The 16-item Huntington disease quality of life (HDQLIFE) end of life planning measure demonstrates adequate psychometric properties, according to a recent study, and may be a useful tool for clinicians to clarify patients’ preferences about end of life care. Researchers conducted qualitative focus groups, solicited expert input, and completed a literature review to develop a 16-item measure to evaluate important aspects of end of life planning for HD. Participants included 508 individuals with pre-manifest or manifest HD. They found:
- Item response theory supported the retention of all 16 items on the HDQLIFE end of life planning measure.
- Exploratory factor analysis supported a 4-factor structure: legal planning, financial planning, preferences for hospice care, and preferences for conditions at the time of death.
- Although a handful of items exhibited some evidence of differential item functioning, these items were retained due to their relevant clinical content.
- The final 16-item scale includes an overall total score and 4 subscale scores that reflect the different end of life planning constructs.
Carlozzi NE, Hahn EA, Frank SA, et al. A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning. J Neurology. 2018;265(1):98-107. doi:10.1007/s00415-017-8677-7.
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