Journal of pain and symptom management最新文献

{"title":"Differences in Pain Episodes Among Children With Complex Chronic Conditions at End of Life.","authors":"Jori F Bogetz, Megan Phan, Elsa Ayala, Yasmeen Alayli, Emily E Johnston, Prasanna Ananth, Julie McGalliard, Bryan Strub, Miranda C Bradford, Abby R Rosenberg","doi":"10.1016/j.jpainsymman.2025.09.015","DOIUrl":"10.1016/j.jpainsymman.2025.09.015","url":null,"abstract":"<p><strong>Objective: </strong>This study examined disparities in pain episodes at end-of-life (EOL) among children with complex chronic conditions (CCCs).</p><p><strong>Methods: </strong>This was a retrospective study of children and young adults ages 0-25 years who died in-hospital at a U.S. academic institution between January 2021 and December 2024. Demographic data and pain scores (0 = no pain to 10 = worst pain) from the electronic health record were automatically abstracted. Exploratory analyses included descriptive statistics and Pearson's chi square tests.</p><p><strong>Results: </strong>Among 482 children, 50% (n = 243) were infants, 31% (n = 148) were children 1-12 years, 13% (n = 62) were adolescents 13-17 years, and 6% (n = 29) were young adults ≥18 years. 55% (n = 264) were male, 47% (n = 202) were white, 18% (n = 88) were Hispanic, and 18% (n = 81) preferred a language other than English. 70% (n = 339) had congenital/genetic, neurologic/neuromuscular, and/or metabolic CCCs; 22% (n = 104) had malignancy; 22% (n = 107) had hematologic/immunologic CCCs; and 16% (n = 78) had respiratory CCCs. 87% (n = 420) died in the intensive care unit (ICU). In the last 3 days of life, 60% (n = 276) had at least one moderate-to-severe pain score ≥4 and, of those, 32% (n = 148) had at least one severe pain score ≥7. We observed a higher proportion of children with severe pain episodes among adolescents/young adults, Hispanics, those who preferred a language other than English, those with malignancy, hematologic/immunologic, and respiratory CCCs, and those who died in the ICU.</p><p><strong>Conclusion: </strong>Moderate-to-severe pain episodes were present in >50% of children with CCCs in the last 3 days of life. The proportion differed based on demographic factors reflecting known health disparities.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145149558","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Not Against Death, But for the Dying: A Different Kind of Resistance.","authors":"Juan Luis Torres-Tenor","doi":"10.1016/j.jpainsymman.2025.09.014","DOIUrl":"10.1016/j.jpainsymman.2025.09.014","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145149621","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Economic benefits of investment in palliative care: an appraisal of current evidence and call to action.","authors":"Liz Gwyther, Maya Jane Bates, Bach Tran, Liz Grant, Richard Harding, Eric L Krakauer, Peter May, Eve Namisango, M R Rajagopal, Eleanor Reid, Charles Normand","doi":"10.1016/j.jpainsymman.2025.09.020","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.09.020","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145137938","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Systematic Screening of Advanced Cancer Patients' Curability Perception: A Longitudinal Analysis.","authors":"Kayley M Ancy, Grecia Aldana Singleton, Yi Huang, Donna S Zhukovsky, Yvonne Heung, Eduardo Bruera, David Hui","doi":"10.1016/j.jpainsymman.2025.09.011","DOIUrl":"10.1016/j.jpainsymman.2025.09.011","url":null,"abstract":"<p><strong>Context: </strong>Systematic screening of illness understanding is a novel approach that normalizes discussion of this sensitive topic and helps to identify patients with information needs.</p><p><strong>Objectives: </strong>To examine changes over time in perception of curability among patients with advanced cancer and the predictors of misperception.</p><p><strong>Methods: </strong>We implemented universal electronic systematic screening of illness understanding for each patient in our Supportive Care Center using questions from the Prognosis and Treatment Perception Questionnaire. The current study retrospectively reviewed data from all patients with advanced solid tumors who completed screening at their consultation and at least one follow-up visit within 1 year.</p><p><strong>Results: </strong>The analysis included 432 patients: mean age 58 years (SD 14), 248 (57.4%) female, 331 (76.6%) White. The mean number of visits to the supportive care center was 2.69 (SD 0.9), and the median time between the initial consultation and second visit was 85 days (IQR 68.0-113.3). At visits 1 and 2, 34.0% (147/432) and 36.8% (159/432) of patients, respectively, had an accurate perception of curability (P=0.3). In multivariable analysis, inaccurate perception of curability at both initial consultation and second visit was associated with Asian race (OR=3.08, P=0.02), greater well-being (reverse scored, OR=0.83, P<0.001) and better sleep (OR=0.89, P=0.002), and lower fatigue (OR=0.92, P=0.02), depression (OR=0.88, P=0.001), anxiety (OR=0.9, P=0.006), and financial distress (OR=0.92, P=0.015).