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Normalization of symptoms in advanced child cancer: the PediQUEST-Response Case Study.

Maria Laura Requena, Madeline Avery, Angela M Feraco, Luciano G Uzal, Joanne Wolfe, Veronica Dussel,

<h4>Context</h4>Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness.<sup>1-5</sup> OBJECTIVE: To identify barriers to effective symptom management in pediatric advanced cancer.<h4>Methods</h4>Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2022, :]

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Clinician end-of-life experiences with pediatric Muslim patients at a US quaternary care center.

Amanda Kolmar, Arif H Kamal, Karen E Steinhauser,

<h4>Context</h4>A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate clinician experiences with Muslim patients in the United States, and none address the ... Read more >>

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[2022, :]

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Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation.

Desiree S Machado, Daniel Garros, Lauriedale Montuno, Leslie K Avery, Sheri Kittelson, Giles Peek, Katie M Moynihan,

Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance exists for clinicians on delivery of optimal EOL care on ECMO. In this article, we review the unique aspects of EOL ... Read more >>

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[2022, :]

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International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS.

Franca Benini, Danai Pappadatou, Mercedes Bernadá, Finella Craig, Lucia De Zen, Julia Downing, Ross Drake, Stefan Freidrichsdorf, Daniel Garros, Luca Giacomelli, Ana Lacerda, Pierina Lazzarin, Sara Marceglia, Joan Marston, Mary Ann Muckaden, Simonetta Papa, Elvira Parravicini, Federico Pellegatta, Joanne Wolfe,

<h4>Context</h4>Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC.<h4>Objectives</h4>An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS ... Read more >>

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[2022, :]

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Reliability and Validity of the Japanese Pediatric Version of Memorial Symptom Assessment Scale.

Tomomi Hayase, Makiko N Mieno, Kyoko Kobayashi, Naoko Mori, Adam Jon Lebowitz, Yoko Kato, Yuya Saito, Yuki Yuza, Hirozumi Sano, Shinya Osone, Tsukasa Hori, Yuichi Shinkoda, Nobuyuki Yamamoto, Daiichiro Hasegawa, Michihiro Yano, Miho Ashiarai, Daisuke Hasegawa, Akihisa Sawada, Takuhiro Yamaguchi, Akira Morimoto, Keitaro Fukushima,

<h4>Context</h4>Few instruments in Japanese assess health-related quality of life in pediatric cancer patients.<h4>Objectives</h4>To translate the Memorial Symptom Assessment Scale (MSAS) into Japanese pediatric and proxy versions (MSAS-J 7-12, MSAS-J 13-18, and MSAS-J-Proxy) and assess validity and reliability.<h4>Methods</h4>Phase I comprised forward-backward translation and pilot testing in 13 children and 16 guardians. ... Read more >>

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Authors' Response to Dr. Zhang on the Methodological and Sham Acupuncture Issues.

Yan-Juan Zhu, Xue-Song Chang, Hai-Bo Zhang,

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Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting.

Allison Silverstein, Mercy Butia, Rahim Bank, Geoffrey Manda, Constance Nyasulu, Noel Mwango, Samuel Makuti, Maria Chikasema, Susan Torrey, Joy Hesselgrave, Jessica Casas, Lameck Thambo, Amos Msekandiana, Msandeni Chiume, Nmazuo Ozuah, Minke Hw Huibers,

<h4>Context</h4>Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early integration of palliative care services becomes essential. While palliative care is a human right, equitable distribution is lacking.<h4>Objectives</h4>We ... Read more >>

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Disparities in Supportive Care Needs Over Time between Racial and Ethnic Minority and Non-Minority Patients with Advanced Lung Cancer.

Melissa B Mazor, Lihua Li, Jose Morillo, Olivia S Allen, Juan P Wisnivesky, Cardinale B Smith,

<h4>Context</h4>Little is known about inequities in supportive care needs among diverse patients with advanced lung cancer.<h4>Objectives</h4>We aimed to examine differences in supportive care needs between racial/ethnic minority and non-minority patients with lung cancer and identify how these needs change over time.<h4>Methods</h4>We performed a prospective cohort study of patients newly diagnosed ... Read more >>

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[2022, :]

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Should INCB Consumption Data Be Utilized to Guide Opioids Policy?

