CONTEXT:Assessment of the global burden of serious health-related suffering (SHS) is critical to determining the need for palliative care. This burden is disproportionately concentrated in low- and middle-income countries (LMICs), where palliative care access is suboptimal or entirely lacking. Previous SHS estimations have provided a vital indicator for health system performance assessment and a framework for tracking progress on palliative care-a cornerstone of universal health coverage. OBJECTIVES:This brief report provides updated SHS estimates for 2021 and 2023, anchored in mortality and prevalence data from Global Burden of Disease (GBD) 2023. Specifically, it presents the global burden of SHS in 2023 and analyzes shifts between 2021 and 2023 across associated health conditions, country income group, and geographic region. METHODS:Utilizing previously published SHS 2.0 methodology, condition-specific multipliers are applied to GBD 2023 data to generate updated estimates of palliative care need across 21 health conditions, distinguishing between decedents (accounted for in mortality figures) and nondecedents (accounted for in prevalence figures). The analysis compares 2021 and 2023 estimates, stratified by condition, country income group, geographic region and decedents versus nondecedents, to identify trends in SHS independent of population growth. RESULTS:In 2023, an estimated 73.6 million individuals experienced SHS, with 76.2% of this burden concentrated in LMICs. Nondecedents comprised the majority of global SHS (62.4%), reaching as high as 71.0% in low-income countries (LICs). Regionally, sub-Saharan Africa accounted for the largest share of global SHS (25.8%) and the highest per capita burden. While cancer was the leading driver of SHS in high-income countries (HICs) (42.7%), HIV/AIDS remained the top cause across all LMICs (20.2%). Between 2021 and 2023, global SHS grew by 3.9%-outpacing population growth (1.8%)-driven by sharp increases in upper-middle-income countries (UMICs) (5.5%) and HICs (5.2%) and notable condition-specific increases in SHS associated with lung disease (18.2%), inflammatory disease of the central nervous system (11.4%), and dementia (7.9%). Moreover, increases in SHS due to cancer were particularly stark in LICs (17.8%), while injuries markedly rose in HICs (15.9%). CONCLUSION:Our findings provide empirical evidence of the expanding need for palliative care globally, establishing SHS as an essential benchmark for health system strengthening. Identified trends in the SHS burden can inform targeted interventions and facilitate the achievement of universal palliative care.
BACKGROUND:The majority of children needing palliative care globally reside in low-income and middle-income countries (LMICs) with limited or no access to such care, resulting in an excess burden of suffering. We aimed to estimate the global burden of serious health-related suffering (SHS) among children aged 0-19 years from 1990 to 2023, providing a measurement tool essential to respond to the need for more effective palliative care policies and services for children. METHODS:We generated refined estimates of palliative care need for children aged 0-19 years for a 30-year time series, spanning 1990 to 2023, by extending and applying the SHS methodology originally introduced by The Lancet Commission on Global Access to Palliative Care and Pain Relief and subsequently updated in 2024. The updated methodology included convening an expert paediatric palliative care panel. First, the panel identified the health conditions specific to children and related parameters for estimation of the total SHS burden in children using epidemiological mortality and prevalence data within the Global Burden of Disease Study 2023 dataset. Second, to estimate the SHS burden among decedents (those who died within the past year) and non-decedents (those who survived but experienced persistent, chronic, or progressive suffering) and quantify the condition-specific palliative care need, for each health condition the panel determined the percentage of deaths or survivors who experienced SHS and thus need palliative care or the ratio of the number of survivors with SHS to the number of deaths. FINDINGS:In 2023, about 10·6 million children aged 0-19 years experienced SHS worldwide, with 96% of these children residing in LMICs. The three health conditions accounting for most of the global SHS burden in children were endocrine, metabolic, blood, and immune disorders (51% of SHS in children), premature birth and birth trauma (18%), and injury, poisoning, and external causes (7%). The annual number of children experiencing SHS changed little between 1990 and 2023, but the SHS burden shifted from primarily decedents toward non-decedents, with non-decedents accounting for 59% of the total burden of SHS in children in 1990 to 81% in 2023. INTERPRETATION:Our findings underscore the crucial need to expand access to high-quality palliative care services for children and adolescents, particularly in LMICs. Our results also highlight the shift from decedent to non-decedent care needs associated with the substantial morbidity experienced by those living with their disease. Specific health-system policies to respond to the need for increased and higher-quality paediatric palliative care, especially interventions and medicines essential to address the unique palliative care needs of children, must be adequately funded to effectively reduce the avoidable burden of SHS among children. FUNDING:University of Miami.
