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'Constipation': One word, many meanings amongst persons with cancer: An observational study. “便秘”:一项观察性研究表明,一个词在癌症患者中有多种含义。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-05-01 Epub Date: 2025-03-12 DOI: 10.1177/02692163251325711
Andrew Davies, Norah Fagan, Jenny Power, Amy Taylor
{"title":"'Constipation': One word, many meanings amongst persons with cancer: An observational study.","authors":"Andrew Davies, Norah Fagan, Jenny Power, Amy Taylor","doi":"10.1177/02692163251325711","DOIUrl":"10.1177/02692163251325711","url":null,"abstract":"<p><strong>Background: </strong>Constipation is common in people with advanced cancer and is associated with significant morbidity and health economic burden, but it is often sub-optimally managed. Despite international consensus diagnostic criteria for functional and opioid-induced constipation (Rome IV diagnostic criteria), the term 'constipation' means different things to different people, impacting assessment, diagnosis and management.</p><p><strong>Aim: </strong>To investigate the association between persons with advanced cancer self-reporting of constipation, response to the Rome IV diagnostic criteria statements for opioid-induced constipation and differences according to personal demographics.</p><p><strong>Design: </strong>Multicentre prospective observational study.</p><p><strong>Setting/participants: </strong>Twenty-four community, hospice and hospital research sites in 10 European countries recruited 1200 adults with cancer taking opioids for cancer/cancer-treatment related pain.</p><p><strong>Results: </strong>In response to the simple question <i>'Are you constipated?'</i>, 549 (45.5%) participants replied 'yes', 588 (49%) replied 'no' and 59 (5%) were 'unsure', but 713 (59.5%) participants met the Rome IV diagnostic criteria. Only 439 (61.5%) participants that met these criteria answered the simple question positively, whilst 230 (39%) answered negatively, although there was a statistically significant association between responses to the simple question and the criteria (χ<sup>2</sup>(1, <i>N</i> = 1136) = 149.945, <i>p</i> = 0.00001). There were certain significant differences in self-reporting according to age and country of origin.</p><p><strong>Conclusions: </strong>There is disparity between patients' self-reporting of constipation and the Rome IV diagnostic criteria. People with advanced cancer, especially those receiving opioid analgesics, need to be regularly assessed for constipation, but the use of a single question (<i>'Are you constipated?'</i>) is inadequate.Registry: European Study of Opioid Induced Constipation (E-StOIC), NCT05149833, https://clinicaltrials.gov/study/NCT05149833, 08/12/2021.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"553-562"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606140","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}
引用次数: 0
Validating the socio-spiritual items of the Utrecht Symptom Diary-4 Dimensional: Content and construct validity. 验证乌得勒支症状日记的社会精神项目-4维度:内容和结构效度。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-05-01 Epub Date: 2025-02-28 DOI: 10.1177/02692163251321692
Tom Lormans, Everlien de Graaf, Frederieke van der Baan, Carlo Leget, Saskia Teunissen
{"title":"Validating the socio-spiritual items of the Utrecht Symptom Diary-4 Dimensional: Content and construct validity.","authors":"Tom Lormans, Everlien de Graaf, Frederieke van der Baan, Carlo Leget, Saskia Teunissen","doi":"10.1177/02692163251321692","DOIUrl":"10.1177/02692163251321692","url":null,"abstract":"<p><strong>Background: </strong>The Utrecht Symptom Diary-4 Dimensional (USD-4D) is a multidimensional Patient-Reported Outcome Measure to monitor symptoms and needs and increase patients' self-efficacy. Assessing the content and construct validity of the USD-4D ensures it accurately measures the intended construct and is contextually relevant.</p><p><strong>Aims: </strong>This study aimed to assess the content and construct validity of the socio-spiritual items of the USD-4D in a population of Dutch patients in the palliative phase of their illness.</p><p><strong>Design: </strong>A multiple method study was performed consisting of a cross-sectional survey and an observational cohort study.</p><p><strong>Participants: </strong>The study population consisted of (a) healthcare providers working with patients in the palliative phase and (b) a cohort of patients with a life limiting illness in all settings supplemented by a cohort of hospice patients.</p><p><strong>Results: </strong>At least 80% of participants positively assessed the items comprehensibility and relevance. About half of the respondents indicated that certain items are missing from the USD-4D. A qualitative analysis of missing topics revealed either topics for monitoring over time or topics underlying the constructs included. For every item, at least 75% of hypotheses were confirmed. One hypothesis for the item \"I can let my loved ones go\" was rejected.</p><p><strong>Conclusions: </strong>This study confirmed the content and construct validity on the socio-spiritual items of the USD-4D. Hence, the USD-4D is a validated PROM suitable to be structurally used in clinical palliative care to signal, monitor and to go into dialogue about social and spiritual aspects of patients' values, wishes, and needs.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"622-634"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033380/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524104","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}
引用次数: 0
Where to for core outcome sets for best care for the dying person? 为临终者提供最佳护理的核心结果集在哪里?
