.com/article/S0031-9406(14)00113-8/fulltext

The use of individual PRO data can help provide the clinicians with valuable information regarding the patient’s perspective of the impact of the disease and its treatment, ensuring:

(i) the care plan remains focused on those issues important to the patient.

(ii) the patient feels/is actively involved in the development of both the initial and subsequent updated versions of their care plan

(iii) the patient receives tailored feedback/information which can support self-management.

(iv) the clinician receives detailed information which they may use to provide a more complete picture of patient’s psychological/physical needs to guide management, and to identify the point at which additional support may be required.

With recent advances in technology, there has been considerable interest in the use of electronic PROMs (ePROMs) for the routine monitoring of patients with long-term conditions. ePROMs offer patients an ‘electronic’ method of data entry – e.g. web-based, via smartphone or tablet devices, via interactive telephone systems, or in some cases using text-recognition software to assimilate scanned paper questionnaires – and give clinicians a flexible platform with which they may view PROM data.

ePROMs offer patients the option of inputting data at a time and place (and via a platform) that is convenient to them, and provide clinicians with detailed health-related quality of life (HRQOL) and symptom data both in-clinic and between scheduled appointments via home/remote ePROM data capture.

A recent RCT, conducted in an oncology setting in the US, demonstrated that ePROM use is associated with improved HRQL, reduced A&E visits, reduced hospitalisations, and superior quality-adjusted survival.

Other evidence suggests the use of ePROMs in routine care may:

• Aid patient-provider communication and support shared decision-making.
• Improve patient activation and help patients to feel more involved/empowered in decisions around their care.
• Improve the accuracy of symptom assessment and enhance symptom management.
• Enhance patient education and self-management.
• Maximise patient safety.

For further information about using PROs to support routine the care of patients see the excellent guide produced by the International Society for Quality of Life Research (ISOQOL). The guide outlines several key considerations in developing systems to collect PROs in routine clinical care, including:

• The importance of spending time to define the purpose of routine PRO collection and the target population.
• The need to select the right tool for the right job.
• How frequently will patients be asked to complete PROs and will collection be solely clinic-based or remote (between clinics)?
• How will real-time scores be collated, presented and acted upon? What will be the threshold for action? What decision rules will be in place?
• What level of training will clinicians/patients require to utilise the system, interpret the results and respond to alerts?