Journal of pain and symptom management最新文献

{"title":"Parenting Support Intervention During Pregnancy with a Life-limiting Fetal Condition: A Pilot Study.","authors":"Denise Côté-Arsenault, Samah Hawsawi, Erin Denney-Koelsch, Kathie Kobler, Kimberly Spence","doi":"10.1016/j.jpainsymman.2025.03.002","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.002","url":null,"abstract":"<p><strong>Context: </strong>Standard care in the United States for parents with life-limiting fetal conditions (LLFC) focuses on medical decision-making through fetal care centers and perinatal palliative care (PPC) teams when accessible. There are no PPC interventions to optimize parents' daily lived experiences during a LLFC pregnancy. We developed a novel, relationship-centered intervention, the Developmental Perinatal Parenting Intervention with Life-limiting Fetal Conditions (DPPI-LLFC), based on two theoretical frameworks and one concept, delivered separate from routine care.</p><p><strong>Objectives: </strong>To assess whether the DPPI-LLFC is feasible and acceptable for the parents, interventionists, and research team. We also evaluate parents' experience of the intervention components and completion of measures.</p><p><strong>Methods: </strong>A single-arm pilot study of the DPPI-LLFC was delivered via telehealth. We trained 3 nurse interventionists (RN-Is) in the theoretical frameworks and intervention. Eligible participants were mothers continuing their LLFC pregnancy and their willing co-parents. RN-Is met with participants monthly throughout pregnancy and twice after birth. Participants completed mental health measures via online questionnaire. Fidelity was assessed across the study.</p><p><strong>Results: </strong>13 parents (8 mothers, 5 fathers) participated, with 92% retention. Intervention delivery via telehealth was feasible and acceptable by participants. Fidelity assessments resulted 100% inter-rater agreement; all DPPI-LLFC components were delivered as designed. Pregnancy anxiety decreased over pregnancy and participants reported low-moderate decision regret and grief intensity by the study's end. Participants reported the intervention being \"meaningful and appreciated.\"</p><p><strong>Conclusion: </strong>The novel, telehealth-delivered DPPI-LLFC was feasible, acceptable, and valued by parents during their LLFC pregnancy. This intervention holds great promise for addressing PPC access and delivery challenges.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143663372","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":"Racial Disparities in Advance Care Planning Documentation Among Older, Lesbian and Gay Adults.","authors":"Mekiayla C Singleton, Elissa Kozlov, M Reuel Friedman, Susan M Enguidanos","doi":"10.1016/j.jpainsymman.2025.03.003","DOIUrl":"10.1016/j.jpainsymman.2025.03.003","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630551","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":"Family-Integrated Advance Care Planning for Cancer Patients: A Mixed-Methods Feasibility Study.","authors":"Megumi Kishino, Jonathan Koffman, Jun Hamano, Takahiro Higashibata, Yoshiyuki Kizawa, Clare Ellis-Smith","doi":"10.1016/j.jpainsymman.2025.03.001","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.001","url":null,"abstract":"<p><strong>Context: </strong>Advance care planning programs which focus on facilitating conversations among families are scant. We developed a family-integrated Serious Illness Conversation Guide (SICG-Fam).</p><p><strong>Objectives: </strong>This study aims to examine the ability and acceptability of the SICG-Fam for advanced cancer patients, family members and physicians in Japan.</p><p><strong>Methods: </strong>Trained physicians provided their patients and family members with serious illness conversations using the SICG-Fam. Data regarding ability and acceptability were collected through questionnaires and semi-structured interviews with patients, family members and physicians. Descriptive statistics and thematic analyses were conducted for data analysis.</p><p><strong>Results: </strong>From February to May 2023, 10 physicians and 22 dyads comprising 22 patients and 24 family members participated. Physicians had a median of 19 years' experience. Each item in the SICG-Fam was delivered by physicians in 18-22 of all the 22 conversations. Patients and family members, except for one family member, judged the conversation as being helpful to discuss their respective views on patients' wishes. Two patients and four family members evaluated the conversation as distressing. Family context, including family relationships, and how physicians engage with them, including supportive attitudes and encouraging patients and family members to express their views, affected the perceived helpfulness of the conversation.