Introduction: Many patients with amyotrophic lateral sclerosis (ALS) receive palliative care (PC) very late or not at all. The impact of PC on patients with ALS and caregivers has not been quantified. Study goals included (1) measuring the impact of early PC on quality of life and mood of patients/caregivers and (2) describing patient/caregiver satisfaction with PC.
Methods: The study was a non-randomized, prospective feasibility study of patients with ALS being treated at The Ottawa Hospital ALS Clinic and their caregivers. Exclusion criteria were age < 18 years, inability to complete questionnaires, and prior receipt of PC. The ALS Specific Quality of Life-Revised (ALSSQOL-R) questionnaire (patients only) and Hospital Anxiety and Depression Scale (HADS) were completed at regular intervals for up to 2 years. Patients accepting a PC consultation completed a post-PC satisfaction survey. Primary outcome measures included ALSSQOL-R and HADS scores compared before and after PC consultation, and between groups receiving and not receiving a PC consultation. Secondary outcome measures included responses on the post-PC satisfaction survey (1 = strongly disagree, 5 = strongly agree).
Results: 39 patients with ALS (age 66 ± 10 years, median time from diagnosis = 6 months) and 22 caregivers were enrolled. 32 patients had a PC consultation (30 were virtual). Patients and caregivers agreed with statements that the PC consult was helpful (mean ± SD = 4.54 ± 0.60, range = 3-5) and they would recommend PC to others with ALS (4.59 ± 0.59, range = 3-5). Participants disagreed with statements that the consult would have been better later in disease course (1.87 ± 0.80, range = 1-4) and that it took too much time/energy (1.44 ± 0.85, range = 1-4). Average ALSSQOL-R scores worsened significantly over time. HADS and ALSSQOL-R scores did not significantly differ between groups receiving and not receiving PC.
Conclusion: Patients with ALS and their caregivers found virtual PC consultations beneficial irrespective of disease duration or severity. Offering routine PC to all patients with ALS is feasible and should be considered as part of standard care.
Clinical Trial Registration: https://clinicaltrials.gov/ct2/show/NCT04257760, identifier NCT04257760.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10533918 | PMC |
| http://dx.doi.org/10.3389/fmed.2023.1204816 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Development of an Innovative Decision-Aid to Better Align Patients' Implantable Cardioverter Defibrillator Shock Status With Goals of Care.
Circ Cardiovasc Qual Outcomes
January 2025
Department of Internal Medicine, Division of Cardiology, University of Texas Southwestern Medical Center, Dallas (S.G., Nimesh Patel, M.K., M.S.S.).
An implantable system for opioid safety.
Device
October 2024
Division of Gastroenterology, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Cambridge, MA 02139, USA.
Naloxone can effectively rescue victims from opioid overdose, but less than 5% survive due to delayed or absent first responder intervention. Current overdose reversal systems face key limitations, including low user adherence, false positive detection, and slow antidote delivery. Here, we describe a subcutaneously implanted robotic first responder to overcome these challenges.
View Article and Find Full Text PDFFrom skin to heart: The rare journey of pleomorphic dermal sarcoma metastasis.
Radiol Case Rep
March 2025
Department of Cardiology, Division of Specialist Medical Services, Gold Coast Hospital and Health Services, Southport, QLD 4215, Australia.
Cardiac tumours can be classified as neoplastic or non-neoplastic, with secondary tumours being significantly more common than primary ones. Among secondary tumours, melanoma has the highest propensity for cardiac involvement. Pleomorphic dermal sarcoma (PDS) is a rare skin neoplasm, with an estimated metastatic risk of 10% to 20%.
View Article and Find Full Text PDFDiagnostic Challenges and Insights Into Granulomatous Mastitis: A Systematic Review.
Cureus
December 2024
Oncology/Radiation Oncolgy, Tawam Hospital, Al Ain, ARE.
Granulomatous mastitis (GM) is a chronic inflammatory breast condition that presents significant diagnostic challenges due to its clinical and imaging similarities to malignancies. Accurate diagnosis is crucial to avoid unnecessary interventions and ensure effective management. A total of 1,216 articles were initially identified through a comprehensive database search.
View Article and Find Full Text PDFEmergency department early mortality model for patients admitted after presenting to a tertiary medical center emergency department.
Acad Emerg Med
January 2025
Department of Emergency Medicine, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA.
Objectives: Identifying patients in the emergency department (ED) at higher risk for in-hospital mortality can inform shared decision making and goals-of-care discussions. Electronic health record systems allow for integrated multivariable logistic regression (LR) modeling, which can provide early predictions of mortality risk in time for crucial decision making during a patient's initial care. Many commonly used LR models require blood gas analysis values, which are not frequently obtained in the ED.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!