Imad M Treish, Suzan S Hammoudeh, Sewar S Salmany, Asma'a Al-Kharabsheh, Saad Jaddoua, Wesal S Haqaish, Majeda A Al-Ruzzieh, Omar Shamieh,

<h4>Context</h4>The International Narcotics Control Board's (INCB) opioids consumption data are often cited in the literature and by policymakers to benchmark the adequacy of pain management among different countries. This practice may be inaccurate as INCB data does not account for variations in disease burden and use of other pain medications ... Read more >>

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[2022, :]

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Intelligent Palliative Care Based on Patient-Reported Outcome Measures.

Margaret Sandham, Emma Alice Hedgecock, Richard Siegert, Ajit Narayanan, Mevhibe B Hocaoglu, Irene Higginson,

<h4>Context</h4>The growth of patient reported outcome measures data in palliative care provides an opportunity for machine learning to identify patterns in patient responses signifying different phases of illness.<h4>Objectives</h4>The study will explore if machine learning and network analysis can identify phases in patient palliative status through symptoms reported on the Integrated ... Read more >>

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[2022, :]

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Recommendations for Integrating Antiracist Practice at the JPSM.

Yuika Goto, Gayle Kojimoto, Steven Z Pantilat, Bridget M Sumser,

Journals like the JPSM are part of the system of gatekeepers to the academic literature that defines and represents our field. This paper explores how the JPSM leadership, staff and editorial board can design, implement, and foster active antiracist ideas and practice at the individual and system level, focused on ... Read more >>

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[2022, :]

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Palliative and End-of-Life Care After Severe Stroke.

Amber R Comer, Linda S Williams, Stephanie Bartlett, Lynn D'Cruz, Katlyn Endris, McKenzie Marchand, Isabel Zepeda, Sumeet Toor, Carly Waite, Areeba Jawed, Robert Holloway, Claire J Creutzfeldt, James E Slaven, Alexia M Torke,

<h4>Background and objectives</h4>The distinct illness trajectory after acute ischemic stroke demands a better understanding of the utilization of palliative care consultations (PCC) for this patient cohort. This study sought to determine the prevalence, predictors, and outcomes associated with PCC for patients hospitalized with severe ischemic stroke.<h4>Methods</h4>This multicenter cohort study was ... Read more >>

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[2022, :]

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Palliative care in hospitalized middle-aged and older adults with COVID-19.

Lyna Kyria Rodrigues de Almeida, Thiago J Avelino-Silva, Débora Carneiro de Lima E Silva, Bruna A Campos, Gabriela Varela, Cristina Mara Baghelli Fonseca, Victor Lp Amorim, Felipe Maia de Toledo Piza, Marlon Jr Aliberti, Luiza Helena Degani-Costa,

<h4>Background</h4>As COVID-19 overwhelms health systems worldwide, palliative care strategies may ensure rational use of resources while safeguarding patient comfort and dignity.<h4>Aim</h4>To describe palliative care practices in hospitalized middle-aged and older adults in two of the largest COVID-19 treatment centers in Sao Paulo, Brazil.<h4>Design</h4>Retrospective cohort SETTING/PARTICIPANTS: : Eligible patients were those ... Read more >>

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[2022, :]

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A novel scale to assess palliative care patient experience of feeling heard and understood.

Maria O Edelen, Anthony Rodriguez, Wenjing Huang, Robert Gramling, Sangeeta C Ahluwalia,

<h4>Context</h4>Patient experience of palliative care serves as an important indicator of quality and patient-centeredness.<h4>Objectives</h4>To develop a novel patient-reported scale measuring ambulatory palliative care patients' experience of feeling heard and understood by their providers.<h4>Methods</h4>We used self-reported patient experience data collected via mixed-mode survey administration. We conducted an exploratory factor analysis (EFA) ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2022, :]

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LEARNER EXPERIENCES MATTER IN INTERPROFESSIONAL PALLIATIVE EDUCATION: A MIXED METHODS STUDY.

José Pereira, Lynn Meadows, Dragan Kljujic, Tina Strudsholm, Henrique Parsons, Brady Riordan, Jonathan Faulkner, Kathryn Fisher,

<h4>Context</h4>Interprofessional collaboration is needed in palliative care and many other areas in health care. Pallium Canada's two-day interprofessional Learning Essential Approaches to Palliative care (LEAP) Core courses aim to equip primary care providers from different professions with core palliative care skills.<h4>Objectives</h4>Explore the learning experience of learners from different professions who ... Read more >>

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[2022, :]

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Barriers to Pain Management: Incongruence in Black Cancer Caregiving Dyads.