</p><p><strong>Conclusion: </strong>The SICG-Fam was delivered by physicians and accepted by patients and family members. However, how physicians consider the family perception of the conversation may mitigate potential patient and family member distress. Future studies should focus on further refining the intervention to address the identified challenges and rigorously investigate the effectiveness of this approach.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625151","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 need and quality of life mediated by psychological distress in neurologic diseases.","authors":"Lily Man Lee Chan, Edmond Pui Hang Choi, Wendy Wing Tak Lam, Koon Ho Chan, Shirley Yin Yu Pang, Jojo Yan Yan Kwok","doi":"10.1016/j.jpainsymman.2025.03.004","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.004","url":null,"abstract":"<p><strong>Context: </strong>Patients with progressive neurologic diseases (PNDs) face a prolonged and fluctuating course of illness marked by increasing disability and a range of nonmotor symptoms. However, the impacts of nonmotor symptoms and unmet care needs remain underexplored. Palliative care needs arise from the multifaceted sufferings associated with PNDs, encompassing not only physical pain but also psychological, social, and spiritual distress. Despite recommendations for early palliative care for PNDs to address these multidimensional sufferings, access to such supportive care is often restricted to advanced stages of the disease.</p><p><strong>Objectives: </strong>This cross-sectional study aimed to examine palliative care needs, psychological distress, health-related quality of life, and the mediating effects of psychological distress on palliative care needs and health-related quality of life among patients with PNDs.</p><p><strong>Methods: </strong>210 patients with PNDs (Parkinson's disease or multiple sclerosis) were recruited using convenience sampling from regional neurology outpatient clinics and patient support groups in Hong Kong. Participants responded to Palliative Care Outcome Scale (POS), Hospital Anxiety and Depression Scale (HADS), and EQ-5D-5L surveys.</p><p><strong>Results: </strong>Most respondents (59.0%) walked without aid, whereas 26.2% required assistance and 14.8% were wheelchair-restricted. The most prevalent palliative care needs were physical symptoms other than pain, psychosocial support, and spiritual burden. A significant portion of participants exhibited possible anxiety (41.1%) or depression (48.6%). Hierarchical regression analysis indicated that mobility, palliative care needs, anxiety, and depression were significantly associated with the health-related quality of life. Anxiety and depression partially mediated the relationship between palliative care needs and quality of life.</p><p><strong>Conclusion: </strong>Given the chronic, fluctuating illness trajectory, early recognition and management of emerging palliative care needs, particularly psychospiritual distress, is crucial for enhancing health-related quality of life for patients with PNDs.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625152","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":"Temporary Steroid Magic.","authors":"Shireen N Heidari","doi":"10.1016/j.jpainsymman.2025.03.008","DOIUrl":"10.1016/j.jpainsymman.2025.03.008","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625157","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":"Relationship between parental distress and proxy symptom reports in pediatric palliative care.","authors":"Douglas L Hill, Russell T Nye, Jackelyn Y Boyden, Emily E Johnston, Pamela Hinds, Sarah Friebert, Jori Bogetz, Tammy I Kang, Matt Hall, Joanne Wolfe, Chris Feudtner","doi":"10.1016/j.jpainsymman.2025.03.007","DOIUrl":"10.1016/j.jpainsymman.2025.03.007","url":null,"abstract":"<p><strong>Context: </strong>In pediatric palliative care (PPC), patients often are not able to report symptoms so proxy reports from parents are used. Whether psychological distress in the proxies affects reports of patients' symptoms is unknown.</p><p><strong>Objective: </strong>To measure the influence of parents' distress on proxy-reported scores regarding symptoms by analyzing pairs of parents reporting on the same child.</p><p><strong>Methods: </strong>In a large prospective cohort study of PPC patients, we collected parents' reports of child symptoms (Memorial Symptom Assessment Scale) and their own psychological distress (Kessler-6). In this quasi-experimental design study, we examined data from pairs of parents reporting symptoms for the same child. Using regression modeling, we estimated the association between parental distress scores and patient total symptom scores across the entire sample accounting for clustering within families, and then measured the association within-families of the absolute differences of the two parents' distress and the difference in their symptom scores.