# Validity and Sensitivity to Change of a Self‐Report Quality of Life Measure in Patients With Korsakoff's Syndrome

## TL;DR

This study introduces a self-report quality of life measure for patients with Korsakoff's syndrome and validates it against proxy reports and other tools.

## Contribution

The development and validation of the QUALIKO-SR, a self-report quality of life instrument for patients with Korsakoff's syndrome.

## Key findings

- Self- and proxy-reported quality of life scores differed on subscales like Negative Affect and Social Isolation.
- QUALIKO-SR scores were positively associated with the MANSA-16 but not with cognitive impairment severity measured by MoCA.
- Caregivers reported improvements in several quality of life domains over time, while self-reports remained stable.

## Abstract

Assessing (self‐reported) quality of life (QoL) in patients with Korsakoff's syndrome (KS) is important to gain insight into these patients' well‐being and to optimize their care in long‐term care facilities. In this study, we describe the development of the QUALIKO‐Self Report (QUALIKO‐SR), an instrument for objectifying self‐reported QoL in patients with KS. Next, we compared the QUALIKO‐SR scores with the scores on the QUALIKO‐Proxy Version (QUALIKO‐PV) and examined changes in QoL over time. Finally, we assessed the convergent validity and investigated whether QUALIKO‐SR scores were related to the severity of the cognitive impairments.

The study took place in specialized long‐term care facilities providing care for patients with KS. 116 patients with alcoholic KS participated in this study. The QUALIKO‐SR was developed and validated against the QUALIKO‐PV, the Manchester Short Assessment of Quality of Life (MANSA‐16), and the Montreal Cognitive Assessment 8.1 (MoCA).

Significant differences were found between self‐ and proxy reported QoL on the subscales Negative Affect, Social Isolation, and Feeling at Home. No significant differences were found on the other subscales. QUALIKO‐SR scores did not significantly vary over time. However, caregivers reported significant improvements in Care Relationships, Autonomy, Restless Tense Behavior, Social Isolation, and Feeling at Home over time. A significant, positive association was found between the QUALIKO‐SR and the MANSA‐16. No significant correlations were found between the QUALIKO‐SR and the MoCA.

This study describes the development and validation of a self‐report instrument for objectifying QoL in patients with KS living in 24‐h care facilities, the QUALIKO‐SR. Measuring QoL in patients with severe cognitive impairments, such as patients with KS, is complex and we advise to include both self‐report and proxy‐report measures in future studies as well as in clinical practice. The availability of the QUALIKO‐SR and QUALIKO‐PV encourages researchers and clinicians to do so in patients with KS.