Background Early integration of specialised palliative care improves quality of life and outcomes in advanced cancer, yet its implementation in inpatient oncology remains inconsistent. This study evaluates the utilisation of specialised inpatient palliative care in German hospitals and interprets adoption patterns using Diffusion of Innovations theory. Methods We conducted a retrospective nationwide analysis of hospital cases reimbursed under the German diagnosis-related groups (DRG) system. The analysis included the most common oncological diseases and assessed utilisation of specialised inpatient palliative care overall and stratified by metastatic status, tumour entity, comorbidities, and treating medical specialties. Results Specialised inpatient palliative care was provided in 5.4% of hospital cases involving the most common malignant tumours. Among patients with organ metastases, utilisation increased to a median rate of 15.0% of hospital cases, with the highest rates observed in cases with brain (17.8%), bone (17.0%), and pleural metastases (16.1%). Palliative care involvement correlated positively with hospital mortality. Interpreted through diffusion of innovations theory, utilisation among patients with metastatic disease appears to have reached the tipping point associated with early adopters, while uptake among the early majority remains limited. Conclusion Despite longstanding guideline recommendations, specialised inpatient palliative care remains underutilised in German oncology care. From the perspective of diffusion of innovations theory, failure to move adoption beyond early adopters risks stagnation and prevents palliative care from becoming a routine component of inpatient oncology. To overcome this barrier, clinicians and policymakers should establish systematic referral pathways, implement interdisciplinary referral triggers, actively disseminate evidence on clinical effectiveness, increase awareness, strengthen palliative care training for healthcare professionals, and align reimbursement structures to support earlier and consistent palliative care integration.
Patients with glioblastoma represent a highly vulnerable cohort as they often experience rapid health deterioration with severe symptom burden including neurological, (neuro)psychological, and psychiatric symptoms. The aim of this sub-analysis of the “Early Palliative Care for Patients with Glioblastoma” (EPCOG) trial was to investigate the specific challenges of conducting a multicenter, randomized, controlled, clinical trial in glioblastoma patients testing a specialized palliative care (PC) intervention. We analyzed screening protocols and protocol deviations with respect to number and reasons for non-participation, skipped/delayed visits and attrition using descriptive statistics and content analysis of free-text comments. In total, 41.5
BACKGROUND:Positive effects of early integration of palliative care (EIPC) have been shown for systemic solid malignant tumors. We tested the hypothesis that EIPC improves quality of life (QoL), palliative care (PC) problems and mood in glioblastoma patients and reduces caregiver burden. METHODS:This randomized, rater-blinded, controlled trial conducted in six German university medical centers included glioblastoma patients within four weeks after diagnosis (first/recurrent) and their caregivers. Patients received standard care (control) or standard care and EIPC (intervention) for 12 months. Primary outcome was change in QoL after six months measured by the trial outcome index of the FACT-Br. Data were assessed 3-monthly for up to 24 months. RESULTS:Between 05/2019 and 04/2021 patients were enrolled and randomized to the intervention (n = 109) or control group (n = 108). QoL at month six was in favor of the intervention, however not statistically significant (mean difference 4.1 with 95% CI, -4.4 to 12.6, P = .34; intervention: n = 98 (m = 54/f = 44); control: n = 89 (m = 50/f = 39)). In an analysis adjusted for time of death, performed because of a significant survival difference (control superior to intervention, P = .018), QoL was better in the intervention group (P = .041). Secondary outcomes showed that patients significantly benefited from EIPC regarding PC problems and mood especially after intervention ended, while caregivers did not seem to benefit. CONCLUSIONS:Provided that the survival difference is included in the analysis, EIPC improves QoL in glioblastoma patients. This, in addition to improved mood and PC problems, demonstrates that EIPC sustainably improves 'how to live' but not 'length of life'.
