Palliative Medicine最新文献

Background: People with advanced cancer often experience a range of symptoms and reduced well-being. Experience sampling methods, which involve completing multiple smartphone-based questionnaires per day over several days, may offer detailed insights into how these experiences unfold in daily life.

Aim: To evaluate feasibility and acceptability of experience sampling methods in advanced cancer, and its potential to uncover moment-to-moment symptom and well-being fluctuations.

Design: Observational study including baseline measurement, a 7-day experience sampling period with up to 10 assessments per day of symptoms and well-being, and follow-up measurement. We evaluated feasibility through response data and acceptability through a follow-up questionnaire measuring burden, ease-of-use, instruction clarity, and measurement reactivity. We analyzed fluctuations using within-person standard deviations.

Setting/participants: We invited 79 people with advanced breast or lung cancer via two Belgian hospitals; 40 (51%) enrolled.

Results: Thirty-seven participants provided 1703 valid (71% of 2400 scheduled) experience sampling assessments. On 7-point scales, participants reported low burden (M = 2.1, SD = 0.8), high ease-of-use (M = 5.6, SD = 1.2) and instruction clarity (M = 6.5, SD = 0.5), and minimal measurement reactivity (M = 1.3, SD = 0.3). On 0-100 scales, we observed the greatest means of within-person fluctuations across days for tiredness (M_iSD = 16.7, SD = 7.7), feeling relaxed (M_iSD = 13.0, SD = 7.3), and activity limitations (M_iSD = 12.4, SD = 9.9). Higher mean symptom intensity generally corresponded with greater within-person fluctuations.

Conclusion: Experience sampling methods proved feasible and acceptable for people with advanced cancer, effectively capturing individuals' unique symptom and well-being fluctuations in daily life. The methods are a promising avenue to enhance personalized care and improve quality of life by revealing the mechanisms behind individuals' fluctuations.

Background: The nursing home population is expanding and presenting with increasing medical complexity. Specialist palliative care services collaborate with nursing homes to enhance quality of life for residents with advanced disease through timely identification and provision of palliative care. However, these efforts are often limited by workforce shortages, resource constraints, and a lack of clarity on how specialist palliative care can be effectively integrated into nursing home practice.

Aim: To identify and map integrated models of specialist palliative care in nursing homes, describe their core components, and summarise reported evaluation outcomes.

Design: A scoping review guided by Arksey and O'Malley's framework was conducted.

Data sources: Six databases (PubMed, Web of Science, Scopus, CINAHL, and Cochrane CENTRAL) were searched from inception to end October 2025. Studies describing SPC delivery integrated with routine nursing home care were included.

Results: Twenty-three studies were included. Two integrated models were identified: (1) Specialist Consultation Services and (2) Palliative Case Management. Both involved interdisciplinary SPC teams supporting nursing home staff through shared expertise, staff training, and quality improvement initiatives. Specialist Consultation Services provided on-demand, resident-specific consultations, while Palliative Case Management adopted a proactive, team-based approach incorporating case conferences, and palliative care rounds to address residents' ongoing needs.

Conclusion: Two complementary models of integrated specialist palliative care in nursing homes were identified. Findings highlight shared and unique components that can inform development of modular, context-appropriate palliative care models tailored to nursing home capacities and resources.

Background: Cancer remains a leading global health burden. Artificial intelligence offers new opportunities to address complex physical and psychological symptoms in palliative and supportive cancer care. Despite rapid advances, including large language models, these technologies have not been consistently reviewed in this context, highlighting a gap in the synthesised literature.

Aim: To map current evidence on how artificial intelligence is implemented in palliative and supportive care for people with cancer and their caregivers, and to identify associated challenges and future directions.

Design: Scoping review guided by the Joanna Briggs Institute (JBI) framework.

Data sources: We searched PubMed, CENTRAL, PsycINFO, and CINAHL databases, along with grey literature, up to 17 September 2024, and manually screened reference lists.

Results: Of 2618 records screened, 199 studies were included. Most applications supported healthcare professionals, mainly for predictive purposes such as prognosis, symptom monitoring, and treatment-related adverse events. Machine learning was the predominant approach, reflecting reliance on structured clinical data. Publications increased markedly after 2020, with a sharp rise from 2022 onwards. Only 26 studies involved direct use by people with cancer or their caregivers, and large language model-based applications remained rare, indicating limited patient-facing use.

