Outcome measures

Outcome measures and data collection

These resources provide further information about measuring outcomes and capturing the perspectives of people for whom the ability to self-report may be limited.

General resources

NIHR SSCR Capacity-building
Webinar Recording: Inclusion of people who
cannot self-report

NIHR SSCR Capacity-building Webinar Recording: Dementia (including interviewing people living with dementia in social care research)

NIHR SSCR Methods Review Interviewing people living with dementia in social care research

Additional specific resources

Measuring health-related quality of life of care home residents

Measuring health-related quality of life of care home residents: comparison of self-report with staff proxy responses

Measuring personhood, well-being, and quality of life outcomes for care home residents

Measurement recommendations for care outcomes for care home residents, focusing on well-being, quality of life, and personhood

Structured observational research
in services for people with learning disabilities

Structured observations may be useful in circumstances where people are unable to answer questions and proxy respondents may not be sufficiently accurate sources of data.

Methods for enhancing communication with people with moderate-severe dementia to facilitate inclusion in research

This study aims to identify methods, tools and approaches that could facilitate meaningful communication with people with moderate-to-severe dementia and support the inclusion of their perspectives in research.

Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice

This study aimed to explore the experiences of researchers working on dementia trials in care homes about best practice in data collection with this group and identify best practices to assist design of future trials

A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults

This review aimed to identify published studies reporting adapted communication approaches for measuring QoL, the methodology used in their development and validation among adult populations.