Recovering quality of life
Recovery from mental health problems means being able to live a meaningful and fulfilling life, with or without symptoms, and this is defined by each individual. It’s rising beyond the problems. Understanding how we feel can help with this and can actually be more important to our quality of life. So, how can we measure and better understand our mental health?
Over the last 20 years there’s been an accelerating shift in the NHS and medical practice in the UK towards a focus on the views of patients, rather than relying solely on the judgements of clinicians. This has been important in the field of physical health but even more so when it comes to considering people’s views of their mental health.
When we visit the GP what do we expect? For a long time patients were asked a series of questions which were used to determine condition and diagnosis. The approach now, however, uses Patient Reported Outcome Measures – PROMs. There’s an abundance of mental health assessment measures based on this approach. They’re comprised of a series of questions designed to capture the patient’s views about their current state of mental health. However, many of these measures focus only on symptoms – for example, of depression or anxiety. Asking questions about such experiences are important, but measures that target only these experiences fail to capture equally meaningful aspects of people’s lives; for example, our sense of belonging or self-perception. And very few of these measures have actively engaged with people experiencing mental health issues.
But a team from the University of Sheffield led by Professor John Brazier from ScHARR took on this challenge. Together with colleagues from ScHARR – Dr Anju Keetharuth, Dr Jill Carlton, Dr Lizzie Taylor Buck and Janice Connell – and Professor Michael Barkham from the Department of Psychology, the team devised and successfully implemented a new PROM into the NHS. Named Recovering Quality of Life, or ReQoL, the new PROM focuses on improving patient’s quality of life rather than just treating the symptoms.
Professor Michael Barkham and Dr Anju Keetharuth
“Before ReQoL, patients would go and see their GP, explain their symptoms, and the GP would make an assessment,” explains Anju, “then on a follow up appointment they’d reassess the patient’s state and see if they’d improved.” This is fine providing the issues that are worrying a person are the ones being spoken about. Because the questions in ReQoL capture a broader range of issues, it is hoped that this will enable more meaningful assessments and also provide a review of the areas of a person’s life that are important to improving their quality of life. “ReQoL is giving service users a voice and this reflects that shift over the last 20 years,” says Michael.
So, what is the ReQoL tool and how does it work? There are two versions: one containing 10 items (ReQoL-10) and one 20 items (ReQoL-20), both of which ask questions about the patient’s experiences in the past seven days. The shorter version captures six themes of experience that, based on past studies and users’ feedback, were considered central in trying to capture a person’s movement toward recovery. The themes are: belonging and relationships; activity; choice, control and autonomy; hope; self-perception, and wellbeing. In addition to the 10 items, it also includes a question on physical health as service users have indicated this as being a very important aspect of their quality of life.
The ReQoL-20 adds a further 10 items that focus primarily on aspects of wellbeing to gain a deeper understanding on how the service user is feeling (e.g., “I found it hard to concentrate”, “I had problems with my sleep”). But whichever version is used, those initial 10 items tapping the six themes ensure that people’s thoughts and feelings about more than their symptoms are captured. And importantly, some of the questions are framed positively (e.g., “I felt happy”) while others are framed negatively (e.g., “I felt unable to cope”). Including both is important so as not to present the experience as either all positive or all negative.
ReQoL has also been designed to be used in evaluating the cost effectiveness of interventions. In the UK, decisions about whether or not an intervention or treatment is funded by the NHS are made by the National Institute for Health and Care Excellence (NICE). They make the decision by comparing the costs and benefits of the proposed intervention or treatment, where the benefits are captured by a measure that combines health gains, quality of life, and years of life. ReQoL is such a measure. It adequately reflects the essence of what matters to service users and better captures the benefits of an intervention or treatment. Across the UK and abroad ReQoL is being used in a number of studies and trials to assess the cost effectiveness of interventions.
The development of ReQoL was informed by the views of 6,000 service users views. This detailed user perspective was balanced with an equal focus on measurement science to ensure that the measure was robust.
Our mission was to give people with mental health problems a voice and let them be the decision makers.
Dr Anju Keetharuth
The University of Sheffield School of Health and Related Science
“Our mission was to give people with mental health problems a voice and let them be the decision makers,” says Anju.
“It was only launched in 2016, but it’s already impressively embedded in the NHS,” says Michael. ReQoL is being completed by people in a third of NHS trusts in England and also overseas in countries ranging from Australia, Singapore and Canada. It has also been translated in six Indian languages, German, Dutch, Norwegian and Chinese.
The ReQoL measures are changing the way people who experience mental health problems are assessed and can help them to monitor their own progress. We’re no longer ignoring patient’s voices or simply ticking boxes in the assessment process. Patients can now audit and review their state, helping them make informed decisions on their road to recovery and improved quality of life. In an NHS that is presented as patient-led, ReQoL provides one tool for supporting this agenda.
This independent research was undertaken by the Policy Research Unit in Economic Evaluation of Health and Care Interventions (EEPRU) funded by the Department of Health Policy Research Programme. It was also part-funded by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Yorkshire and Humber (NIHR CLAHRC YH).