Article
Health Care Sciences & Services
Maria O. Edelen, Anthony Rodriguez, Wenjing Huang, Robert Gramling, Sangeeta C. Ahluwalia
Summary: This study aimed to develop a scale to measure the experience of feeling heard and understood by providers among ambulatory palliative care patients. Through factor analysis, expert ranking, and psychometric methods, a final 4-item scale was established with high reliability and validity.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Health Care Sciences & Services
Julia Rollison, Julia I. Bandini, Marylou Gilbert, Jessica Phillips, Sangeeta C. Ahluwalia
Summary: Patients and caregivers generally had a good understanding of the content of the survey items assessing outpatient palliative care experiences. While some participants faced challenges with the specified three-month timeframe for reporting experiences, overall there were no significant challenges in understanding the wording of the questions and response options.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Multidisciplinary Sciences
Jennifer Byrne, Katriina L. Whitaker, Georgia B. Black
Summary: This study aimed to assess how health literacy universal precautions are delivered in routine GP consultations and explore differences in physicians' communication by areas of deprivation in England. The results showed that physicians often displayed caring attitude and body language, but lacked profession-specific health literacy universal precaution communication skills. Differences in physicians' communication were found to vary according to areas of deprivation.
Article
Oncology
Rose Miranda, Eveline Raemdonck, Luc Deliens, Stein Kaasa, Camilla Zimmermann, Gary Rodin, Lenzo Robijn, Tonje Lundeby, Isabelle Houbracken, Kim Beernaert
Summary: This study investigated the assessment of quality of life (QoL) in cancer patients at 32 cancer centers in Europe and Canada. The findings revealed that a significant proportion of cancer wards and palliative care wards do not routinely assess patients' QoL. Additionally, there were wide variabilities between the centers in terms of assessment methods, frequency, and choice of instruments.
SUPPORTIVE CARE IN CANCER
(2023)
Article
Health Care Sciences & Services
Uta Guhne, Marie Dorow, Jessica Grothe, Janine Stein, Margrit Loebner, Judith Dams, Joanna Coast, Philip Kinghorn, Hans-Helmut Koenig, Steffi G. Riedel-Heller
Summary: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient's wellbeing in terms of 'capability', with high potential for broad international use. The study translated this measure into German and validated its content, showing excellent validity at both item- and scale-level, making it a suitable tool for assessing quality of life at the end of life in various settings.
BMC PALLIATIVE CARE
(2021)
Article
Medicine, General & Internal
Valerie Bailey, Dorothy M. Beke, Jennifer M. Snaman, Faraz Alizadeh, Sarah Goldberg, Melissa Smith-Parrish, Kimberlee Gauvreau, Elizabeth D. Blume, Katie M. Moynihan
Summary: This study aims to evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. The survey results showed that the quality of end-of-life care in the pediatric CICU was generally perceived as positive, but the quality of the 7 days prior to death was rated lower. Variations in ratings were observed based on staff and patient characteristics.
Article
Health Care Sciences & Services
Christopher E. Cox, Deepshikha Charan Ashana, Nita Khandelwal, Arif H. Kamal, Ruth A. Engelberg
Summary: Palliative care research presents challenges in measuring outcomes, especially within seriously ill populations. This manuscript discusses how Randy Curtis and his collaborators have tackled these measurement problems and made significant contributions to clinical care and research.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Rehabilitation
Dorothy Weiss Tolchin, Naomi M. Kaplan, Sean R. Smith, Kim D. D. Barker, Andrea L. Cheville
Summary: This article emphasizes the importance of physiatrists applying palliative care skills in clinical practice and highlights the value of these skills through four clinical vignettes. Resources to support physiatrists in applying basic palliative skills are provided throughout the article.
AMERICAN JOURNAL OF PHYSICAL MEDICINE & REHABILITATION
(2022)
Article
Medicine, General & Internal
Shuqin Zhu, Hanfei Zhu, Xintong Zhang, Kouying Liu, Zumei Chen, Xiaowen Yang, Changxian Sun, Weiping Xie, Qin Xu, Weiying Li, Dong Pang, Yan Cui, Hong Wang
Summary: The study aimed to investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China. A total of 18 articles were included, identifying that patients need a comfortable experience and family caregivers need to care for patients and themselves.