Conclusions: Artificial intelligence is increasingly being applied in palliative and supportive care, yet applications designed for direct patient or caregiver use remain scarce. Further efforts should prioritise the development and validation of ethically sound, clinically integrated artificial intelligence tools to support person-centred palliative and supportive care.

Background: Quantifying palliative care needs and whether they are met is essential for effective service planning and provision. Estimates of palliative care needs are widely reported but less is known about unmet needs, with no accepted definition of this construct or guidance on how to measure it.

Aim: To investigate how unmet palliative care needs for adults with advanced life-limiting illness have been defined, measured, and reported in the evidence.

Design: Scoping review following the Joanna Briggs Institute guidelines: protocol registered on Open Science Framework (10.17605/OSF.IO/M8DHA).

Data sources: In October 2024, we searched MEDLINE, EMBASE, CINAHL, and PsycINFO for quantitative and mixed-methods studies published after 2000, with backward and forward citation and manual searching of grey literature. Data on definitions, measurement and reporting of unmet needs were extracted, charted, and summarised narratively using inductive content analysis and framework synthesis.

Results: Seventy studies were included: 9 reviews and 61 primary evidence studies from 16 countries. Only 11 (16%) studies explicitly defined unmet palliative care needs. We identified three approaches to measurement of unmet palliative care needs: (1) prevalence of symptoms and concerns; (2) access to services (e.g. specialist palliative care); and (3) sufficiency of service provision to resolve symptoms and concerns.

Conclusions: This novel review identifies a lack of consensus in defining, measuring and reporting unmet palliative care needs. We propose three distinct approaches to conceptualising unmet palliative care needs and outline their strengths and limitations. Practical guidance on their use is provided to support researchers, clinicians, and policymakers in selecting appropriate approaches for assessment and reporting.

Background: Patient-reported outcome measurement supports high quality patient-centred palliative care. Little is known about whether their digital application is feasible in palliative home care.

Aim: To test the feasibility of digital patient-reported outcome measure (ePROM) in specialist palliative home care (SPHC)Design:A feasibility study employing a mixed-methods design (Palli-MONITOR Phase II). The tested ePROM intervention was based on the electronic version of the Integrated Palliative Care Outcome Scale (eIPOS). Data collection included the recruitment and drop-out rates, ePROM user characteristics and information on technical feasibility, and focus groups with SPHC professionals. Descriptive statistics were used to analyse the quantitative data, while focus groups were analysed using the framework approach. Integrated analysis was conducted through joint display.

Setting/participants: Four German SPHC teams; patients used personal devices to complete eIPOS, with data sent to the SPHC electronic medical record; professionals joined focus groups.

Results: The overall recruitment rate was 4.7% (82/1744), and 22.7% (82/361) among eligible patients. 60/82 patients completed the study. A total of 470 eIPOS forms were submitted to the SPHC teams. The rate of non-responses for closed-ended IPOS-items was low (max. 5.3%). Professionals noted that recruitment was challenged by patients' unstable conditions, short care duration, time constraints, team attitudes and technical barriers like limited internet access or device unfamiliarity.

Conclusion: Not all patients in SPHC can use ePROMs due to limited life expectancy and technical barriers. However, consistent and complete use of eIPOS forms indicates that it is feasible for digitally literate patients and can effectively support care.

Background: Mobility loss is a common symptom in people with advanced cancer and is associated with reduced function and quality of life. While its physical consequences are well documented, less is known about how individuals and their families experience and adapt to these changes over time.

Aim: To explore how individuals with advanced cancer and their caregivers experience and respond to mobility loss.

Design: A qualitative longitudinal study using Interpretative Phenomenological Analysis. Participants completed two semi-structured interviews, with follow-ups prompted by changes in mobility.

Setting/participants: Twelve participants (10 people with advanced cancer, 2 caregivers) were recruited from hospital services, hospices, and cancer charities across England. Interviews were conducted 6-24 weeks apart in person, online, or via telephone.

Results: Four interrelated themes were identified: (i) Fractured embodiment: Loss of the mobile self; (ii) Mobility as a cornerstone: Disruption to the fabric of daily life; (iii) Resisting and reframing loss of mobility; and (iv) Mobility loss: The unseen symptom. Mobility loss disrupted identity, agency, and participation, and led to reconfigured family roles. Coping with mobility change was dynamic and involved reframing expectations and negotiating autonomy. Participants often faced delayed or absent support, with unmet mobility needs frequently overlooked by clinicians.