</p><p><strong>Results: </strong>Among 152 parents in 76 families, 50.0% were female, 80.9% were White, and the mean age was 36.4 (SD 9.0) years. Across the sample, each 1-point increase in reported parental distress was associated with a 1.07 (95% CI: 0.87, 1.28; p<.001) increase in proxy-reported patient symptom score. Within families, relative to the other parent, each 1-point increase in the difference of the distress scores was associated with a 0.33-point (95% CI: 0.32, 0.35; p=0.006) increase in the difference in symptom scores.</p><p><strong>Conclusion: </strong>Psychological distress appears to influence proxy reports of symptoms which has implications for future research and clinical practice.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625154","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 Faces of Disparity.","authors":"Rebecca Kowaloff","doi":"10.1016/j.jpainsymman.2025.03.005","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.005","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143615709","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":"Factors Influencing Occupational Burnout Among Palliative Care Practitioners in China.","authors":"Yan Wu, Shi-Zhu Li, Fang Tan","doi":"10.1016/j.jpainsymman.2025.02.467","DOIUrl":"10.1016/j.jpainsymman.2025.02.467","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this investigation was to examine the job burnout status among health practitioners in palliative care wards within a specific province of China and to analyze associated factors.</p><p><strong>Methods: </strong>A multicenter cross-sectional study design was utilized from August to October 2023, enrolling 164 health practitioners from nine hospitals within the palliative care wards of the specified province. Data collection involved anonymous questionnaires covering basic personal information, job characteristics, and levels of occupational burnout. A self-designed general questionnaire assessed the personal basic information and job characteristics of the health practitioners, while the Maslach Burnout Inventory-Human Services Survey (MBI-HSS) measured the level of occupational burnout. Data analysis included binary logistic univariate regression analysis and binary logistic stepwise regression analysis, with statistical significance set at P < 0.05.</p><p><strong>Results: </strong>Forty-one participants (31.5%) faced both severe emotional exhaustion and depersonalization, while ninety-seven participants (74.6%) reported a significant decline in personal accomplishment. The overall rate of detecting occupational burnout among palliative care practitioners reached 44.6%. Scores for each dimension of burnout were as follows: the mean score for severe emotional exhaustion was 33.15 (SD = 6.34); the mean score for severe depersonalization was 13.51 (SD = 4.07); and the mean score for severe decline in personal accomplishment was 23.64 (SD = 7.15). Factors such as work intensity, prospects in palliative care careers, and hospitalization payment methods have shown notable impacts on severe emotional exhaustion (P < 0.05). Similarly, prospects in palliative care careers was were significantly associated with severe depersonalization (P = 0.005). Furthermore, factors including prospects in palliative care careers, participation in specialized training, availability of psychological counselors/psychotherapists, and employment method significantly influenced the severe declines in personal accomplishment (P < 0.05).</p><p><strong>Conclusion: </strong>This is the first survey to assess the prevalence of burnout among palliative care physicians in Sichuan Province in China. The overall detection rate of occupational burnout is relatively high among healthcare practitioners there. Work intensity, prospects in palliative care careers, hospitalization payment method, participation in specialized training, availability of psychological counselors/psychotherapists, and employment method have shown significant impact on burnout levels.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143586025","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":"Medical Interpreters' Experiences with Patients Who Are Near End-of-Life and Their Family Members.","authors":"Joycelyn Howard, Alexia M Torke, Susan E Hickman, Greg Sachs, Sylk Sotto-Santiago, James E Slaven, Denise Robinson","doi":"10.1016/j.jpainsymman.2025.02.468","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.02.468","url":null,"abstract":"<p><strong>Context: </strong>Medical interpreters play a critical role in communicating with patients and families with non-English language preference (NELP), previously referred to as limited English proficiency , near the end-of-life (EOL) but often receive minimal education about providing this type of care.