Article
Health Care Sciences & Services
Margaret H. Sandham, Emma A. Hedgecock, Richard J. Siegert, Ajit Narayanan, Mevhibe B. Hocaoglu, Irene J. Higginson
Summary: This study investigates whether machine learning and network analysis can identify different phases of patient palliative status based on symptoms reported on the Integrated Palliative Care Outcome Scale (IPOS). The results show significant variation in symptoms among different phases and clear associations between specific symptoms. Machine learning techniques are also utilized to predict the possible transition between phases. These findings, coupled with advancements in mobile apps and wearable technology, suggest the potential for increased use of digital therapeutics in continuous palliative care monitoring.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Psychology, Multidisciplinary
Yitao Wei, Huimin Xiao, Hong Wu, Binbin Yong, Zhichao Weng, Weiling Chen
Summary: This study tested the reliability and validity of the Chinese version of Quality of Life in Life-threatening Illness-Family Carer Version (QOLLTI-F-CV). The results showed that the Chinese version had good psychometric properties in terms of factor structure, convergent validity, discriminant validity, internal consistency, and test-retest reliability. The questionnaire is a valid and reliable instrument for identifying concerns about quality of life among family caregivers of advanced cancer patients in China.
FRONTIERS IN PSYCHOLOGY
(2022)
Article
Oncology
Alexandra S. Bercow, Roni Nitecki, Hilary Haber, Allison A. Gockley, Emily Hinchcliff, Kaitlyn James, Alexander Melamed, Elisabeth Diver, Mihir M. Kamdar, Sarah Feldman, Whitfield B. Growdon
Summary: The study investigated the impact of palliative care referral on women who died from cervical cancer in two tertiary care centers. Less than half of cervical cancer decedents received palliative care consultations, and those referred to palliative care were often evaluated late in their disease course. Palliative care utilization was associated with a lower incidence of poor-quality end-of-life care.
INTERNATIONAL JOURNAL OF GYNECOLOGICAL CANCER
(2021)
Article
Clinical Neurology
Connie Marras, Kelly A. Mills, Shirley Eberly, David Oakes, Kelvin L. Chou, Matthew Halverson, Sotirios A. Parashos, Christopher G. Tarolli, Jin-Shei Lai, Cindy J. Nowinsky, Oksana Suchowersky, Eric S. Farbman, Lisa M. Shulman, Tanya Simuni
Summary: The Neuro-QoL item banks showed limited utility as outcome measures in clinical trials for Parkinson's disease, indicating the need for more sensitive tools.
MOVEMENT DISORDERS
(2021)
Article
Clinical Neurology
Bruce Mason, Kirsty Boyd, Fergus Doubal, Mark Barber, Marian Brady, Eileen Cowey, Akila Visvanathan, Steff Lewis, Katie Gallacher, Sarah Morton, Gillian E. Mead
Summary: The study generated a list of 36 different outcome domains from 4 key policy documents. A rapid scoping review identified 43 potential outcome measures, which were used to create a shortlist of 16 measures. The consensus agreed on shared decision-making and quality of life as the most important outcome domains for future trials.
Article
Health Care Sciences & Services
Eric S. Orman, Andrew Yousef, Chenjia Xu, Hani Shamseddeen, Amy W. Johnson, Lauren Nephew, Marwan Ghabril, Archita P. Desai, Kavish R. Patidar, Naga Chalasani
Summary: This study examined the relationship between palliative care, patient-reported measures, and outcomes in hospitalized patients with cirrhosis. The results showed that patients who received palliative care had more severe disease and functional impairment, and palliative care may be associated with reduced utilization and increased completion of advanced directives.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Review
Economics
Angel Romero-Collado, Elvira Hernandez-Martinez-Esparza, Edurne Zabaleta-del-Olmo, Ana-Maria Urpi-Fernandez, Rosalia Santesmases-Masana
Summary: This study aimed to find the most suitable patient-reported outcome measures (PROMs) for quality of life (QoL) in people affected by diabetic foot. However, the available PROMs have limited evidence for their measurement properties, and no fully suitable PROM was identified. Four PROMs have potential for recommendation pending further investigation.
Review
Gerontology
Darshini R. Ayton, Madeleine L. Gardam, Elizabeth K. Pritchard, Rasa Ruseckaite, Joanne Ryan, Sandra J. Robinson, Henry Brodaty, Stephanie A. Ward, Susannah Ahern
Summary: This scoping review aimed to identify dementia-specific PROMs, and found seven specific PROMs for dementia, but none were used in dementia registries. Most studies utilize PROMs via a proxy.