RATIONALE:Estimates of the population prevalence of chronic pain with neuropathic components range from 6% to 10%. Current pharmacological treatments for neuropathic pain help only a minority. New treatments are needed. Cannabis is increasingly promoted in the media as a treatment for chronic pain. This is an update of a review first published in 2018. OBJECTIVES:To assess the benefits and harms of cannabis-based medicines (herbal, plant-based, synthetic) compared to placebo or conventional drugs for chronic neuropathic pain conditions in adults. SEARCH METHODS:We searched CENTRAL, MEDLINE, Embase, and three trial registries, together with reference checking. The latest search date was 29 January 2025. ELIGIBILITY CRITERIA:We selected randomised, double-blind controlled trials of medical cannabis, plant-derived and synthetic cannabinoids, against placebo or any other active treatment for chronic neuropathic pain conditions in adults, with a treatment duration of at least two weeks. We excluded studies whose double-blind duration was less than two weeks and studies which did not explicitly state that the pain was of a neuropathic nature. OUTCOMES:Critical outcomes were the number of participants reporting pain relief of at least 50%, a Patient Global Impression of Change (PGIC) rating of 'much' or 'very much' improved, serious adverse events, and withdrawals due to adverse events. RISK OF BIAS:We assessed the risk of bias (RoB) for seven outcomes reported in three summary of findings tables using the Cochrane RoB 1 tool. SYNTHESIS METHODS:We synthesised results for each outcome using meta-analysis with a random-effects model by calculating absolute risk differences (RD) and standardised mean differences (SMD) with 95% confidence intervals (CI) for dichotomous outcomes and continuous outcomes, respectively. We used GRADE to assess the certainty of evidence for prespecified outcomes. INCLUDED STUDIES:We included six new studies involving 450 participants, along with 15 studies involving 1737 participants from the 2018 review, for a total of 21 studies with 2187 participants. The studies ranged from two to 26 weeks in duration. Sample sizes ranged from 18 to 339 participants. Participants' mean age ranged from 34 to 61 years, and the proportion of women ranged from 0% to 90%. Five studies included participants with central neuropathic pain, 14 studies included participants with peripheral neuropathic pain, and two studies included both types. Seven studies administered tetrahydrocannabinol (THC)-dominant medicines; nine studies, balanced THC and cannabidiol (CBD) medicines; and five studies, CBD-dominant medicines. Twenty studies compared cannabis-based medicine to placebo, and one study's comparator was dihydrocodeine. We judged the overall risk of bias to be low in six studies, unclear in 10 studies, and high in five studies. SYNTHESIS OF RESULTS:THC-dominant medicines versus placebo. There is no clear evidence for an effect on pain relief of at least 50% (RD 0.14, 95% CI -0.07 to 0.37; 7 studies, 534 participants), PGIC rating of 'much' or 'very much' improved (RD 0.17, 95% CI -0.24 to 0.58; 2 studies, 72 participants), withdrawals due to adverse events (RD 0.03, 95% CI -0.02 to 0.08; 6 studies, 511 participants), serious adverse events (RD 0.02, 95% CI -0.01 to 0.06; 7 studies, 537 participants), pain relief of at least 30% (RD 0.16, 95% CI -0.08 to 0.40; 7 studies, 566 participants), and psychiatric disorder-related adverse events (RD 0.01, 95% CI -0.01 to 0.03; 4 studies, 368 participants), all with very low-certainty evidence. They may increase nervous system adverse events (RD 0.25, 95% CI 0.14 to 0.37; 5 studies, 439 participants; low-certainty evidence). THC/CBD-balanced medicines versus placebo. There is no clear evidence for an effect on pain relief of at least 50% (RD 0.04, 95% CI 0.00 to 0.08; 8 studies, 746 participants) and serious adverse events (RD 0.01, 95% CI -0.02 to 0.03; 11 studies, 1449 participants), both with very low-certainty evidence. The evidence is very uncertain about the effect on nervous system-related (RD 0.39, 95% CI 0.23 to 0.55; 11 studies, 1445 participants) and psychiatric disorder-related adverse events (RD 0.08, 95% CI 0.03 to 0.13; 9 studies, 1375 participants), both very low-certainty evidence. They may