Journal of pain and symptom management最新文献

{"title":"Distributed Opioids in Morphine Equivalent: A Global Measure of Availability for Palliative Care.","authors":"Felicia Marie Knaul, Héctor Arreola-Ornelas, Xiaoxiao J Kwete, Afsan Bhadelia, Stefano Berterame, Stephen R Connor, Liliana De Lima, Julia Downing, Eric L Krakauer, Oscar Méndez-Carniado, Tania Pastrana, Pedro E Pérez-Cruz, Russell K Portenoy, William E Rosa, Michael Touchton, Valentina Vargas Enciso, Lukas Radbruch","doi":"10.1016/j.jpainsymman.2024.10.026","DOIUrl":"10.1016/j.jpainsymman.2024.10.026","url":null,"abstract":"<p><strong>Context: </strong>Estimates of serious health-related suffering (SHS) demonstrate immense unmet need for palliative care, predominately in low- and middle-income countries (LMICs). Because opioids are essential medicines in palliative care (PC), measuring their availability can be used to evaluate the capacity of health systems to meet need.</p><p><strong>Objectives: </strong>Present the methodology for calculating Distributed Opioids in Morphine Equivalents (DOME)- introduced in the Lancet Commission on Global Access to Palliative Care and Pain Relief report - and how it can be used as a simple indicator to quantify unmet pain relief and PC need.</p><p><strong>Methods: </strong>Using International Narcotics Control Board (INCB) data, DOME applies relative potency estimates to convert the annualized quantities of clinically appropriate opioids procured by a country to oral morphine equivalent milligrams. To quantify unmet need, an expert group proposed health condition-specific estimates for opioid need and used available data on the burden of SHS to posit the annual opioid quantity required by country for symptomatic treatment of pain or breathlessness. Comparing this to DOME generates DOME%SHSNEED, the proportion of opioids needed for palliative care that can be fulfilled by the opioid procured by a country during a year.</p><p><strong>Results: </strong>DOME and DOME%SHSNEED can be used to measure, over time, the capacity of countries to meet PC need, as a key component of universal health coverage. Identifying access gaps disproportionately impacting LMICs can promote better health system performance and guide countries and institutions in policy making.</p><p><strong>Conclusion: </strong>DOME and DOME%SHSNEED can be used to monitor health system progress to redress disparities and promote access to medically indicated opioid therapy in palliative care.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"204-215"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142568314","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":"\"Mr. Smith Has No Mealtimes\": Minimal Comfort Feeding for Patients with Advanced Dementia.","authors":"Hope A Wechkin, Paul T Menzel, Elizabeth T Loggers, Robert C Macauley, Thaddeus M Pope, Peter L Reagan, Timothy E Quill","doi":"10.1016/j.jpainsymman.2024.11.001","DOIUrl":"10.1016/j.jpainsymman.2024.11.001","url":null,"abstract":"<p><p>While Comfort Feeding Only is appropriate for patients with advanced dementia, its emphasis on assiduous hand-feeding that may prolong life for years fails to accommodate the preferences of those who do not want to continue living with this illness. Some have proposed advance directives to completely halt the provision of oral nutrition and hydration once a person has reached an advanced stage of dementia. However, these directives may fail to address patients' discomfort, caregivers' obligations, or current care and regulatory standards when patients reside in facilities. In response to these dilemmas, we introduce Minimal Comfort Feeding (MCF). Rather than offering food and liquids proactively as with Comfort Feeding Only, caregivers provide nutrition and hydration only in response to signs of hunger and thirst. While further study is required to define and negotiate challenges in operationalizing this approach, MCF provides a framework that resolves competing ethical and clinical considerations in caring for those with advanced dementia.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"216-222"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142622322","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 Long Walk Back.","authors":"Sumathi Misra","doi":"10.1016/j.jpainsymman.2023.11.010","DOIUrl":"10.1016/j.jpainsymman.2023.11.010","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"e189-e190"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138477974","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":"Validation of Pediatric Self-Report Pain Scales in Sub-Saharan Africa: A Systematic Review.","authors":"Stephen Rineer, Derek Kwakye, Emmanuela E Ambrose, Iii Don P Jason, Luke R Smart","doi":"10.1016/j.jpainsymman.2024.09.023","DOIUrl":"10.1016/j.jpainsymman.2024.09.023","url":null,"abstract":"<p><strong>Context: </strong>Pediatric self-report pain scales must be validated in cultural/language contexts to provide optimal pain management. Sub-Saharan Africa included vast numbers of people groups, cultures, and languages.