Making quality of life measures work for everyone in mental health services
Every community mental health team in England uses the Recovering Quality of Life (ReQoL) questionnaire to track how patients are doing. It is a mandated measure – the NHS requires it. But for people with learning disabilities, autism, or cognitive difficulties, the standard ReQoL often does not work. The questions can be hard to understand, the layout confusing, the concepts abstract. Staff know this. Many have said so. Yet this sizeable group of patients has been left without a measure that captures their experience in their own words.
That gap is about to become a much bigger problem. The NHS 10 Year Health Plan commits to collecting patient-reported outcome measures universally by 2029 to evaluate quality of care. If the tools themselves exclude people, universal collection simply entrenches existing inequalities.
Our approach and partners
Researchers at the University of Oxford and the University of Sheffield set out to adapt ReQoL so it works for people who struggle with the original – not just those with learning disabilities, but anyone facing cognitive or communication barriers in mental health services.
Working with Sheffield Health and Social Care NHS Foundation Trust, the Boaz Project (a Hampshire-based learning disability charity), and other organisations, the team ran workshops and a survey with 24 clinicians, researchers, and other professionals. The aim was straightforward: confirm the need and agree the right approach.
The answer was clear. Rather than creating a separate tool for each population, stakeholders wanted a single inclusive version of ReQoL – one that works across learning disabilities, neurodiversity, autism, and cognitive difficulties. Two measures, not many: the standard ReQoL and an accessible alternative.
A graphic designer then worked with the team to produce a draft adapted version. The wording stays close to the original – comparability matters – but the layout is clearer and illustrations now help convey abstract concepts like wellbeing and daily functioning. A companion guide for staff supporting patients to complete the measure has also been developed. Both the measure and the guide are being refined through patient and public involvement.
What we found – and why it matters
- Clinicians confirmed the problem is real and widespread. Twenty-four professionals across mental health and learning disability services agreed: the standard ReQoL does not meet the needs of a significant proportion of their patients.
- One inclusive measure is better than many separate ones. Stakeholders favoured a single accessible version rather than population-specific adaptations – a pragmatic solution that simplifies use for busy NHS services.
- Small design changes can make a big difference. Keeping the wording comparable to the original while improving layout and adding visual illustrations preserves the ability to compare results across patient groups.
The adapted measure has been presented at the International Conference on Integrated Care (Birmingham, 2026), generating interest from services facing the same challenge.
What this means
If the NHS is to measure quality of life universally by 2029, the measurement tools must be accessible to everyone. Right now, people with learning disabilities, autism, and cognitive difficulties risk being counted but not heard – their outcomes recorded with instruments that do not reflect their experience. An inclusive ReQoL would let services track outcomes meaningfully for these groups, evaluate care on equal terms, and identify where support is falling short.
What needs to happen next
The adapted ReQoL is a promising draft, not a finished product. Three things are needed. First, cognitive interviews with people with learning disabilities, neurodivergent people, and those with cognitive difficulties – to test whether the adapted version genuinely works in their hands. Second, a validation study with approximately 500 respondents across these populations to establish that the measure is psychometrically sound. Third, funding: the team is developing an NIHR Research for Patient Benefit application with the University of Sheffield and Sheffield Health and Social Care NHS Foundation Trust to make this happen.
Lead researcher:
Dr Michele Peters, Nuffield Department of Population Health, University of Oxford
Contact: Michele.peters@dph.ox.ac.uk
ARC OxTV theme: Mental Health
Alignment with the 10 Year Health Plan for England:
The plan commits to universal collection of patient-reported outcome measures by 2029. Achieving this requires inclusive, accessible tools – particularly for groups historically excluded from measure development. This work directly supports reducing inequalities in how care quality is measured and evaluated.
NIHR narrative themes:
- Impact – Enabling meaningful quality of life measurement for people currently underserved by standard tools in community mental health
- Inclusion – Co-producing an accessible measure with and for people with learning disabilities, neurodivergent people, and those with cognitive difficulties
- Innovation – Developing a single inclusive alternative rather than multiple population-specific adaptations, simplifying use across NHS services
Partners:
University of Sheffield; Sheffield Health and Social Care NHS Foundation Trust; Boaz Project (Hampshire)
What continues beyond ARC funding:
The team is developing an NIHR Research for Patient Benefit grant application with the University of Sheffield and Sheffield Health and Social Care NHS Foundation Trust to validate the adapted ReQoL for use across NHS community mental health services.