increase PGIC ratings of 'much' or 'very much' improved (RD 0.07, 95% CI 0.02 to 0.11; 7 studies, 1145 participants), pain relief of at least 30% (RD 0.07, 95% CI 0.02 to 0.12; 10 studies, 1285 participants), and withdrawals due to adverse events (RD 0.05, 95% CI 0.02 to 0.09; 11 studies, 1449 participants), all with low-certainty evidence, though these effects were not clinically relevant. CBD-dominant medicines versus placebo. There is no clear evidence for an effect on pain relief of at least 50% (RD -0.08, 95% CI -0.20 to 0.05; 5 studies, 208 participants; very low-certainty evidence). They may increase or decrease PGIC ratings of 'much' or 'very much' improved (RD -0.03, 95% CI -0.22 to 0.16; 2 studies, 79 participants), withdrawals due to adverse events (RD 0.02, 95% CI -0.03 to 0.06; 5 studies, 213 participants), serious adverse events (RD 0.02, 95% CI -0.03 to 0.06; 5 studies, 213 participants), pain relief of at least 30% (RD -0.04, 95% CI -0.17 to 0.09; 5 studies, 218 participants), nervous system-related adverse events (RD -0.03, 95% CI -0.10 to 0.03; 5 studies, 208 participants), and psychiatric disorder-related adverse events (RD -0.01, 95% CI -0.06 to 0.04; 5 studies, 208 participants), all with low-certainty evidence. AUTHORS' CONCLUSIONS:There is no clear evidence for an effect of THC-dominant medicines on pain relief of 50% or greater, PGIC ratings of 'much' or 'very much' improved, withdrawals due to adverse events, and serious adverse events (very low-certainty evidence). There is no clear evidence for an effect of THC/CBD-balanced medicines on pain relief of 50% or greater and serious adverse events (very low-certainty evidence). They may increase PGIC ratings of 'much' or 'very much' improved, and withdrawals due to adverse events (low-certainty evidence). There is no clear evidence for an effect of CBD-dominant medicines on pain relief of 50% or greater (very low-certainty evidence). They may increase or decrease PGIC ratings of 'much' or 'very much' improved, serious adverse events, and withdrawals due to adverse events (low-certainty evidence). FUNDING:No funding. REGISTRATION:DOI 2018 review: 10.1002/14651858.CD012182.pub2.
BackgroundHospice care models vary worldwide due to differences in healthcare systems, cultural attitudes, and resource availability. In Germany, inpatient hospice care plays a vital role in the treatment of critically ill patients, providing inpatient end-of-life care if home care is not possible. The transition between different care settings is a critical interface. This study analyzes aggregated 2023 hospital data to assess the frequency and characteristics of direct transfers from hospitals to inpatient hospices and evaluates the impact of regional infrastructure on these transitions.MethodsWe conducted a cross-sectional analysis of aggregated data from all German hospital stays in 2023, using nationwide hospital billing data reported under §21 of the Hospital Remuneration Act. The study included adult cases and employed linear regression to examine the association between regional bed density and transfer rates.ResultsIn 2023, 15,656 cases resulted in a transfer to an inpatient hospice. This transfer rate varied by region, with the highest rates in Saarland and Brandenburg (0.2% and 0.19%, respectively) and the lowest in Bavaria (0.05%). Hospital to hospice transfers accounted for 32.7% of all hospice admissions. Over 75% of hospice transfers were aged 65 or older. Female patients comprised 53.6% of the hospice transfer cohort, reflecting a significant disparity likely linked to limited informal spousal support. Oncological diseases were the primary diagnosis in 68.8% of cases. Transfer rates correlated strongly with regional hospice bed density (R2 = 0.65) but showed no association with outpatient palliative care density or socioeconomic indicators.ConclusionsHospital-to-hospice transfers in Germany follow a supply-driven logic where regional capacity outweighs clinical demand. These transitions primarily involve elderly patients and women vulnerable to the collapse of informal support networks. As healthcare policy seeks to integrate inpatient and outpatient sectors, these findings serve as a benchmark for transitioning toward a needs-oriented planning model to ensure equitable end-of-life access.