</p><p><strong>Objective: </strong>This systematic review sought to identify studies that validated a self-report pediatric pain scale within a sub-Saharan African context.</p><p><strong>Method: </strong>We searched CINAHL, EMBASE, and PubMed combining four concepts: children, pain, sub-Saharan Africa, and scales. Two independent reviewers screened abstracts for the inclusion criteria: English, prospective studies, a pediatric population, and conducted in sub-Saharan Africa. Full text of qualifying citations was obtained.</p><p><strong>Results: </strong>Of 1591 citations identified, six were included. Self-report pain scales included the Faces Pain Scale - Revised (FPS-R), Faces Pain Scale, McGill Questionnaire, Numerical Rating Scale (NRS), Oucher Pain Scale and Visual Analog Scale (VAS). Validation characteristics varied from construct validity (two studies) to convergent validity (three studies) and discriminant validity (three studies). Methods included qualitative and quantitative approaches. Pearson/Spearman's correlation coefficients were strongest between self-report pain scales and weakest when compared to observational scales. The interview-based studies also assessed decision making process, comprehension, ease of use, pain perception, gender, and societal roles. Languages included were English, Afrikaans, Xhosa, Amharic, Swahili, Grammar English, Cameroonian Pidgin English and French.</p><p><strong>Conclusion: </strong>5 countries in Sub-Saharan Africa have a self-report pediatric pain scale validated in their national language/context. Validation methods varied widely from qualitative to quantitative, including convergent, discriminant and face validity. Given the burden of pediatric pain in sub-Saharan Africa, further work is required to provide culturally appropriate and language-specific pain tools.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"e103-e112"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142468139","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":"Pain in Palliative Cancer Patients - Analysis of the German National Palliative Care Registry.","authors":"Markus Ramm, Man Long Chung, Kathrin Schnabel, Alexander Schnabel, Johanna Jedamzik, Michaela Hesse, Michaela Hach, Lukas Radbruch, Martin Mücke, Rupert Conrad","doi":"10.1016/j.jpainsymman.2024.10.030","DOIUrl":"10.1016/j.jpainsymman.2024.10.030","url":null,"abstract":"<p><strong>Context: </strong>Palliative care aims to improve the quality of life in patients with progressive diseases such as cancer. Effective cancer pain management is a major challenge of palliative treatment. Empirical data on the prevalence of cancer pain, the efficiency of pain treatment and influencing factors are scarce.</p><p><strong>Objectives: </strong>Here, we investigated pain in cancer patients treated on inpatient palliative care wards in Germany.</p><p><strong>Methods: </strong>N = 4779 data sets provided by the German Palliative Care Registry from yearly evaluation periods between 2015 and 2020 were included. Pain ratings were assessed by professionals through a checklist of symptoms and problems (HOPE-SP-CL).</p><p><strong>Results: </strong>More than half of the included patients suffered from moderate/severe pain at the beginning of inpatient palliative care and in 71% of these patients, pain relief was achieved at the end of inpatient treatment. Pain intensity, depression and ECOG performance status at admission were weak predictors of later pain relief. The highest pain intensity at the beginning and least pain relief were found in patients with bone and cartilage cancer. The highest percentage of adequate pain control (81%) was seen in 2020.</p><p><strong>Conclusion: </strong>Data from the German Palliative Care Registry confirmed that although increasingly better addressed over the years, insufficiently controlled cancer pain remains a challenge for palliative care units. Patient-specific (e.g. psychological comorbidity) and cancer-related (e.g. bone or cartilage cancer) risk factors for poor pain treatment underline the need for individualized multimodal pain management including psychological support.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"165-174"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142590645","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":"Impact of Diagnosis Nondisclosure on Quality of Dying in Cancer Patients: A Bereavement Study.","authors":"Yusuke Hiratsuka, Yoko Nakazawa, Mitsunori Miyashita, Tatsuya Morita, Yasuyuki Okumura, Yoshiyuki Kizawa, Shohei Kawagoe, Hiroshi Yamamoto, Emi Takeuchi, Risa Yamazaki, Asao Ogawa","doi":"10.1016/j.jpainsymman.2024.10.036","DOIUrl":"10.1016/j.jpainsymman.2024.10.036","url":null,"abstract":"<p><strong>Context: </strong>Patients should be optimally informed about their illness for patients' autonomy and shared decision-making. However, diagnosis nondisclosure to patients is traditionally widespread in Japanese culture with family-oriented autonomy. There is insufficient research on quality of death (QOD) and quality of care (QOC) among patients who are not told their diagnosis.