</p><p><strong>Conclusion: </strong>Only one in three patients with advanced cancer had an accurate understanding of their curability, with limited improvement over time. Systematic screening may provide opportunities to improve illness understanding and coping support.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145137953","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cancer-Related Fatigue and Muscle Function.","authors":"Mellar P Davis, Armida Parala-Metz","doi":"10.1016/j.jpainsymman.2025.09.019","DOIUrl":"10.1016/j.jpainsymman.2025.09.019","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145137846","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Characterization of Advance Care Planning Activities for Older Adults in a Large Primary Care Network.","authors":"Louise T Hicks, Laura C Hanson, Yumei Yang, Molly Lynch, Feng-Chang Lin, Winfred Frazier, Clarissa Durand-Rougely, Christine E Kistler","doi":"10.1016/j.jpainsymman.2025.09.018","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.09.018","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145137890","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Bereavement Experiences Among Parents of Children With Spinal Muscular Atrophy Type 1.","authors":"Christina M Mulé, Abigail Riley, Debra Lerner, Tamara Vesel, Claudio Galea, Michael Song, Samantha Truong, Lisa Belter, Stacey Kowal, David Fox, Sheila Shapouri, Colleen McCarthy O'Toole, Tara A Lavelle","doi":"10.1016/j.jpainsymman.2025.09.016","DOIUrl":"10.1016/j.jpainsymman.2025.09.016","url":null,"abstract":"<p><strong>Context: </strong>Previous research has demonstrated that parental grief due to the death of a child from a chronic illness can impact a parent's health and work productivity. However, researchers have not adequately studied health-related quality of life (HRQOL) productivity, and social connection among bereaved parents of children who have died from spinal muscular atrophy (SMA) type 1.</p><p><strong>Objective: </strong>The goal of this study was to qualitatively explore these outcomes in this population.</p><p><strong>Methods: </strong>We conducted semistructured qualitative interviews with parents whose children died from SMA type 1 (n = 16) to explore bereavement outcomes. We analyzed participant characteristics using descriptive statistics. We audio-recorded, transcribed, and independently coded interviews with two researchers until we reached consensus. We conducted qualitative thematic analyses to identify interview themes.</p><p><strong>Results: </strong>The death of a child from SMA type 1 is a life-changing experience for parents and impacts their outlook on life, health, relationships, and employment. Most parents first experienced grief when their child was diagnosed, and grief continued throughout their child's life and after death. Parents reported that social support, finding meaning and purpose in their life, and building routines helped to mitigate their grief, while social isolation, maladaptive coping mechanisms, and regret intensified grief.</p><p><strong>Conclusions: </strong>This study characterizes the array of psychosocial and functional sequelae that bereaved parents undergo. This research can be used to develop appropriate interventions to support bereaved parents and develop surveys that can be used to study the longitudinal outcomes associated with grief.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145137805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of a Flexible Artist-Facilitated Storytelling Intervention on a Palliative Care Unit.","authors":"Kyle J Drouillard, Regine Krechowicz, Kim Kilpatrick, Shirley H Bush, Cory J Ingram, Kaitlyn Boese, Jaya Rastogi, Jessica Roy, Carol Wiebe, Jenny McMaster, Claudia Hampel, Sarina R Isenberg","doi":"10.1016/j.jpainsymman.2025.08.038","DOIUrl":"10.1016/j.jpainsymman.2025.08.038","url":null,"abstract":"<p><strong>Context: </strong>Narrative interventions have been shown to be appropriate and feasible in palliative care for patients, caregivers, and healthcare professionals alike. However, such interventions lack customizability, are resource and time intensive, and are often facilitated by clinical staff who have minimal training in story development.</p><p><strong>Objectives: </strong>Evaluate a single, brief, artist-facilitated storytelling session on a palliative care unit and analyze stories with the five elements of close reading in narrative medicine.</p><p><strong>Methods: </strong>A professional storyteller facilitated sessions with patients, caregivers, and healthcare professionals on a palliative care unit, starting with an open-ended question (e.g., \"What story do you want to tell?\"). Through a convergent parallel mixed-methods design, participants quantitatively assessed the appropriateness, acceptability, feasibility, worthwhileness, meaningfulness, and emotional resonance of the intervention, triangulated with rapid analysis of a semi-structured interview with the storyteller. We subsequently analyzed story content with the five elements of close reading in narrative medicine.