Quality of Life Metrics

Adira asked a simple question: how do we measure what really matters to people living with neurodegenerative disease? This is the research project that answered it.

Five Precious Resources People Want to Preserve

There are no cures for the five NDs Adira focused on. Programs improving quality of life are not a secondary concern, they are the work.

Through years of listening, Adira heard the same five things named again and again.

Time
Money
Energy
Confidence
Connection

For people most impacted by neurodegenerative diseases, navigating an incurable diagnosis is a near-constant assault on all five.

A Landscape Review of 50 Assessment Tools

In 2021, Adira commissioned a comprehensive review of the existing quality of life assessment tools used around the world. The goal: understand how the field currently defined and measured QOL, identify gaps, and propose a shared standard.

50+

tools reviewed

5

QOL areas proposed

Download the full report

30+

organizations at July 2021 convening

A promotional graphic with a dark blue background, white text that reads 'People Want More: Time, Money, Energy, Confidence, and Connection.' Below, smaller text states, 'We collected and analyzed 50 assessment tools commonly used to evaluate quality of life to better understand the landscape of tools that exist and how they currently measure quality of life.' There are decorative red brushstrokes on the bottom right corner and part of a red button with white text that says 'View the Report' is visible at the bottom.

Authored by Lauren Ruiz and Zainab Mahmood, 2021.

✓ Where tools succeed

  • Energy and connection are the most-evaluated areas

  • Every tool analyzed asked questions aligned with these two areas

Where the Existing Tools Land

The research analyzed how well each of the 50 tools captured the five QOL areas. The findings revealed both strengths and gaps.

✗ Where tools fall short

  • Time, money, and confidence are under-evaluated

  • The field is either failing to capture impact, or failing to address these needs

Two Tools the Research Highlighted

From the 50 tools reviewed, two stood out for combining alignment with all five QOL areas, plain language, and minimal responder burden.

For people living with ND

WHODAS 2.0

World Health Organization's Disability Assessment Survey 2.0. Internationally validated, covers all five QOL areas.

For ND caregivers

KCSS

Kingston Caregiver Stress Scale. Aligned with all five QOL areas, focused on the caregiver experience.

The report did not recommend any single tool as the universal answer.
Instead, it provided a searchable library organized by which QOL areas each tool measured.

Standardizing the Question

The Quality of Life Metrics research was not just academic. Adira intended to use the framework immediately and over the long term.

Immediate: Adira and grantees would evaluate program impact in all five areas using tools from the library.

Long-term: Create a shared system of measures bringing QOL to the forefront of program evaluation across the field.

Findings were presented at Adira's inaugural Neurodegenerative Disease Congress in early 2022, where 51% of participants were people living with ND or their caregivers.

What Adira Asked the Field to Adopt

Even after Adira sunset, the five-area framework remains a durable tool.

Any organization measuring its impact on people with ND can ask:

If the answer to any of these is no, the framework points to where the work still needs to be done.

Read the full research and explore the library of assessment tools.

Download the Report
Other Research