</p><p><strong>Objectives: </strong>This study aimed to examine the impact of diagnosis nondisclosure on QOD and QOC in cancer patients.</p><p><strong>Methods: </strong>We performed a secondary analysis of a cross-sectional, nationwide mortality follow-back survey. The bereaved families responded to the questionnaire. Measurements included decedents' QOC, QOD, and bereaved families' outcomes. After using the propensity score matching method based on the covariates which can affect nondisclosure actions to compare the \"disclosure\" group and \"nondisclosure\" group, we compared differences in QOC, QOD, and bereaved families' outcomes between the two groups.</p><p><strong>Results: </strong>Of the 110,990 family members who were sent the questionnaires, we finally analyzed 46,672 responses. The disclosure group and nondisclosure group included 42,300 (90.6%) and 4,372 (9.4%) decedents, respectively. Most of the QOD domains (14/18) showed significantly higher scores in the disclosure group compared with the nondisclosure group. In terms of QOC domains, all domains showed higher scores in the disclosure group. Respondents in the disclosure group reported higher overall care satisfaction.</p><p><strong>Conclusion: </strong>We demonstrated that overall QOD and QOC in decedents with cancer were significantly higher in decedents with explicit cancer diagnoses. Furthermore, bereaved family members' outcomes were better among the family members of decedents with an explicit cancer diagnosis.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"196-203"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142604966","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":"Barriers to Serious Illness Conversations Among Patients with Advanced Cancer: A Qualitative Study.","authors":"Samantha Hanley, Cody E Cotner, Anny Fenton, Alexi A Wright, Christopher R Manz","doi":"10.1016/j.jpainsymman.2024.10.034","DOIUrl":"10.1016/j.jpainsymman.2024.10.034","url":null,"abstract":"<p><strong>Purpose: </strong>Serious illness conversations (SICs) are discussions between clinicians and cancer patients about illness understanding, information preferences, and goals of care. Interventions to prompt SICs increase SIC rates and improve care delivery near the end of life. This embedded substudy examined SIC barriers and facilitators among \"refractory\" patients without an SIC despite enrollment in an SIC clinical trial.</p><p><strong>Design, setting, and population: </strong>We recruited advanced cancer patients with no documented SIC 60 days after randomization in a clinical trial of patient- and clinician-nudges to engage in SICs. We conducted semi-structured interviews with patients and their caregivers if present and brief email surveys with patients' oncologists. We used qualitative content analysis to identify themes related to SIC barriers and facilitators and to identify strategies to improve SICs.</p><p><strong>Results: </strong>Of 44 participants, 19 were patients, 10 were caregivers, and 15 were oncologists. Themes of SIC barriers and facilitators included (1) how patients coped with their illness, which shaped their readiness for SICs; (2) clinician communication style, which shaped ease of having an SIC; (3) prognostic uncertainty and disease stability, which could prompt or justify delaying an SIC; and (4) family members' presence, which could instigate an SIC. Regarding ways to improve SIC nudges, patients and caregivers had mixed perspectives but often highlighted a preference for interventions with personal touches.</p><p><strong>Conclusions: </strong>Patient readiness remains an important barrier even after targeted SIC interventions. Future SIC interventions should consider approaches tailored to patient communication preferences and interventions involving personal interactions.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"183-189.e4"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142622323","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":"Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative Study.","authors":"Deborah Feifer, Alexandra F Merz, Madeline Avery, Erika Tsuchiyose, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Joanne Wolfe, Veronica Dussel, Maria Laura Requena","doi":"10.1016/j.jpainsymman.2024.10.001","DOIUrl":"10.1016/j.jpainsymman.2024.10.001","url":null,"abstract":"<p><strong>Background: </strong>Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints.</p><p><strong>Objectives: </strong>To explore parents' perspectives on reporting about child symptoms and quality of life (QoL) concurrently with their child in the context of pediatric advanced cancer.