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-05-01 Epub Date: 2025-02-24 DOI: 10.1177/02692163251322741
Mary Miller
{"title":"Where to for core outcome sets for best care for the dying person?","authors":"Mary Miller","doi":"10.1177/02692163251322741","DOIUrl":"10.1177/02692163251322741","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"635"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143493058","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}
引用次数: 0
Off-label drug use in palliative medicine: Delphi study for the consensus of evidence-based treatment recommendations. 姑息医学中的超说明书用药:德尔菲研究对循证治疗建议的共识。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-05-01 Epub Date: 2025-03-15 DOI: 10.1177/02692163251323123
Stefanie Pügge, Aleksandra Dukic-Ott, Julian Baumgärtel, Saskia Jünger, Claudia Bausewein, Constanze Rémi
{"title":"Off-label drug use in palliative medicine: Delphi study for the consensus of evidence-based treatment recommendations.","authors":"Stefanie Pügge, Aleksandra Dukic-Ott, Julian Baumgärtel, Saskia Jünger, Claudia Bausewein, Constanze Rémi","doi":"10.1177/02692163251323123","DOIUrl":"10.1177/02692163251323123","url":null,"abstract":"<p><strong>Background: </strong>Off-label use of drugs is an integral part of everyday clinical practice in palliative medicine. However, it is associated with many uncertainties, that is, drug therapy safety or legal issues including cost coverage. Healthcare professionals often lack time and resources for comprehensive literature search and patient-specific risk-benefit analyses.</p><p><strong>Aim: </strong>The aim of this project is to develop, evaluate and rate agreement/disagreement on treatment recommendations for off-label use in adult palliative medicine.</p><p><strong>Design: </strong>Online Delphi study with two rounds each to rate agreement/disagreement with treatment recommendations for off-label use in adult palliative medicine. An international expert panel consisting of physicians, pharmacists and nurses working in palliative care evaluated previously developed recommendations based on the best available evidence.</p><p><strong>Setting: </strong>/participants:Professionals (physicians, pharmacists, nursing staff) working in inpatient and home palliative care involved in the medication process were recruited as experts to participate. Between 64 and 75 experts participated in the first two Delphi studies.</p><p><strong>Results: </strong>A total of 64/68 recommendations on 21 drugs and 14 applications were agreed upon. Topics related to routes of administration as well as indications for sialorrhea, bronchorrhea, xerostomia, pruritus, singultus, fistula, gastroparesis and hot flashes. Recommendations that reached consensus are available to health care professionals via a free of charge database.</p><p><strong>Conclusion: </strong>For many off-label use applications, it is likely that there will be no registration studies and therefore no drug approvals in the future. The consensus-based recommendations are intended to facilitate individual treatment planning for prescribers and to enable a more reflected handling of off-label use.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"530-542"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033383/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634394","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}
引用次数: 0
Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers. 提前护理计划和生活质量:一项针对年轻痴呆患者及其家庭照顾者的定性访谈研究。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-05-01 Epub Date: 2025-03-15 DOI: 10.1177/02692163251324796
Jasper Maters, Marieke Perry, Ton de Wit, Raymond T C M Koopmans, Marjolein E de Vugt, Christian Bakker, Jenny T van der Steen
{"title":"Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers.","authors":"Jasper Maters, Marieke Perry, Ton de Wit, Raymond T C M Koopmans, Marjolein E de Vugt, Christian Bakker, Jenny T van der Steen","doi":"10.1177/02692163251324796","DOIUrl":"10.1177/02692163251324796","url":null,"abstract":"<p><strong>Background: </strong>The importance of palliative care and advance care planning in dementia is increasingly recognized. However, little is known about the distinct needs and preferences of people with young-onset dementia.</p><p><strong>Aim: </strong>To explore how people with young-onset dementia and their family caregivers experience quality of life, and how these experiences shape their views on the future, palliative care needs, and advance care planning.</p><p><strong>Design: </strong>A qualitative interview study, using inductive thematic analysis.</p><p><strong>Setting/participants: </strong>Ten community-dwelling people with young-onset dementia and their family caregivers from the Netherlands.</p><p><strong>Results: </strong>Four themes were found: sense of self, connection to others, acceptance versus resistance in the face of adversity, and orientation toward the future versus focus on the present. The first two themes represent the main aspects of quality of life. The third theme covers acceptance versus resistance in coping with the disease, support, and the future. The expectations of a decrease in quality of life could adversely affect the attitude toward the future and thus reduce the willingness to engage in advance care planning, which relates to the final theme. Quality of life explicitly influenced treatment decisions for those who engaged in advance care planning.</p><p><strong>Conclusions: </strong>The perception of young-onset dementia and its impact on quality of life varies among people with young-onset dementia and their family caregivers, but common values include a sense of self and connection to others. Advance care planning should be introduced as a way to protect these values and align them with palliative care goals.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"563-573"},"PeriodicalIF":3.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033381/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634392","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}