Article
Health Care Sciences & Services
Elizabeth T. Loggers, Amy A. Case, Marcin Chwistek, William Dale, Marvin O. Delgado Guay, Stephen B. Edge, Steven R. Grossman, Jillian Gustin, Judith Nelson, Sahana Rajasekhara, Akhila Reddy, James A. Tulsky, Finly Zachariah, Kristen McNiff Landrum
Summary: The Alliance of Dedicated Cancer Centers (ADCC) initiated the Improving Goal Concordant Care Initiative (IGCC) to address the lack of formal communication training and institutional support among oncologists. IGCC requires four core components for participation, aiming to improve patient outcomes and promote care that aligns with patient preferences.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Article
Multidisciplinary Sciences
Aleksandra Cwiek, Susanne Fuchs, Christoph Draxler, Eva Liina Asu, Dan Dediu, Katri Hiovain, Shigeto Kawahara, Sofia Koutalidis, Manfred Krifka, Partel Lippus, Gary Lupyan, Grace E. Oh, Jing Paul, Caterina Petrone, Rachid Ridouane, Sabine Reiter, Nathalie Schuemchen, Adam Szalontai, Ozlem Unal-Logacev, Jochen Zeller, Bodo Winter, Marcus Perlman
Summary: In a cross-cultural study, it was found that listeners from diverse linguistic backgrounds were able to understand novel vocalizations for various meanings. This challenges the idea that vocalizations have limited potential for iconic representation, showing that people can effectively use vocalizations to communicate a variety of meanings in the absence of words.
SCIENTIFIC REPORTS
(2021)
Article
Critical Care Medicine
Guido Michels, Manuela Schallenburger, Martin Neukirchen, ICU Palliative Study Grp
Summary: A consensus process is underway in Germany to develop recommendations on palliative care in intensive care for non-oncological patients, aiming to address the needs of patients with advanced diseases.
Article
Multidisciplinary Sciences
Ana Paula Salas Moreira, Beatriz Gomez Baceiredo, Carlos Centeno, Carla Reigada
Summary: In Spain, there is a misunderstanding and fear regarding palliative care due to its association with death. To address this, a university course called "Care and Society" was designed for non-health students to disseminate the message of palliative care. The evaluation study aims to determine the effectiveness of the course as a communication strategy and share preliminary results.
Article
Surgery
Katherine C. Lee, Anne M. Walling, Steven S. Senglaub, Rachelle Bernacki, Lee A. Fleisher, Marcia M. Russell, Neil S. Wenger, Zara Cooper
Summary: This study aimed to develop a set of quality indicators to measure access to and the quality of primary palliative care (PC) delivered to seriously ill surgical patients. After two rounds of rating by an expert panel, a total of 24 indicators were rated as valid, covering various phases of surgical care.
Article
Education, Scientific Disciplines
Katherine Ka Pik Chang, Engle Angela Chan, Betty Pui Man Chung
Summary: The study aimed to develop a simulation-based program with clinical modelling in palliative care and communication. The findings indicated an improvement in students' knowledge, attitudes, and efficacy in palliative care after participating in the simulation experience, enhancing their learning and confidence in this area.
NURSE EDUCATION TODAY
(2022)
Article
Urology & Nephrology
Fahad Saeed, Hugh Adams, Ronald M. Epstein
AMERICAN JOURNAL OF NEPHROLOGY
(2020)
Review
Health Care Sciences & Services
Paul R. Duberstein, Michael Chen, Michael Hoerger, Ronald M. Epstein, Laura M. Perry, Sule Yilmaz, Fahad Saeed, Supriya G. Mohile, Sally A. Norton
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2020)
Article
Urology & Nephrology
Fahad Saeed, Susan A. Ladwig, Ronald M. Epstein, Rebeca D. Monk, Paul R. Duberstein
CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY
(2020)
Article
Urology & Nephrology
Fahad Saeed, Catherine R. Butler, Carlyn Clark, Kristen O'Loughlin, Ruth A. Engelberg, Paul L. Hebert, Danielle C. Lavallee, Elizabeth K. Vig, Manjula Kurella Tamura, J. Randall Curtis, Ann M. O'Hare
Summary: The study found that the majority of family members of patients undergoing maintenance dialysis had discussed end-of-life care preferences with the patients, but fewer had discussed stopping dialysis or hospice care. Family members had a fair understanding of patients' preferences regarding cardiopulmonary resuscitation, but lacked detailed understanding of their perspectives on other aspects of end-of-life care.
CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY
(2021)
Article
Health Care Sciences & Services
Marie A. Flannery, Supriya Mohile, Eva Culakova, Sally Norton, Charles Kamen, J. Nicholas Dionne-Odom, Grace DiGiovanni, Lorraine Griggs, Thomas Bradley, Judith O. Hopkins, Jane Jijun Liu, Kah Poh Loh
Summary: This study found that over a quarter of older adults with advanced cancer received assistance in completing patient-reported outcomes. The majority of those who received assistance were identified at the beginning of the study, and the prevalence of assistance decreased over time.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2022)
Article
Oncology
Yingzi Zhang, Supriya Mohile, Eva Culakova, Sally Norton, Kah Poh Loh, Sindhuja Kadambi, Lee Kehoe, Valerie Aarne Grossman, Victor G. Vogel, Brian L. Burnette, Thomas P. Bradley, Marie Flannery
Summary: This study examines the uncertainty trajectory and its interdependent relationship between older adults with advanced cancer and their caregivers. The findings suggest that patient and caregiver uncertainty levels affect each other, highlighting the importance of addressing uncertainty in interventions for older patients with advanced cancer and caregivers.