Review
Rheumatology
Erin Knight, Karen E. Schifferdecker, Guy S. Eakin, Bryce B. Reeve
Summary: This article reviewed the HRQOL domain coverage and psychometric evidence of PROMs used with adults with different types of arthritis, aiming to help PROM users select appropriate measures. The study found that measures most commonly assessed physical health and level of independence, while fewer assessed social relations, environment, and psychological health.
RHEUMATOLOGY INTERNATIONAL
(2023)
Review
Medicine, General & Internal
Alba Nicolas-Boluda, Anne Oppenheimer, Jerome Bouaziz, Arnaud Fauconnier
Summary: Patient Reported Outcome Measures (PROM) allow capturing patients' perspectives on their condition in the context of endometriosis care. Despite their extensive use in research and clinical trials, PROMs are rarely used in clinical practice. The development of digital tools can help facilitate the integration of PROMs into routine endometriosis care, improving patient-centered communication and quality of life.
JOURNAL OF CLINICAL MEDICINE
(2021)
Review
Psychiatry
Howard Ryland, Jonathan Cook, Denis Yukhnenko, Raymond Fitzpatrick, Seena Fazel
Summary: This systematic review identified a large number of instruments available for outcome measurement in forensic mental health services, but found limited evidence, with only one instrument having sufficient evidence for its development and content validity.
EUROPEAN PSYCHIATRY
(2021)
Article
Psychology, Multidisciplinary
Masoud Sirati Nir, Maryam Rassouli, Abbas Ebadi, Soolmaz Moosavi, Maryam Pakseresht, Fatemeh Hasan Shiri, Hossein Souri, Morteza Nasiri, Maryam Karami, Armin Fereidouni, Salman Barasteh
Summary: This study aimed to assess the psychometric properties of the translated version of the Palliative care Outcome Scale (POS). Through various evaluations, including face validity, content validity, construct validity, and reliability assessment, it was found that the Persian version of POS is a valid and reliable tool for monitoring the consequences of palliative care in Iranian cancer patients.
FRONTIERS IN PSYCHOLOGY
(2022)
Article
Medicine, General & Internal
Saangyoung E. Lee, Zainab Farzal, Adam J. Kimple, Ramon Moreno-Luna, Brent A. Senior, Brian D. Thorp, Charles S. Ebert
Summary: This study aims to evaluate the accessibility and readability of Spanish PROMs used to evaluate rhinosinusitis. The results indicate that most Spanish PROMs used for assessment of rhinosinusitis are above the recommended readability level. Future development of PROMs should ensure appropriate readability levels to provide good patient-centered care.
JOURNAL OF CLINICAL MEDICINE
(2022)
Review
Geriatrics & Gerontology
Sakhi Bhansali, Ekhlas Assaedi, Jeryl Ritzi T. Yu, Nymisha Mandava, Claire Sonneborn, Olivia Hogue, Benjamin L. Walter, Renato V. Samala, Adam Margolius
Summary: This study aimed to describe the trends of in-hospital management and utilization of palliative care services for Parkinson's disease patients at the end of life (EOL). It found that EOL patients had low utilization of palliative care services and delayed discussions of goals of care. More awareness and intervention are needed to address the unique challenges faced by Parkinson's disease patients with advanced disease.
FRONTIERS IN AGING NEUROSCIENCE
(2023)
Article
Oncology
Rasmus Blechingberg Friis, Niels Henrik Hjollund, Helle Pappot, Gry Assam Taarnhoj, Jesper Medom Vestergaard, Halla Skuladottir
Summary: This study evaluated symptom development in patients with advanced lung cancer during palliative treatment using electronic PROs. Specific symptom scales were identified to predict survival at disease progression. The results show the potential value of using PRO measures in clinical decision-making for patients with lung cancer.
CLINICAL LUNG CANCER
(2021)
Article
Clinical Neurology
Janis M. Miyasaki, Shen-Yang Lim, K. Ray Chaudhuri, Angelo Antonini, Maria Piemonte, Edward Richfield, Daniela Alburquerque Gonzalez, Stefan Lorenzl, Richard Walker, Roongroj Bhidayasiri, Raquel Bouca, Victor McConvey
Summary: The majority of MDS member respondents recognize the role of palliative care in movement disorders, but there are significant barriers to access such as available workforce, financial support, and knowledge of palliative care physicians specific to movement disorders.
MOVEMENT DISORDERS
(2022)
Article
Clinical Neurology
Roman Ayele, Zachary A. Macchi, Megan Dini, Meredith Bock, Maya Katz, Steven Z. Pantilat, Jacqueline Jones, Benzi M. Kluger
Summary: The study explored the impact of the COVID-19 pandemic on community neurologists caring for patients with neurodegenerative illnesses, identifying challenges such as the political climate, lack of support for new care models, frontline exposure to suffering, and clinician self-care. Efforts to improve care delivery should focus on reducing clinician burnout and incorporating support for new care models adopted during the pandemic.
