Journal of pain and symptom management最新文献

{"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":"https://doi.org/10.1016/j.jpainsymman.2025.09.016","url":null,"abstract":"<p><strong>Background: </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. The goal of this study was to qualitatively explore these outcomes in this population.</p><p><strong>Methods: </strong>We conducted semi-structured 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 Isenberg","doi":"10.1016/j.jpainsymman.2025.08.038","DOIUrl":"https://doi.org/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":"https://doi.org/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, non-abandonment 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":"Prevalence and severity of symptoms and concerns in patients with pulmonary fibrosis during their final year of life: a cohort analysis.","authors":"Lian Trapman, Lea M Dijksman, Jan C Grutters, Saskia C C M Teunissen, Everlien de Graaf","doi":"10.1016/j.jpainsymman.2025.09.007","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.09.007","url":null,"abstract":"<p><strong>Background: </strong>Optimizing quality of life is the main goal for all patients with Pulmonary Fibrosis (PF). Healthcare professionals need a comprehensive, multidimensional Patient Reported Outcome Measure (PROM) tailored to patients with PF, to guide multidimensional symptom management and enhance quality of life. This study identifies symptom, which includes symptom prevalence, symptom severity, and clinically relevant symptoms and concerns, as a first step towards the development of a PF-specific, multidimensional PROM.</p><p><strong>Methods: </strong>A cohort study was conducted based on completed King's Brief Interstitial Lung Disease questionnaire, collected from deceased patients with PF at a referral center. Symptom prevalence, patient concerns and symptom severity were analyzed descriptively.</p><p><strong>Results: </strong>In total, 180 patients were included, 79% male and median age was 74. Symptoms regarding activity-related dyspnea were most prevalent and severe. Notably, >50% reported anxiety, worries, concerns, and thoughts about the end of life. In addition, 85% of patients reported a low sense of control over the illness. Less common or severe symptoms were related to chest tightness/wheezing and concerns regarding financial burden.</p><p><strong>Conclusion/discussion: </strong>Most prevalent and severe symptoms and concerns were activity-related dyspnea, anxiety, worries, and end-of-life thoughts. When developing a PROM, it should include these symptoms and concerns. Questions concerning dyspnea during rest or activity, and the feeling of control over their disease should be considered, next to general questions about well-being and value of life.</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":"145069540","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}

{"title":"The Giraffe in the Room.","authors":"Stacey Aumock","doi":"10.1016/j.jpainsymman.2025.09.009","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.09.009","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145058535","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":"Pediatric Home-Based Palliative Care and Hospice: Characterizing and Comparing the Populations.","authors":"Ben Reader, Sibelle Aurelie Yemele Kitio, Steven M Smith","doi":"10.1016/j.jpainsymman.2025.09.002","DOIUrl":"10.1016/j.jpainsymman.2025.09.002","url":null,"abstract":"<p><strong>Context: </strong>Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC versus hospice, particularly across different age groups.</p><p><strong>Objectives: </strong>To compare the characteristics of children and young adults who received HBPC and/or hospice and identify differences and similarities between these populations.</p><p><strong>Methods: </strong>A retrospective cohort study of children birth-21 years of age who received HBPC and/or hospice in their home between 1/2019-12/2022 at a single site. Data were manually extracted from the electronic health record. Statistical analyses included descriptive statistics, chi-square or Fisher's exacts tests for categorical variables, and Mann-Whitney U tests for non-normally distributed continuous variables. Subgroup analyses excluded children <1 year of age due to differences unique to population including utilization of perinatal palliative care or palliative care in the neonatal intensive care unit.</p><p><strong>Results: </strong>Of 113 participants, hospice recipients were younger (median 2 vs. 7 years; P = 0.033), more likely to have an oncologic diagnosis, and had a higher mortality during the study period (69.6% vs. 22.1%; P < 0.001). HBPC participants had more hospital admissions, longer inpatient stays, and more outpatient visits. Subgroup analyses of children ≥1 year revealed diagnosis and code status differences, with hospice participants more likely to have 'allow natural death' orders and experience a code status change.</p><p><strong>Conclusion: </strong>Among children and young adults, significant differences exist between those receiving HBPC and those receiving hospice care, particularly in age, diagnosis, and healthcare utilization.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145054196","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":"Palliative Care at the Cutting Edge: Recent Updates in Surgical Palliative Care.","authors":"Antoinette R Esce, T J Douglas, Elizabeth Gorman, Sophia Tam, Christopher D Woodrell, Ana Berlin","doi":"10.1016/j.jpainsymman.2025.08.044","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.08.044","url":null,"abstract":"<p><p>Surgical patients with serious illness often experience unique clinical trajectories, systems of care, and relationships with providers. In order to meet the needs of this patient population and their care teams, hospice and palliative medicine professionals should be familiar with evolving best practices in surgical palliative care. We present the case of a geriatric trauma patient with a new diagnosis of advanced cancer cared for in a surgical intensive care unit. This example highlights important new developments in defining and supporting the geriatric trauma population, improving and expanding surgical palliative care education, and identifying which seriously ill surgical patients benefit most from palliative care interventions.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145054240","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":"Updated Nonresponse Adjustment for the Department of Veterans Affairs Bereaved Family Survey Performance Measure.","authors":"Ann Kutney-Lee, Dawn Smith, Daniel Kinder, Joshua M Thorpe","doi":"10.1016/j.jpainsymman.2025.08.043","DOIUrl":"10.1016/j.jpainsymman.2025.08.043","url":null,"abstract":"<p><strong>Context: </strong>Declining response rates pose a threat to the validity of large surveys designed to measure quality of care. For over a decade, the Department of Veterans Affairs has evaluated the quality of end-of-life care delivered to Veterans using the Bereaved Family Survey (BFS). The BFS Performance Measure (BFS-PM), derived from the BFS, is a widely used metric across the VA healthcare system that informs facility benchmarking and quality improvement efforts.</p><p><strong>Objectives: </strong>The objective of this analysis was to develop and test an updated nonresponse adjustment model for the BFS-PM.</p><p><strong>Methods: </strong>This cross-sectional analysis used BFS data linked with socio-demographic and clinical data available in VA's Corporate Data Warehouse for October 1, 2021-September 30, 2022. A direct inverse propensity weighting approach was applied to adjust for BFS nonresponse. Facility-level differences in BFS-PM scores were calculated before and after weighting to describe the effects of nonresponse adjustment.</p><p><strong>Results: </strong>The analytic sample consisted of 14,510 Veteran decedents whose family member was eligible to receive a BFS, including 8,698 (59.9%) respondents and 5,812 (40.1%) nonrespondents. Across the 145 VA Medical Centers represented in the sample, the mean facility-level response rate was 40.1%. The mean change in the facility-level BFS-PM score from pre- to postweighting for nonresponse was 1.2% (standard deviation = 3.4%) and ranged from -11.2% to 11.9%.</p><p><strong>Conclusion: </strong>Adjustment for nonresponse bias in the calculation of facility-level BFS-PM scores continues to be an important and appropriate practice in the evaluation of quality of end-of-life care in VA inpatient facilities.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145054245","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}