Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.
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http://dx.doi.org/10.1177/10499091211049386 | DOI Listing |
J Appl Gerontol
January 2025
Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
We examined the associations between physical activity (PA)-measured through self-reported walking and vigorous activities-and pain occurrence (self-reported bothersome pain or frequent pain medication use), and persistent pain (pain occurring for two consecutive years). This analysis used a large, nationally representative sample of 2279 older adults from the National Health and Aging Trends Study of 2015-2018, and applied generalized estimating equation regression with propensity score weighting. Approximately 70% and 50% of the participants reported walking and vigorous activities respectively at baseline.
View Article and Find Full Text PDFBMJ Open Qual
December 2024
Conversaurus, Richmond, UK.
Communication is fundamental to effective healthcare. Misunderstandings can increase distress, risks and costs. Clean Language is a precision questioning technique-with specific Clean Language questions which minimise assumptions and bias.
View Article and Find Full Text PDFBMJ Open Gastroenterol
December 2024
Florence Nightingale Faculty of Nursing Midwifery & Palliative Care, King's College London, London, UK
Objective: Many people with inflammatory bowel disease (IBD) experience fatigue, pain and faecal incontinence that some feel are inadequately addressed. It is unknown how many have potentially reversible medical issues underlying these symptoms.
Methods: We conducted a study testing the feasibility of a patient-reported symptom checklist and nurse-administered management algorithm ('Optimise') to manage common medical causes of IBD-related fatigue, pain and faecal incontinence.
Cancer Invest
January 2025
Department of Internal Medicine C, University Hospital Greifswald, Greifswald, Germany.
Objective: The ExPRO (External factors influencing patient reported outcomes of patients with malignant diseases) study explored associations between QoL data and environmental factors on the day of questionnaire completion: mean temperature, sunshine hours, season, and lunar phase.
Methods: We undertook a cross-sectional analysis of baseline data in the prospective cohort study at two cancer centers in eastern Germany. From December 2020 to December 2021, cancer patients completed the EORTC QLQ-C30 questionnaire upon admission.
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