Article
Clinical Neurology
Zachary A. Macchi, Janis Miyasaki, Maya Katz, Nicholas Galifianakis, Stefan Sillau, Benzi M. Kluger
Summary: The study investigated the prevalence and incidence of caregiver-reported aggressive behaviors among people living with advanced Parkinson disease and related disorders, highlighting the lack of research in this area and the need for increased awareness among neurologists. Factors such as patient-perceived quality of life, patient's depression, caregiver burden, and anxiety were associated with physical aggression, while age, sex, cognitive impairment, and dementia were not related to aggression. Further research is needed to explore the relationship between aggression and health outcomes for patients and caregivers.
NEUROLOGY-CLINICAL PRACTICE
(2021)
Article
Clinical Neurology
Beth Langford, Yiling Zhou, Janis M. Miyasaki
Summary: This study investigated the impact of multiple system atrophy (MSA) on caregivers through surveys and interviews. The findings revealed that caregivers experienced mild to moderate caregiver burden and anxiety, and the rapid progression of the disease increased their workload. Publicly funded home care services were crucial for caregivers to provide care at home.
CANADIAN JOURNAL OF NEUROLOGICAL SCIENCES
(2023)
Article
Clinical Neurology
Isaiah Kletenik, Samantha K. Holden, Stefan H. Sillau, Nicola O'Connell, Lindsey MacGillivray, Joel Mack, Beatrix Haddock, M. Ashworth Dirac, Anthony S. David, Timothy R. Nicholson, Sanaz N. Attaripour Isfahani, Carine W. Maurer, Sarah C. Lidstone, Mark Hallett, Kathrin LaFaver, Brian D. Berman, Jon Stone
Summary: The study found that women and men with functional movement disorders reported higher rates of sexual abuse compared to the control group. A history of childhood sexual abuse and physical abuse increased the likelihood of women developing functional movement disorders. Although no significant associations were found in men, the limited data for the male cohort may affect the reliability of the results.
JOURNAL OF NEUROLOGY
(2022)
Letter
Clinical Neurology
Benzi M. Kluger, Timothy E. Quill
Review
Clinical Neurology
Gregory D. Scott, Moriah R. Arnold, Thomas G. Beach, Christopher H. Gibbons, Anumantha G. Kanthasamy, Russell M. Lebovitz, Afina W. Lemstra, Leslie M. Shaw, Charlotte E. Teunissen, Henrik Zetterberg, Angela S. Taylor, Todd C. Graham, Bradley F. Boeve, Stephen N. Gomperts, Neill R. Graff-Radford, Charbel Moussa, Kathleen L. Poston, Liana S. Rosenthal, Marwan N. Sabbagh, Ryan R. Walsh, Miriam T. Weber, Melissa J. Armstrong, Jee A. Bang, Andrea C. Bozoki, Kimiko Domoto-Reilly, John E. Duda, Jori E. Fleisher, Douglas R. Galasko, James E. Galvin, Jennifer G. Goldman, Samantha K. Holden, Lawrence S. Honig, Daniel E. Huddleston, James B. Leverenz, Irene Litvan, Carol A. Manning, Karen S. Marder, Alexander Y. Pantelyat, Victoria S. Pelak, Douglas W. Scharre, Sharon J. Sha, Holly A. Shill, Zoltan Mari, Joseph F. Quinn, David J. Irwin
Summary: The LBDA Biofluid/Tissue Biomarker Symposium, held by the Lewy Body Dementia Association, presented advancements in biomarkers for Lewy body dementia (LBD) and attracted over 200 scientists and physicians from various institutions. The methods for confirming and quantifying the presence of Lewy body and Alzheimer's pathology, as well as novel biomarkers, were discussed.
FRONTIERS IN NEUROLOGY
(2022)
Article
Clinical Neurology
Samantha K. Holden, Christopher H. Domen, Stefan Sillau, Ying Liu, Maureen A. Leehey
Summary: Despite limited evidence, people with Parkinson's disease (PD) reported subjective benefits, primarily for sleep, pain, and mood, when using cannabis. CBD products with oral administration were more commonly used and showed mild subjective improvements. Higher THC products may have higher risk/higher reward for PD-related symptoms.
MOVEMENT DISORDERS CLINICAL PRACTICE
(2022)
Editorial Material
Clinical Neurology
Benzi M. Kluger, Neha M. Kramer, Maya Katz, Nicholas B. Galifianakis, Steven Pantilat, Judith Long, Christina L. Vaughan, Laura A. Foster, Claire J. Creutzfeldt, Robert G. Holloway, Stefan Sillau, Joshua Hauser
Summary: This article describes the development and dissemination plan of the EPEC Neurology program, presents initial evidence of its efficacy, and discusses opportunities for neurology educators and health services researchers to utilize these resources.