Kalisha Bonds Johnson, Jinbing Bai, Drenna Waldrope, Sudeshna Paul, Haerim Lee, Karen S Lyons, Katherine A Yeager,

<h4>Context</h4>To effectively manage cancer pain, there is a need to understand how caregiving dyads appraise symptoms. Dyadic appraisal of symptoms influences whether the dyad perceives the patient's pain is managed well and whether they are on the same page with their appraisal. Beliefs can act as barriers to the dyadic ... Read more >>

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[2022, :]

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How many cancer patients need palliative care? A population-based study.

Daniela Fortuna, Luana Caselli, Federico Banchelli, Maria Luisa Moro, Massimo Costantini,

<h4>Background</h4>The number of cancer patients potentially amenable to palliative care is conventionally estimated from cancer deaths, as reported in the death certificates. However, a more representative population should also include cancer patients who die from causes other than cancer, as they may develop other life-limiting chronic conditions leading to terminal ... Read more >>

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[2022, :]

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Tackling the Pandemic a year later: Burnout among Home Palliative Care Clinicians.

Giacomo Ercolani, Silvia Varani, Rita Ostan, Luca Franchini, Ahikam David Yaaqovy, Raffaella Pannuti, Guido Biasco, Eduardo Bruera,

<h4>Context</h4>The COVID-19 pandemic strongly challenged healthcare workers, disrupting their work routine and impacting on their professional life. A previous investigation explored levels of burnout and psychological morbidity among palliative care professionals (PCPs) during COVID-19 first wave.<h4>Objective</h4>To update data about burnout and psychological morbidity among PCPs after a year of COVID-19 ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Predictors of Family Caregivers' Depressive- and Prolonged-Grief-Disorder-Symptom Trajectories.

Fur-Hsing Wen, Wen-Chi Chou, Holly G Prigerson, Wen-Chi Shen, Mei Huang Hsu, Siew Tzuh Tang,

<h4>Objective</h4>Depression and prolonged grief disorder (PGD) are related but distinct constructs with different risk factors and treatments. We aimed to determine commonality and differences in factors predicting membership in depressive- and PGD-symptom trajectories to highlight uniqueness of each construct to guide further care and treatments.<h4>Methods</h4>We previously identified four shared trajectories ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Progress update: Palliative care development between 2017 and 2020 in five African countries.

Emmanuel Luyirika, Diederik Lohman, Zipporah Ali, Mackuline Atieno, Anna Mahenge, Paul Mmbando, Esther Muinga, David Musyoki, Mark Donald Mwesiga, Eve Namisango, Peter Nosim, Geoffrey Opio, Sara Pardy, Aimable Ruzima, Eva Skowronska, Blaise Uhagaze, Joyce Zalwango, Aggrey Aluso,

<h4>Introduction</h4>This article provides a progress update on the development of palliative care in five countries in Africa-Kenya, Rwanda, South Africa, Tanzania, and Uganda-between 2017 and 2021, and explores the role of palliative care advocates and the Open Society Foundations in this process.<h4>Methods</h4>In the mid-2000s, palliative care pioneers in these five ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Truths, Principles, Maxims, and Other Smart Things We Learned from J. Randall Curtis.

Abby R Rosenberg, Ruth Engelberg, Erin K Kross,

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Acupuncture for Quality of Life in Gastric Cancer Patients: Methodological Issues.

Kai Zhang,

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care.

Jennifer M Reckrey, Katherine A Ornstein, Karen McKendrick, Emma K Tsui, R Sean Morrison, Melissa Aldridge,

<h4>Context</h4>Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits.<h4>Objectives</h4>describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits.<h4>Methods</h4>Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Differing conceptualizations of the goals of care discussion: A critical discourse analysis.

Jeff Myers, Ginah L Kim, Jessica Bytautas, Fiona Webster,

<h4>Context</h4>The goals of care discussion (GOCD) has been positioned as an improvement strategy to address discordance between care decisions made by seriously ill patients and care received. Interventions aimed at improving GOCDs however have had limited success. This may in part be due to the considerable variation in views on ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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Goals of Care Documentation: Insights from A Pilot Implementation Study.

Marie C Haverfield, Ariadna Garcia, Karleen F Giannitrapani, Anne Walling, Joseph Rigdon, David B Bekelman, Natalie Lo, Lisa S Lehmann, Josephine Jacobs, Natalia Festa, Karl A Lorenz,

<h4>Context</h4>The Life Sustaining Treatment Decision Initiative is a national effort by the Veterans Health Administration to ensure goals of care documentation occurs among all patients at high risk of life-threatening events.<h4>Objectives</h4>Examine likelihood to receive goals of care documentation and explore associations between documentation and perceived patient care experience at the ... Read more >>

J Pain Symptom Manage (Journal of pain and symptom management)
[2021, :]

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