</p><p><strong>Results: </strong>From 18 sessions, patients (n = 6), caregivers (n = 8), and healthcare professionals (n = 6), found the storytelling session acceptable, appropriate, feasible, meaningful and worthwhile. The storyteller perceived participants as enthusiastic and appreciative. She recommended storytellers be available, accessible, and adaptable to participants' time and energy. Patient and caregiver stories described the palliative care unit as a calm site of reflection, and framed illness as a journey. Healthcare professionals' stories reflected pride in and gratitude for their work.</p><p><strong>Conclusions: </strong>A single, brief, artist-facilitated storytelling session is acceptable, feasible, and appropriate on a palliative care unit. Story content focused on the benefits of palliative care.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145124974","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Community-Based Provider Concerns About Pediatric Hospice and Palliative Care.","authors":"Meaghann S Weaver, Tej Chana, Deborah Fisher, Betsy Hawley, Lisa C Lindley, Steven M Smith, Alix Ware, Christy Torkildson","doi":"10.1016/j.jpainsymman.2025.09.008","DOIUrl":"10.1016/j.jpainsymman.2025.09.008","url":null,"abstract":"<p><strong>Context: </strong>Children and families often rely on community-based hospice and palliative care organizations for care services.</p><p><strong>Objectives: </strong>The purpose of this study was to explore pediatric-specific concerns of field-based hospice and palliative care clinicians in the United States.</p><p><strong>Methods: </strong>The study analyzed responses from a free-text question distributed within an electronic organizational membership survey sent to National Alliance for Care at Home (the Alliance) members. Semantic content analysis was applied.</p><p><strong>Results: </strong>Out of 295 survey respondents, 92 (31%) answered the optional free-text final question: \"What keeps you up at night regarding pediatric palliative and hospice care?\". Over half of responders (53%; n = 49) worry most about \"unmet needs\". Additional practical concerns included: resources; staff shortages and lack of succession plans; training and education gaps; emotional toll; policy confusion; regulatory fears including concerns about the future of concurrent care; community awareness/stigma; referral patterns; lack of leadership support. Concerns were described as being in tension with the philosophy of hospice and palliative care. Responses depicted philosophical fears about the current or future risk of not upholding the field's core values such as equity, fairness, quality, sustainability, viability, nonabandonment due to pragmatic and practical realities.</p><p><strong>Conclusion: </strong>Further coordinated research and engagement are warranted to prevent current evening concerns from devolving into daytime realities.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145081003","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Describing the Uniquely Vulnerable Patients Served by an Outpatient Non-Oncologic Palliative Clinic.","authors":"Megan Pogue, William Leach, Elizabeth Franko, Grace Joseph, David Rigas, Gillian Love","doi":"10.1016/j.jpainsymman.2025.09.010","DOIUrl":"10.1016/j.jpainsymman.2025.09.010","url":null,"abstract":"<p><strong>Context: </strong>Outpatient nononcologic palliative care is a growing field with an evolving identity.</p><p><strong>Objectives: </strong>The objective of this study was to assess patient demographics and clinical utilization of an outpatient nononcologic palliative care clinic.</p><p><strong>Methods: </strong>We collected and analyzed data from the first two years of an urban, nononcologic palliative care clinic within a quaternary academic center.</p><p><strong>Results: </strong>The diagnoses with highest clinic utilization were heart failure (46.2%) and end-stage lung disease (16.6%). The medical complexity of these patients was high, with geriatric patients comprising 55% of the clinic population and 95.3% of patients meeting criteria for polypharmacy. Insurance data demonstrated a socially vulnerable population served with 65.6% of patients on a Medicare product, 36.7% on a Medicaid product, and 4.7% uninsured. 21.3% of new clinic visits were for medical cannabis certification. Patients elected for telehealth visits more often than age matched patients in the general primary care setting and were less likely to no-show to telehealth visits. Primary diagnosis impacted frequency of follow up, with patients with end stage lung disease returning more regularly than patients with heart failure.</p><p><strong>Conclusion: </strong>Nononcologic palliative care serves a uniquely medical vulnerable population and can be supported through utilization of clinical infrastructure that is already in place, establishing multidisciplinary collaborations, and utilizing telehealth.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145069502","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}