引用次数: 0
Identifying aspects of physiotherapy and occupational therapy provision in community palliative rehabilitation that could improve outcomes: A realist review. 在社区姑息性康复中确定物理治疗和职业治疗可以改善结果的方面:现实主义回顾。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-04-22 DOI: 10.1177/02692163251331166
Jane Manson, Paul Taylor, Susan Mawson, Joanne Bayly, Carol Keen, Jacqui Gath, Tracy Green, Frances Anderson, Rob Smith, Alicia O'Cathain
{"title":"Identifying aspects of physiotherapy and occupational therapy provision in community palliative rehabilitation that could improve outcomes: A realist review.","authors":"Jane Manson, Paul Taylor, Susan Mawson, Joanne Bayly, Carol Keen, Jacqui Gath, Tracy Green, Frances Anderson, Rob Smith, Alicia O'Cathain","doi":"10.1177/02692163251331166","DOIUrl":"https://doi.org/10.1177/02692163251331166","url":null,"abstract":"<p><strong>Background: </strong>The provision of physiotherapy and occupational therapy in palliative care is often poorly understood. There is currently no guidance on how to deliver these services in the community, potentially leading to unwarranted variation in practice and unmet patient need.</p><p><strong>Aim: </strong>To identify aspects of physiotherapy and occupational therapy provision in community palliative rehabilitation that could improve outcomes.</p><p><strong>Design: </strong>A realist review of the literature following RAMESES standards, with stakeholder input throughout.</p><p><strong>Data sources: </strong>Iterative literature searches were conducted from September 2023 to April 2024. All relevant data sources relating to delivery of physiotherapy and occupational therapy in community palliative care were included.</p><p><strong>Results: </strong>Forty-two international publications were included, published between 2000 and 2023. Five key aspects were identified: (1) Early referral into community palliative rehabilitation. (2) Layered model, basing level of service on complexity of needs. Within this, clinicians without professional qualifications deliver simple interventions after assessment by a qualified physiotherapist or occupational therapist while specialist clinicians review more complex presentations. Services are cohesive by being integrated with primary care, other community services and specialist medical and palliative care and there is representation of physiotherapists and occupational therapists within leadership teams. (3) Holistic assessments form the backbone of the service with personalised interventions tailored to patients' needs and goals. (4) Accessible and flexible services are offered to meet patients' needs throughout their palliative journey. (5) Information and education for patients and carers are available throughout.</p><p><strong>Conclusions: </strong>Integrating these five key aspects of physiotherapy and occupational therapy provision into community palliative rehabilitation could help ensure palliative patients receive the therapy they need.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251331166"},"PeriodicalIF":3.6,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024116","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}
引用次数: 0
An easier way to die?-A qualitative interview study on specialist palliative care team members' views on dying under sedation. 一种更容易的死法?——对专科姑息治疗团队成员对镇静下死亡看法的质性访谈研究。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-04-01 Epub Date: 2025-02-21 DOI: 10.1177/02692163251321320
Jeremias Bazata, Sophie Meesters, Claudia Bozzaro, Violet Handtke, Jan Schildmann, Maria Heckel, Christoph Ostgathe, Claudia Bausewein, Eva Schildmann
{"title":"An easier way to die?-A qualitative interview study on specialist palliative care team members' views on dying under sedation.","authors":"Jeremias Bazata, Sophie Meesters, Claudia Bozzaro, Violet Handtke, Jan Schildmann, Maria Heckel, Christoph Ostgathe, Claudia Bausewein, Eva Schildmann","doi":"10.1177/02692163251321320","DOIUrl":"10.1177/02692163251321320","url":null,"abstract":"<p><strong>Background: </strong>Professionals' personal perceptions of sedated patients in the context of palliative care may influence their opinion on sedation as treatment option. However, little is known of palliative care professionals' perception of patients dying under sedation.</p><p><strong>Aim: </strong>To explore German specialist palliative care team members' views on and perception of the dying process under sedation.</p><p><strong>Design: </strong>Qualitative phenomenological study using semi-structured interviews (<i>n</i> = 59). Interviews took place in-person after recruitment via a contact person and were transcribed verbatim. Framework Analysis was used for analysis.