PMID- 31253494
OWN - NLM
STAT- MEDLINE
DCOM- 20200629
LR  - 20231014
IS  - 1873-5126 (Electronic)
IS  - 1353-8020 (Print)
IS  - 1353-8020 (Linking)
VI  - 65
DP  - 2019 Aug
TI  - Measuring quality of life in palliative care for Parkinson's disease: A 
      clinimetric comparison.
PG  - 172-177
LID - S1353-8020(19)30281-0 [pii]
LID - 10.1016/j.parkreldis.2019.06.018 [doi]
AB  - INTRODUCTION: Quality of life (QOL) assessments allow for more complete 
      evaluation of patients' lived experiences in relation to chronic conditions, such 
      as Parkinson's disease (PD). In palliative care, such instruments are vital to 
      ensure QOL issues are catalogued and addressed for patients. However, little is 
      known regarding the psychometric properties of quality of life scales for use in 
      palliative care for PD, specifically. METHODS: 210 participants with parkinsonian 
      disorders, who participated in a larger palliative intervention clinical trial, 
      completed four quality of life scales (PDQ-39, PROMIS-29, QOL-AD, and McGill QOL) 
      at baseline and post-intervention. Psychometric properties, including internal 
      consistency and concurrent validity, were examined. Factor analyses were 
      performed to evaluate relationships between scale items. Minimal clinically 
      important differences (MCID) and responsiveness were calculated for each scale. 
      RESULTS: All scales demonstrated good internal consistency and concurrent 
      validity. Factor analyses revealed few deviations from the defined subdomains of 
      the scales. Mean absolute MCID values were estimated at 12.7, 10.9, 3.9, and 18.9 
      for PDQ-39, PROMIS-29, QOL-AD, and McGill QOL, respectively. The PDQ-39 and 
      PROMIS-29 demonstrated higher responsiveness to palliative intervention, while 
      the QOL-AD was more responsive in the control group. CONCLUSIONS: The PDQ-39, 
      PROMIS-29, QOL-AD, and McGill QOL are all valid for use in PD palliative care, 
      though subdomains of the scales in this population may differ slightly from those 
      initially defined. We recommend the use of PDQ-39 and PROMIS-29 as outcome 
      measures in clinical trials for palliative care in PD, though the QOL-AD may be 
      superior for tracking disease progression.
CI  - Copyright (c) 2019 Elsevier Ltd. All rights reserved.
FAU - Holden, Samantha K
AU  - Holden SK
AD  - Department of Neurology, University of Colorado School of Medicine, Aurora, CO, 
      USA. Electronic address: samantha.holden@ucdenver.edu.
FAU - Koljack, Claire E
AU  - Koljack CE
AD  - Department of Neurology, University of Colorado School of Medicine, Aurora, CO, 
      USA.
FAU - Prizer, Lindsay P
AU  - Prizer LP
AD  - Department of Medicine, Emory University, Atlanta, GA, USA.
FAU - Sillau, Stefan H
AU  - Sillau SH
AD  - Department of Neurology, University of Colorado School of Medicine, Aurora, CO, 
      USA.
FAU - Miyasaki, Janis M
AU  - Miyasaki JM
AD  - Department of Medicine, Division of Neurology, University of Alberta, Edmonton, 
      Canada.
FAU - Kluger, Benzi M
AU  - Kluger BM
AD  - Department of Neurology, University of Colorado School of Medicine, Aurora, CO, 
      USA.
LA  - eng
GR  - IHS-1408-20134/PCORI_/Patient-Centered Outcomes Research Institute/United States
GR  - L30 NS103315/NS/NINDS NIH HHS/United States
PT  - Comparative Study
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
DEP - 20190623
PL  - England
TA  - Parkinsonism Relat Disord
JT  - Parkinsonism & related disorders
JID - 9513583
SB  - IM
MH  - Aged
MH  - Aged, 80 and over
MH  - *Disease Progression
MH  - Female
MH  - Humans
MH  - Lewy Body Disease/therapy
MH  - Male
MH  - Middle Aged
MH  - Multiple System Atrophy/therapy
MH  - Outcome Assessment, Health Care/*standards
MH  - *Palliative Care
MH  - Parkinson Disease/*therapy
MH  - Parkinsonian Disorders/*therapy
MH  - Patient Outcome Assessment
MH  - Psychometrics/instrumentation/methods/*standards
MH  - *Quality of Life
MH  - Reproducibility of Results
MH  - Supranuclear Palsy, Progressive/therapy
PMC - PMC6774894
MID - NIHMS1533185
OTO - NOTNLM
OT  - Outcome measures
OT  - Palliative care
OT  - Parkinson disease
OT  - Psychometrics
OT  - Quality of life
COIS- Conflicts of interest: none
EDAT- 2019/06/30 06:00
MHDA- 2020/07/01 06:00
PMCR- 2020/08/01
CRDT- 2019/06/30 06:00
PHST- 2019/04/24 00:00 [received]
PHST- 2019/06/14 00:00 [revised]
PHST- 2019/06/22 00:00 [accepted]
PHST- 2019/06/30 06:00 [pubmed]
PHST- 2020/07/01 06:00 [medline]
PHST- 2019/06/30 06:00 [entrez]
PHST- 2020/08/01 00:00 [pmc-release]
AID - S1353-8020(19)30281-0 [pii]
AID - 10.1016/j.parkreldis.2019.06.018 [doi]
PST - ppublish
SO  - Parkinsonism Relat Disord. 2019 Aug;65:172-177. doi: 
      10.1016/j.parkreldis.2019.06.018. Epub 2019 Jun 23.