</p><p><strong>Methods: </strong>This qualitative study was embedded in the PediQUEST Response Study, a randomized controlled trial of timely palliative care integration in children with advanced cancer. Over 18 weeks, study dyads (children ≥5 years old and one parent) completed weekly e-PROs assessing symptoms and QoL. Using a grounded theory approach, we ran a secondary analysis of end-of-study semi-structured parent interviews to examine their views on concurrent reporting of symptoms.</p><p><strong>Results: </strong>Out of 110 randomized dyads included in this analysis, 77 parents completed an exit interview. Most were White non-Hispanic mothers. Parent reflections on concurrent reporting of child symptoms and QoL are summarized in the following themes: symptom experience is subjective, parent and child viewpoints are unique, parents ask fewer questions as they adapt to child treatment, and children may hesitate to share symptoms. To better grasp their child's experience, parents developed proactive communication strategies.</p><p><strong>Conclusion: </strong>Interviewed parents acknowledged that parent report and child self-report are distinct and complementary. Their perspectives provide guidance to clinicians and researchers about the implementation and interpretation of concurrent outcomes measurement in pediatric advanced cancer care.</p><p><strong>Clinicaltrials: </strong>gov NCT03408314.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"e131-e138"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11710963/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142468136","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hypothalamic Hyperphagia in the Hospice Patient: Case Report and Discussion.","authors":"Paul Joseph, Joseph Dixon, Adam Marks","doi":"10.1016/j.jpainsymman.2024.10.031","DOIUrl":"10.1016/j.jpainsymman.2024.10.031","url":null,"abstract":"<p><p>We present a case of insatiable appetite and harmful overeating in a hospice patient that showcases the burden of hypothalamic hyperphagia, a rare complication of brain cancer. While confounders exist such as progression of disease and prior tapering of dexamethasone, in this case the initiation of metformin was associated with substantial appetite reduction and resolution of our patient's debilitating food-seeking behaviors. We will explore metformin as a potential cost-effective option for palliation in a hospice setting and explore some of the physiologic mechanisms involved.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"e147-e149"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142568389","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 Palliative Care Simulation Improves Resident Learning Outcomes: An 11-Year Review.","authors":"Cassandra D Hirsh, Gwendolyn Richner, Miraides Brown, Daniel H Grossoehme, Brian Harrell, Sarah Friebert","doi":"10.1016/j.jpainsymman.2024.10.028","DOIUrl":"10.1016/j.jpainsymman.2024.10.028","url":null,"abstract":"<p><strong>Context: </strong>Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric palliative care (PPC) physician is uniquely suited to mentor residents and fellows learning to lead difficult conversations through simulation. Co-facilitation of the simulated difficult conversation by a bereaved parent or family member enhances the learning experience.</p><p><strong>Objectives: </strong>To report 11-years' experience simulating difficult conversations with bereaved parent-actors.</p><p><strong>Methods: </strong>PPC physicians developed two simulations to teach difficult conversations to clinical learners at a midwestern quaternary pediatric medical center. Bereaved parents and hospital chaplains co-facilitated the simulation. The first portrayed the death of an infant following emergency resuscitation, and the second, a goals-of-care conversation with the parent of a child with a degenerative condition. A de-novo evaluation rubric was prepared using the six Accreditation Council for Graduate Medical Education (ACGME) Core Competencies to evaluate the participant's performance in the simulation.</p><p><strong>Results: </strong>For the first simulated scenario (N = 194 residents; N = 16 fellows), residents improved significantly on 16/21 ACGME-based criteria between encounters; for the second (N = 118 residents; N = 14 fellows), residents improved significantly on 10/21 criteria. Fellows' performance did not improve significantly in either scenario, but they presented with high baseline scores.</p><p><strong>Conclusions: </strong>Simulations with bereaved parent actors improved general pediatrics residents' performance and comfort during difficult conversations and are transportable to diverse settings.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"e178-e188"},"PeriodicalIF":3.2,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142622354","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}