</p><p><strong>Setting/participants: </strong>Physicians, nurses, psychologists, physical therapists, chaplains, and social workers from 10 palliative care units and 7 specialist palliative homecare teams across 12 German cities.</p><p><strong>Results: </strong>Participants' views on patients dying under sedation can be grouped into: (i) those who perceived an influence of sedation on the dying process with and without positive and/or negative connotations and (ii) those who saw no difference between dying with or without sedation. Positive connotations referred to the perception of sedation providing an easier path. Concerns were mainly related to the deprivation of patients regarding a conscious dying. The metaphorical description of sedation as \"sleep\" was common among participants.</p><p><strong>Conclusions: </strong>The wide range of perceptions of patients dying under sedation may be rooted in different judgements regarding aspects of a good death. Clarifying ideals of a good death with professionals, patients, and relatives before sedation may support transparent decision-making and help avoid conflicts or moral distress.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"517-526"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11977801/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143468713","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}
引用次数: 0
Cognitive Authority Theory: Reframing health inequity, disadvantage and privilege in palliative and end-of-life care. 认知权威理论:在姑息治疗和临终关怀中重构健康不平等、劣势和特权。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-04-01 Epub Date: 2025-02-26 DOI: 10.1177/02692163251321713
Katherine J Hunt, Carl R May
{"title":"Cognitive Authority Theory: Reframing health inequity, disadvantage and privilege in palliative and end-of-life care.","authors":"Katherine J Hunt, Carl R May","doi":"10.1177/02692163251321713","DOIUrl":"10.1177/02692163251321713","url":null,"abstract":"<p><strong>Background: </strong>There persist disparities in access to quality palliative and end-of-life care, often based on avoidable injustice. Research and theory to explain this health inequity focuses on structural or individual-based factors, overlooking important relational factors between health professionals, patients and families.</p><p><strong>Aim: </strong>To apply Cognitive Authority Theory in palliative and end-of-life care to explain neglected relational drivers of inequity in access and experience.</p><p><strong>Methods: </strong>Cognitive Authority Theory, a middle-range theory of power relations between individuals and authority over knowledge, was developed from empirical and review data. This paper demonstrates its utility in explaining an overlooked component of inequity in palliative care: interactions between health professionals and patients/caregivers.</p><p><strong>Results: </strong>Using examples from the palliative care literature, we characterise how people who are socially disadvantaged have fewer resources to exploit during consultations with health professionals which makes it difficult for them to have their voices heard, their choices prioritised by others, and to express their expertise. We examine the implications of health professionals' judgements of expertise for care access, experience, involvement and appropriateness. We offer a fresh perspective on the mechanisms by which stereotypes, bias and power imbalances between health professionals and patients reinforce existing health inequities, drawing on the role of social privilege in shaping inequity in palliative care.</p><p><strong>Conclusion: </strong>This paper provides a new language to articulate relational drivers of inequity in palliative care. It explains how to use Cognitive Authority Theory to design and interpret research to determine how healthcare interactions reinforce both social privilege and social disadvantage at end-of-life.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"448-459"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11977813/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143516304","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}
引用次数: 0
'I couldn't live without hope': A qualitative study using reflexive thematic analysis on approaches to hope and prognostic awareness among people with advanced disease. “我不能没有希望”:一项定性研究,使用反思性主题分析方法,对晚期疾病患者的希望和预后意识进行分析。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-04-01 Epub Date: 2025-03-12 DOI: 10.1177/02692163251323558
Miroslava Janoušková, Adam Houska, Sára Víchová, Martin Loučka
