Patient reported outcomes (PROMs) based recommendation in the clinical guidance for the management of chronic conditions in the United Kingdom

Problem

The use of Patient Reported Outcomes (PROMs) in clinical practice represents a promising potential application for improving the delivery of patient centred care. Current clinical practice in the UK is informed by evidence based standards developed by the National Institute for Health and Care Excellence (NICE) and covers both clinical practice guidelines and quality indicators, yet the extent to which PROMs feature in this guidance is not known. This aim of this project was to investigate what clinical guidance is available linking PROs to the management of selected chronic conditions.

Approach

Six chronic conditions were selected covering a wide range of impacts on symptoms and functioning, comprising both physical and mental health, and clinical progression: asthma, COPD, diabetes, heart failure, depression, and osteoarthritis (hip and/or knee). All available guidance (clinical practice guidelines and quality indicators) in the NICE portal (https://www.nice.org.uk/guidance) was systematically searched. For asthma, no overarching clinical practice guideline (CPG) was identified in NICE and the British Thoracic Society guideline was selected instead. For each condition and type of guidance, any mention of Patient Reported Outcome (PRO) constructs, as per a published model of PROs integrating the Wilson & Cleary Model and the WHO International Classification of Functioning (Valderas J.M. & Alonso J. Qual Life Res 2008), was extracted verbatim by the two authors. The information extracted included: the type of information available, named PROM instruments (if available) and whether recommendations were explicit in linking PROM scores to the management of conditions.

Findings

The PRO construct identified included symptoms, functional status, and health related quality of life. Potentially relevant PROMs were identified for all conditions (ranging from 3 to 7), except for diabetes and heart failure. The most frequent recommendation for the use of PROMs was for assessing the clinical status of patients (all, except for diabetes and heart failure) and there were further recommendations for informing and evaluating treatment in depression and osteoarthritis. Interventions for improving PROs were specifically identified for asthma, COPD and osteoarthritis. COPD was an exception in that PROM scores (MRC dyspnoea scale) were explicitly linked to management options.

Consequences

There is limited information available in current UK clinical guidance linking PROM information with specific advice for the management of the six selected chronic conditions. While it is positive that a number of named PROMs have been identified, recommendations in relation to their use for informing and evaluating treatment are both infrequent and non-specific. This represents a significant barrier to PROMs becoming a routine part of Primary Care in the UK. Efforts should be focused on providing explicit evidence based recommendations supporting the integration of PROMs into routine practice.