Editorial Material
Urology & Nephrology
Fahad Saeed, Alvin H. Moss, Paul R. Duberstein, Kevin A. Fiscella
JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY
(2022)
Article
Oncology
S. Yilmaz, M. C. Janelsins, M. Flannery, E. Culakova, M. Wells, P. -j. Lin, K. P. Loh, R. Epstein, C. Kamen, A. S. Kleckner, S. A. Norton, S. Plumb, S. Alberti, K. Doyle, M. Porto, M. Weber, N. Dukelow, A. Magnuson, L. A. Kehoe, G. Nightingale, M. Jensen-Battaglia, K. M. Mustian, S. G. Mohile
Summary: The study aims to evaluate the effectiveness of the GEMS intervention in improving functional outcomes for older cancer survivors.
JOURNAL OF GERIATRIC ONCOLOGY
(2022)
Article
Health Care Sciences & Services
Fahad Saeed, Susan Ladwig, Rebecca Jane Allen, Nwamaka D. Eneanya, Manjula Kurella Tamura, Kevin A. Fiscella
Summary: This study investigated racial disparities in prognostic discussions, beliefs about future health, and completion of advance care planning (ACP)-related documents among Black and White patients receiving maintenance dialysis. The results showed that there were differences in health expectations and completion of ACP-related documents between Black and White patients. Therefore, systemic efforts are needed to investigate differences in health beliefs and address racial disparities in the completion of ACP-related documents.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Article
Public, Environmental & Occupational Health
Paul R. Duberstein, Michael Hoerger, Sally A. Norton, Supriya Mohile, Britt Dahlberg, Erica Goldblatt Hyatt, Ronald M. Epstein, Marsha N. Wittink
Summary: Prior interventions have failed to reduce harmful treatments and procedures at the end-of-life. A new model called the Trans-theoretical Model of Irrational Biomedical Exuberance (TRIBE) integrates Terror Management Theory and Socioemotional Selectivity Theory to explain the influence of social and emotional factors on healthcare utilization. TRIBE highlights the need for psychological innovation in interventions, health policy, and research on healthcare utilization.
SOCIAL SCIENCE & MEDICINE
(2023)
Article
Oncology
Marissa LoCastro, Chandrika Sanapala, Ying Wang, Marielle Jensen-Battaglia, Marsha Wittink, Sally Norton, Heidi D. Klepin, Daniel R. Richardson, Jason H. Mendler, Jane Liesveld, Eric Huselton, Kristen O'Dwyer, Ashley-Marie Cortes, Chrystina Rodriguez, William Dale, Kah Poh Loh
Summary: This study assessed the feasibility and usefulness of a patient-centered communication tool (UR-GOAL tool) for treatment decision making between older patients with AML, their caregivers, and oncologists. The results showed that the UR-GOAL tool helped patients understand their diagnosis and treatment options, improve communication with oncologists, and make more informed decisions.
Letter
Health Care Sciences & Services
Fahad Saeed, Amaka Eneanya, Rebecca J. Allen, Manjula K. Tamura, Kevin A. Fiscella
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Article
Urology & Nephrology
Basil S. S. Kazi, Paul R. R. Duberstein, Benzi M. M. Kluger, Ronald M. M. Epstein, Kevin A. A. Fiscella, Zain S. S. Kazi, Spencer K. K. Dahl, Rebecca J. J. Allen, Fahad Saeed
Summary: This study investigated the prevalence and correlates of preference-concordant care among hospitalized people receiving dialysis. The results showed that a substantial proportion of the sample reported not receiving preference-concordant care. Efforts to improve symptom management and enhance patient engagement in dialysis decision-making may improve patients' perceptions of receiving preference-concordant care.
Article
Urology & Nephrology
Fahad Saeed, Paul R. Duberstein, Ronald M. Epstein, Valerie J. Lang, Scott E. Liebman
Summary: The survey found that a significant majority of nephrology trainees experienced moderate to severe moral distress, mainly related to providing futile treatment to hopelessly ill patients.
AMERICAN JOURNAL OF NEPHROLOGY
(2021)
Meeting Abstract
Nursing
Nathalie Dougoud, Sally Norton, Marie Flannery, Timothy Quill