{"title":"'I couldn't live without hope': A qualitative study using reflexive thematic analysis on approaches to hope and prognostic awareness among people with advanced disease.","authors":"Miroslava Janoušková, Adam Houska, Sára Víchová, Martin Loučka","doi":"10.1177/02692163251323558","DOIUrl":"10.1177/02692163251323558","url":null,"abstract":"<p><strong>Background: </strong>Hope plays a pivotal role in enhancing the quality of life and coping strategies of individuals living with advanced diseases. The nature of the relationship between hope and prognostic awareness is unclear.</p><p><strong>Aim: </strong>To explore the experiences and meanings of hope and their association with prognostic awareness among people with advanced incurable diseases.</p><p><strong>Design: </strong>Qualitative phenomenological study using reflexive thematic analysis of semi-structured interviews.</p><p><strong>Setting/participants: </strong>Interviews with 24 participants aged 30-99 years with advanced incurable disease were conducted in hospices and hospitals in the Czech Republic.</p><p><strong>Results: </strong>We generated four distinct approaches to hope and prognostic awareness: Technical, Spiritual, Minimalist and Pragmatic. Each approach exhibited unique cognitive, emotional and behavioural dimensions of hope and prognostic awareness. The Technical and Minimalist approaches showed fluctuating hope influenced by medical updates, while the Spiritual and Pragmatic approaches demonstrated stable hope resilient to prognostic information.</p><p><strong>Conclusions: </strong>Recognizing these diverse hope approaches can guide tailored interventions in palliative care. Healthcare providers should adapt their communication strategies based on people's predominant hope orientations to support effective coping and enhance end-of-life care outcomes. This study sheds light on how different individuals navigate hope amidst terminal illnesses, providing insights into the nuanced psychological and emotional dynamics that influence their coping mechanisms.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"473-482"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12084655/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143606141","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}
引用次数: 0
An electronic pre-visit agenda-setting questionnaire in ambulatory palliative care is feasible and acceptable to patients, care partners, and clinicians: A mixed methods evaluation. 门诊姑息治疗的电子会诊前议程设置问卷对患者、护理伙伴和临床医生来说是可行和可接受的:一种混合方法评估。
IF 3.6 2区 医学
Palliative Medicine Pub Date : 2025-04-01 Epub Date: 2025-02-25 DOI: 10.1177/02692163251321327
Matthew M Wilson, Kathleen Broglio, Maxwell T Vergo, Amber E Barnato, Amelia M Cullinan, Julie R Doherty, Joel R King, Anna Marie Devito, Anne B Holmes, Jennifer J Hinson, Kimberley R Holt, Megan M Holthoff, Emily G Kobin, Alaina R Legere, Eugene C Nelson, Elizabeth A O'Donnell, Catherine H Saunders, Stephanie C Tomlin, Kathryn B Kirkland, Aricca D Van Citters
{"title":"An electronic pre-visit agenda-setting questionnaire in ambulatory palliative care is feasible and acceptable to patients, care partners, and clinicians: A mixed methods evaluation.","authors":"Matthew M Wilson, Kathleen Broglio, Maxwell T Vergo, Amber E Barnato, Amelia M Cullinan, Julie R Doherty, Joel R King, Anna Marie Devito, Anne B Holmes, Jennifer J Hinson, Kimberley R Holt, Megan M Holthoff, Emily G Kobin, Alaina R Legere, Eugene C Nelson, Elizabeth A O'Donnell, Catherine H Saunders, Stephanie C Tomlin, Kathryn B Kirkland, Aricca D Van Citters","doi":"10.1177/02692163251321327","DOIUrl":"10.1177/02692163251321327","url":null,"abstract":"<p><strong>Background: </strong>To provide patient-centered healthcare for people with serious illness, healthcare teams must elicit needs, goals, preferences, and values from patients and care partners.</p><p><strong>Aim: </strong>Describe feasibility and acceptability of an electronic pre-visit agenda-setting questionnaire for patients and care partners to identify these topics before ambulatory palliative care visits.</p><p><strong>Design: </strong>Concurrent mixed-methods formative evaluation of questionnaire feasibility and acceptability. We extracted questionnaire responses and patient characteristics from electronic health records and sent anonymous post-visit patient experience surveys. Researchers conducted thematic analysis on semi-structured interviews with participants.</p><p><strong>Setting/participants: </strong>Patient participants had an active patient portal account and ambulatory visit at a free-standing palliative care clinic in a tertiary academic medical center in rural Northeastern United States between June 2021 and March 2023. Clinic staff included physicians, nurse practitioner, social worker, nurses, and scheduling secretary. Most visits were conducted via video or telephone.</p><p><strong>Results: </strong>Completion rate was 50% for pre-visit questionnaires (2107 of 4204 visits). Patients completing post-visit surveys (following 859 visits) reported the pre-visit questionnaire was easy to complete (75%) and helped their conversations with clinicians (79%). Patients who believed their clinician reviewed their responses rated shared decision-making higher (82%) than those who did not (59%). Semi-structured interviews with five patients, two care partners, and seven clinicians identified four themes: the questionnaire engages patients in pre-visit planning, incorporates care partners into the care team, facilitates care for the care partner, and improves perceived efficiency and care quality.</p><p><strong>Conclusions: </strong>An electronic pre-visit questionnaire was feasible and acceptable in ambulatory palliative care visits.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"507-516"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143493054","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}
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