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.
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http://dx.doi.org/10.1016/j.parkreldis.2019.06.018 | DOI Listing |
BMC Palliat Care
January 2025
Department of Nursing, Taizhou Hospital of Zhejiang Province Affiliated to Wenzhou Medical University, No. 599 Dayang East Road, Linhai, Zhejiang, 317000, China.
Background: Delirium frequently occurs in palliative care settings, yet its screening, identification, and management remain suboptimal in clinical practice. This review aims to elucidate the barriers preventing healthcare professionals from effectively screening, recognizing, and managing delirium in adult patients receiving specialist palliative care, with the goal of developing strategies to enhance clinical practice.
Methods: A mixed-methods systematic review was conducted (PROSPERO: CRD42024563666).
BMC Palliat Care
January 2025
Palliative Care Unit, National Cancer Institute, Rio de Janeiro, Brazil.
Objective: To compare the sociodemographic and clinical profiles of patients with advanced cancer admitted to a tertiary palliative care unit before and during the COVID-19 pandemic.
Methods: This is an analysis of data from patients receiving care before (10/21/2019 to 03/16/2020) and during (09/23/2020 to 08/26/2021) the COVID-19 pandemic. Sociodemographic and clinical data were evaluated.
BMC Palliat Care
January 2025
Institute on Aging and Lifelong Health, University of Victoria, 3800 Finnerty Road, Victoria, BC, V8P 5C2, Canada.
Background: While an extensive body of research in palliative care exists on the experiences of grief and bereavement among family caregivers, much of this research is based on normative assumptions of who family caregivers are - housed, financially stable, and with extended family and/or friends to draw on for support. Research shows that in contexts of social disadvantage(e.g.
View Article and Find Full Text PDFBMC Cancer
January 2025
Peter MacCallum Cancer Centre, Parkville, Victoria, Australia.
Background: People with malignancy of undefined primary origin (MUO) have a poor prognosis and may undergo a protracted diagnostic workup causing patient distress and high cancer related costs. Not having a primary diagnosis limits timely site-specific treatment and access to precision medicine. There is a need to improve the diagnostic process, and healthcare delivery and support for these patients.
View Article and Find Full Text PDFBr J Gen Pract
January 2025
University of Nottingham School of Health Sciences, Nottingham, United Kingdom.
Background A growing literature examines the way two changes in primary care - the shift towards remote working, and the diversification of practice teams to incorporate, for instance, physician associates and paramedics - affect patient care within the practice. However, little is known about these changes' effects on community nurses. Aim To explore community nurses' experiences of delivering palliative care in the context of GPs' new ways of working.
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