</p><p><strong>Objectives: </strong>To understand interpreter experiences with providing services for patients near the end of life and needs for professional support and training in EOL care.</p><p><strong>Methods: </strong>A 60 question survey, was distributed to 1,660 medical interpreters at two hospitals and one interpreter service company. The survey included questions about participant characteristics, examined interpreter experiences, self-efficacy responding to EOL symptoms and EOL concerns, comfort levels, educational needs, racial discrimination, and barriers to effective interpretation for patients who are near EOL.</p><p><strong>Results: </strong>Medical interpreters (n = 162) generally report high self-efficacy in interpreting conversations about EOL care but have lower scores regarding the communication and decision-making subscale compared to symptom management subscale (Diff=0.90 (95% CI 0.48 - 1.32), p<.0001). Many (70.4%) of the interpreters indicated that they never or seldom meet with the patient's medical providers prior to a goals of care meeting and only 52.2% report they are usually or always treated as part of the medical team. Interpreters often received little warning about conversation topics prior to interpreting. Qualitative comments revealed experiences of high emotional distress during and after these conversations. Approximately three quarters of the interpreters indicated they would be interested in receiving education regarding EOL topics. Increased experience as an interpreter was associated with a lower fear of death (r_s=-0.204, p=0.0092 and witnessed discrimination (r_s=0.179, p=0.0236).</p><p><strong>Conclusion: </strong>Although self-efficacy for interpreting EOL conversations is generally high, interpreters desire education about EOL care. Interventions are also needed to address the high emotional toll of interpreting EOL conversations. Education and training about EOL care may help them to not only convey information accurately but also cope with emotional nuances characteristic of these significant conversations, ultimately elevating the quality of care for patients and family members in vulnerable and important moments.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143586033","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":"Perioperative Integration of Palliative Care and Urology for Patients With Serious Urologic Illness: A Qualitative Need Finding Inquiry.","authors":"Bhagvat J Maheta, Nainwant K Singh, Jonathan Bergman, Cati G Brown-Johnson, Alekhya Gunturi, Nickolas Interrante, John T Leppert, Karl A Lorenz, Isabella G Raspi, Karleen F Giannitrapani","doi":"10.1016/j.jpainsymman.2025.02.472","DOIUrl":"10.1016/j.jpainsymman.2025.02.472","url":null,"abstract":"<p><strong>Context: </strong>Many urologic serious illnesses are treated with surgical procedures, which may put patients at a further risk of diminished quality of life.</p><p><strong>Objective: </strong>To understand stakeholder perceptions on integrating perioperative Palliative Care (PC) for patients with serious urologic illness.</p><p><strong>Methods: </strong>We conducted semi-structured interviews and team-based thematic analysis to consensus with a dual review. Purposefully sampled urologists, palliative care physicians, and clinical team members at fourteen geographically distributed Veteran Health Administration sites were interviewed.</p><p><strong>Results: </strong>We identified one general overall theme, to \"change culture\" so that PC is not a \"last resort,\" and three opportunities along the perioperative continuum for integrating urology and PC. Opportunity 1: Utilizing telehealth and team member role expansion when discussing the initial diagnosis, with surgery as a potential treatment option, allows for multiple conversations \"so they're not rushed in 15 minutes to mentally deal with the new diagnosis.\" Opportunity 2: Creating a process to ensure goal of care conversations occur, since \"urologic procedures can have complications that significantly impact quality of life,\" which \"would require changing how our workflow is structured.\" Opportunity 3: During the preoperative visits, interdisciplinary input and evaluation of the patient prior to surgery allows the patient to \"have a sort of joint meeting with us and the urologist.\" This represented the last point in time to de-escalate and offer nonsurgical options prior to surgery.</p><p><strong>Conclusions: </strong>The study informs future interventions to improve the quality of surgical care by integrating PC with urology in a unified workflow.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143586038","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}