NEUROLOGY-CLINICAL PRACTICE
(2022)
Article
Neurosciences
Isabelle Buard, Natalie Lopez-Esquibel, Finnuella J. Carey, Mark S. Brown, Luis D. Medina, Eugene Kronberg, Christine S. Martin, Sarah Rogers, Samantha K. Holden, Michael R. Greher, Benzi M. Kluger
Summary: Cognitive impairment in Parkinson's disease (PD) could be related to fluctuations in prefrontal glutamate metabolism. These preliminary findings suggest that prefrontal glutamate may serve as a biomarker for the progression of cognitive impairments in PD.
FRONTIERS IN HUMAN NEUROSCIENCE
(2022)
Review
Clinical Neurology
Benzi M. Kluger, Andrew P. Huang, Janis M. Miyasaki
Summary: There is growing optimism in the therapeutic potential of cannabis and cannabinoid-based chemicals for movement disorders, but scientific basis and safety concerns remain. Clinical research on cannabinoids for movement disorders shows promising results but also inconclusive or negative outcomes in some cases. Further research is needed to understand the clinical benefits and long-term side effects of medical cannabis products for movement disorders.
PARKINSONISM & RELATED DISORDERS
(2022)
Article
Clinical Neurology
Zachary A. Macchi, Sandhya Seshadri, Roman Ayele, Meredith Bock, Judith Long, Heather Coats, Janis Miyasaki, Steven Z. Pantilat, Maya Katz, Elizabeth J. Santos, Stefan H. Sillau, Hillary D. Lum, Benzi M. Kluger
Summary: This study aimed to describe the characteristics, associated factors, and consequences of aggression towards caregivers in Parkinson's disease and related disorders. The findings revealed that aggression was associated with factors such as disease duration, patient grief, symptom burden, resistance to care, caregivers' depression, and caregiving burden. Caregivers believed that aggression resulted from patients' difficulty in coping with disease progression and related losses, and aggression had negative effects on caregivers' stress and mental health.
MOVEMENT DISORDERS CLINICAL PRACTICE
(2022)
Editorial Material
Clinical Neurology
Robert Brett McQueen, Mark Gritz, Drew Kern, Julienne L. Bemski, Ian Shelton, Martha Meyer, Benzi M. Kluger
Summary: The implementation of palliative care in neurology settings has been shown to improve symptom control and reduce acute care admissions. This study investigates the costs and return on investment of team-based palliative care in two outpatient clinics. The results suggest that both neurology PC and movement disorders clinics provided increased revenue to the health system. Opportunities to improve ROI include efficient personnel allocation and expanding telemedicine.
NEUROLOGY-CLINICAL PRACTICE
(2022)
Correction
Clinical Neurology
B. M. Kluger, P. Hudson, L. C. Hanson
Article
Clinical Neurology
Jun-Pyo Hong, Hanim Kwon, Euyhyun Park, Sun-Uk Lee, Chan-Nyoung Lee, Byung-Jo Kim, Ji-Soo Kim, Kun-Woo Park
Summary: In patients with mild-to-moderate PD, vestibular function assessed by video head-impulse tests appears relatively preserved and has minimal impact on the risk of falls. Risk of postural instability is associated with the severity of clinical symptoms in PD.
PARKINSONISM & RELATED DISORDERS
(2024)
Article
Clinical Neurology
Yaqin Xiang, XiuRong Huang, Qian Xu, Zhenhua Liu, Yase Chen, Qiying Sun, Junling Wang, Hong Jiang, Lu Shen, Xinxiang Yan, Beisha Tang, Jifeng Guo
Summary: Using the novel data-driven method DEBM, this study determined the sequence of several common biomarker changes in Parkinson's disease (PD). The left putamen was found to be the earliest biomarker to become abnormal, followed by the right putamen, CSF alpha-synuclein, right caudate, left caudate, and serum NfL. The estimated disease stages showed significant differences between PD and healthy controls, and achieved a high accuracy for distinguishing PD from HC.
PARKINSONISM & RELATED DISORDERS
(2024)
Article
Clinical Neurology
Yan Li, David J. McLernon, Carl E. Counsell, Angus D. Macleod
Summary: This study aimed to investigate the incidence and risk factors for institutionalisation in Parkinson's disease (PD) and atypical parkinsonism (AP). The study found that institutionalisation was more frequent in AP compared to PD and controls. Age, poorer cognition, and more-severe parkinsonian impairment were independent predictors of institutionalisation.
PARKINSONISM & RELATED DISORDERS
(2024)
