Noelle E Carlozzi1, E A Hahn2, S A Frank3, J S Perlmutter4,5, N D Downing6, M K McCormack7,8, S Barton4, M A Nance9, S G Schilling10. 1. Department of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 48109-2800, USA. carlozzi@med.umich.edu. 2. Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA. 3. Beth Israel Deaconess Medical Center, Boston, MA, USA. 4. Department of Neurology, Washington University School of Medicine, St. Louis, MO, USA. 5. Departments of Radiology and Neuroscience, Program in Occupational Therapy and Program in Physical Therapy, Washington University, St. Louis, MO, USA. 6. Forensic Health Care College of Nursing, Texas A&M University, College Station, TX, USA. 7. Department of Psychiatry, Rutgers University-Robert Wood Johnson Medical School, Brunswick, NJ, USA. 8. Piscataway and Department of Pathology, Rowan University-SOM, Stratford, NJ, USA. 9. Hennepin County Medical Center, Minneapolis, MN, USA. 10. Institute for Social Research, University of Michigan, Ann Arbor, MI, USA.
Abstract
BACKGROUND: Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life. AIM: The purpose of this study was to develop a new measure to evaluate end of life planning. DESIGN: We 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 Huntington disease. Item response theory and differential item functioning analyses were utilized to examine the psychometric properties of items; exploratory factor analysis was used to establish meaningful subscales. PARTICIPANTS: Participants included 508 individuals with pre-manifest or manifest Huntington disease. RESULTS: Item response theory supported the retention of all 16 items on the huntington disease quality of life ("HDQLIFE") end of life planning measure. Exploratory factor analysis supported a four-factor structure: legal planning, financial planning, preferences for hospice care, and preferences for conditions (locations, surroundings, etc.) 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 four subscale scores that reflect the different end of life planning constructs. CONCLUSIONS: The 16-item HDQLIFE end of life planning measure demonstrates adequate psychometric properties; it may be a useful tool for clinicians to clarify patients' preferences about end of life care.
BACKGROUND:Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life. AIM: The purpose of this study was to develop a new measure to evaluate end of life planning. DESIGN: We 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 Huntington disease. Item response theory and differential item functioning analyses were utilized to examine the psychometric properties of items; exploratory factor analysis was used to establish meaningful subscales. PARTICIPANTS: Participants included 508 individuals with pre-manifest or manifest Huntington disease. RESULTS: Item response theory supported the retention of all 16 items on the huntington disease quality of life ("HDQLIFE") end of life planning measure. Exploratory factor analysis supported a four-factor structure: legal planning, financial planning, preferences for hospice care, and preferences for conditions (locations, surroundings, etc.) 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 four subscale scores that reflect the different end of life planning constructs. CONCLUSIONS: The 16-item HDQLIFE end of life planning measure demonstrates adequate psychometric properties; it may be a useful tool for clinicians to clarify patients' preferences about end of life care.
Entities:
Keywords:
End of life; HDQLIFE; HDQLIFE Site Investigators and Coordinators; Health-related quality of life; Huntington disease; Patient-reported outcome (PRO)
Authors: N E Carlozzi; N R Downing; S G Schilling; J-S Lai; S M Goodnight; J A Miner; S A Frank Journal: Qual Life Res Date: 2016-05-03 Impact factor: 4.147
Authors: N E Carlozzi; S G Schilling; J-S Lai; J S Perlmutter; M A Nance; J F Waljee; J A Miner; S K Barton; S M Goodnight; P Dayalu Journal: Qual Life Res Date: 2016-04-01 Impact factor: 4.147
Authors: Noelle E Carlozzi; Nicholas R Boileau; Jane S Paulsen; Joel S Perlmutter; Jin-Shei Lai; Elizabeth A Hahn; Michael K McCormack; Martha A Nance; David Cella; Stacey K Barton; Nancy R Downing Journal: J Neurol Date: 2019-06-12 Impact factor: 4.849
Authors: Leonard L Sokol; Jonathan P Troost; Benzi M Kluger; Allison J Applebaum; Jane S Paulsen; Danny Bega; Samuel Frank; Joshua M Hauser; Nicholas R Boileau; Colin A Depp; David Cella; Noelle E Carlozzi Journal: Ann Clin Transl Neurol Date: 2021-07-20 Impact factor: 4.511