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Measuring health-related quality-of-life for Alzheimer’s disease using the general public

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Abstract

Purpose

Little research exists to indicate whether the general public can provide proxy health-related quality-of-life (HRQoL) estimates for persons with Alzheimer’s disease (AD). We investigated (1) whether the general public can differentiate between mild, moderate, and severe AD and (2) whether the general public’s proxy HRQoL estimates are correlated with current health status.

Methods

We conducted computer-assisted personal interviews. The computer randomly assigned each participant to read a vignette describing mild, moderate, or severe AD. Participants answered the EQ-5D-5L and Quality-of-life-Alzheimer’s Disease (QoL-AD), while imagining living in the health state described in their assigned vignette. Participants also answered the EQ-5D-5L based on their health state at the time of the interview.

Results

We interviewed 100 participants. EQ-5D-5L utilities were 0.7413 (mild), 0.6159 (moderate), and 0.4456 (severe) (P < 0.001). Mean QoL-AD scores were 32.5 (mild), 24.0 (moderate), and 21.8 (severe) (P < 0.0001 for severe vs. mild, moderate vs. mild; P > 0.05 for severe vs. moderate). Participants’ EQ-5D-5L utility scores were weakly correlated (r ≤ 0.28) across both administrations of the instrument.

Conclusions

The general public can differentiate between the three stages of AD, and their HRQoL estimates for AD are weakly correlated with their current health status.

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Abbreviations

AD:

Alzheimer’s disease

ADKT:

Alzheimer’s Disease Knowledge Test

ANOVA:

One-way analysis of variance

EQ-5D-5L:

Utility-based HRQoL instrument consisting of five dimensions and five response levels

HRQoL:

Health-related quality-of-life

QoL-AD:

Quality-of-life-Alzheimer’s disease

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Acknowledgments

Drs. Feng Xie and Mark Oremus are funded by a Career Scientist Award from the Ontario Ministry of Health and Long-term Care. Dr Mark Oremus is also funded by the McLaughlin Foundation Professorship in Population and Public Health.

Author information

Authors and Affiliations

  1. Programs for Assessment of Technology in Health (PATH) Research Institute, McMaster University, 25 Main Street West, Suite 2000, Hamilton, ON, L8P 1H1, Canada

    Feng Xie & Kathryn Gaebel

  2. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada

    Feng Xie & Mark Oremus

  3. McMaster Evidence-based Practice Centre, McMaster University, Hamilton, ON, Canada

    Mark Oremus

  4. Centre for Evaluation of Medicines, St. Joseph’s Healthcare, Hamilton, ON, Canada

    Kathryn Gaebel

Authors
  1. Feng Xie
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  2. Mark Oremus
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  3. Kathryn Gaebel
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Corresponding author

Correspondence to Feng Xie.

Appendix: Alzheimer’s disease vignettes

Appendix: Alzheimer’s disease vignettes

Mild

If you have Alzheimer’s disease, then you might forget current or recent events. For example, you might not remember that a federal election is going on even though you regularly watch the news; you might forget that Team Canada won the Olympic gold hockey medal even though you watched the game. You might also forget personal details about yourself, such as the name of your last employer. Your ability to concentrate may decrease and you might start having difficulty driving, handling your personal finances, or planning leisure activities such as dinner parties or a vacation. You will still be aware of the day and time, as well as your surroundings. You will also recognize familiar faces and you will be able to travel to familiar locations such as the supermarket.

Moderate

If you have Alzheimer’s disease, then you will be unable to remember some important things like your current address or telephone number, the names of close relatives such as your grandchildren, or the name of the high school or university from which you graduated. You will remember your own name, and you will usually remember the names of your spouse and children. Sometimes you may not know today’s date, what day of the week it is, or whether you are in the spring, summer, fall, or winter. You may also occasionally forget where you are. For example, you might be in a shopping mall close to home, but you will not know which mall or how to get home. You might need someone to help you choose the proper clothing to wear, but you will not need help with eating or using the toilet.

Severe

If you have Alzheimer’s disease, then you might live at home, but you will need full-time help with eating, dressing, and bathing. Also, the people who are caring for you might find their job difficult because you experience periods of agitated behavior. For example, you might see yourself in the bathroom mirror and you might begin having an aggressive conversation with your reflection. You might even start yelling at yourself. You might also struggle with the person who is trying to bathe or dress you, even if this person is your spouse or child.

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Xie, F., Oremus, M. & Gaebel, K. Measuring health-related quality-of-life for Alzheimer’s disease using the general public. Qual Life Res 21, 593–601 (2012). https://doi.org/10.1007/s11136-011-9966-8

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