Conclusions: Mobility loss in advanced cancer is not only a symptom of disease, but also a personal and relational disruption. Recognising it as a multidimensional experience underscores the need for holistic, anticipatory care that supports both physical functioning and the emotional realities of serious illness.

Background: There is a lack of evidence to guide the administration of phenobarbital for managing refractory symptoms in paediatric palliative care patients at home during the terminal phase.

Case presentation: Three terminal home-based paediatric cases with refractory symptoms that caused significant distress to both the child and family during the final days of life. All three cases had several changes in medications before receiving phenobarbital.

Case management: The first case had a loading dose of phenobarbital based on an adult guideline; the second case commenced a continuous phenobarbital infusion without a loading dose of phenobarbital; and the final case had a weight-based loading dose.

Case outcome: In the absence of paediatric clinical guidelines for the use of phenobarbital in refractory symptom management, a weight-based loading dose of phenobarbital before commencing a continuous infusion provided enhanced symptom management when compared with a loading dose using adult guidance or the absence of one.

Conclusion: Further research is needed on the administration of a loading dose of phenobarbital for managing terminal refractory symptoms in the paediatric palliative care population during the terminal phase. This will help to establish evidence-based guidelines for paediatric palliative sedation, ensuring appropriate relief of refractory symptoms for a peaceful death at home.

Background: Transitioning from hospital to community represents a vulnerable stage in the palliative care journey for patients with advanced illness. The decision regarding care setting is often shaped by multiple factors and involves a range of challenges and burdens.

Aim: To synthesise the decision-making experiences of patients with advanced illness and their caregivers during transitions from hospital to community palliative care.

Design: A systematic review of qualitative studies. Thomas and Harden's thematic analysis approach was used for data synthesis. The review protocol was registered in PROSPERO (CRD42023494617).

Data sources: PubMed, Web of Science, The Cochrane Library, Embase, CINAHL, CNKI, WanFang and Vip were searched up to 22 November 2023.

Results: Ten papers were included in this review. Three themes emerged: (a) perceived insecurity of transfer, highlighting perceived risks associated with transitions and the resulting decision-making difficulties; (b) balancing priorities in care, reflecting how patients and caregivers weigh multiple considerations, including medical support, caregiving capacity and personal commitment; and (c) love and belonging-regaining meaning of lives, illustrating the spiritual meaning of care settings for patients and caregivers.

Conclusions: Patients with complex psychosocial needs and their caregivers were particularly vulnerable during the decision-making process, especially when external support was insufficient. Therefore, healthcare providers are recommended to actively engage by enhancing communication skills and utilising decision aid tools to provide comprehensive and sufficient information to patients and caregivers.

Background: Therapeutic advances have significantly extended survival for certain groups of patients with incurable cancer, creating a growing population living long-term with incurable cancer. However, the absence of standardized definitions and terminology has contributed to limited recognition of this distinct group and their specific care needs.

Aim: To achieve consensus on definitions and terminology for patients living long-term with incurable cancer by incorporating perspectives of patients, informal caregivers, healthcare professionals, and other relevant stakeholders.

Design: A modified hybrid Delphi study, comprising focus groups and a three-round Delphi consensus process.

Setting/participants: Three focus groups were conducted with patients (n = 11), informal caregivers (n = 4), and healthcare professionals (n = 6). The multidisciplinary expert group comprised medical specialists (n = 5), epidemiologists (n = 3), and patient advocates (n = 2). The Delphi study involved 78 panelists (73 unique respondents) divided into three subpanels: patients and informal caregivers (n = 22), healthcare professionals (n = 36), and other stakeholders (n = 20). All participants were from the Netherlands.

Results: We achieved 88% consensus on the terminology: Patients living long-term with incurable cancer. Consensus was reached on the definition (94%) for patients living for two or more years with: (1) incurable metastatic cancer, (2) incurable hematological malignancies, (3) incurable locally advanced cancer, or (4) patients with exceptionally long survival for their cancer type, despite not meeting the 2-year criterion.

Conclusions: This modified hybrid Delphi study established the first consensus-based framework for patients living long-term with incurable cancer, providing essential groundwork for improved recognition and tailored care approaches for this population.