Due to the COVID-19 pandemic, various infection control measures were introduced that had a profound effect on caregiving dynamics and created burdens in the daily lives of informal caregivers (ICs). A scoping review was conducted to identify burden and support factors for ICs during and beyond the pandemic. Studies were included when they examined ICs’ care work during the official time period of the COVID-19 pandemic (March 2020–May 2023) and care hours worked per day or week were specified. Only studies with adult participants and studies in German or English language were incorporated. The scoping review considered quantitative cross-sectional and longitudinal studies involving randomized/quasi-randomized controlled trials, cohort studies, case studies, mixed-methods, and qualitative studies as well as reviews and meta-analyses. The electronic databases PubMed, the Cochrane COVID-19 Study Register, and EBSCO Host were systematically searched. The search was limited to articles published between 2020 and 2024. The scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews. Overall, 42 studies with 51,183individuals met the inclusion criteria and were included in the scoping review. Main findings suggested that the pandemic-related measures caused additional care burden for ICs and worsened the already poor situation of informal care. In particular, the lack of support from health services and the increase in care hours were described as burdensome. Additionally, studies indicated an increase in rates of depression and overall poor mental health, particularly affecting female ICs. Social and formal care support were mentioned as main support factors. Consequently, preparation of future crises should focus on formal health services and structures to promote social support and mental health of ICs during pandemics.
The purpose of this study is to describe and discuss the development of a high-fidelity prototype that aims to support people with dementia (PwD) in dealing and mitigating non-cognitive symptoms associated with their disease, like anxiety, depression or pain. The prototype comprises interactive mockups to enable a co-creation session and subsequent usability testing with healthcare professionals of PwD. Its innovative contribution lies in combining multiple evidence-based interventions (reminiscence therapy, music therapy, journaling, VR mindfulness) with an AI-powered conversational agent within a unified, co-designed interface specifically adapted for dementia care. The prototype was designed with input from existing evidence and guidelines on dementia as well as from expertise from healthcare professionals treating PwD during a first co-creation workshop with those professionals where valuable feedback will be integrated for the next iteration. Key findings include specific design requirements for AI safety in dementia care, privacy protection strategies, and a validated methodology for iterative co-design that bridges professional expertise with end-user needs. Researchers can now adapt for specific needs and challenges that can come up in the next co-creation sessions, with materials and contents that were thoroughly revised and tested, potentially more adequate for successful interactions with PwD. Future steps include a second co-creation session with PwD and informal caregivers to collect perceptions, preferences, needs and concerns regarding the prototype.
OBJECTIVES:Euthanasia for people with dementia is controversial and clinicians should decide how to respond to euthanasia requests. The authors aimed to investigate clinicians' perspectives on the acceptability of euthanasia for people with dementia, and differences between countries and personal characteristics potentially associated with acceptability. DESIGN, SETTING, PARTICIPANTS, MEASUREMENTS:Cross-sectional vignette study as part of the CONT-END studies, in which the authors conducted interviews with clinicians from the Netherlands, Switzerland, Germany, USA, Japan, and Israel online or in-person, and logistic regression analyses to assess associations with acceptability. RESULTS:Participants included 202 physicians and three nurse specialists who assumed similar medical responsibilities. Acceptability was higher in the Netherlands (66%) than in other countries (23%-44%, OR 0.16-0.41, p = 0.003-0.03). Dutch clinicians were more often willing to perform euthanasia upon request of a person with dementia (58%) than clinicians in other countries (18%-34%, OR 0.16-0.17, p = 0.007-0.03), except for Israel (40%, OR 0.48, p = 0.07). Two coping styles, planning (OR 0.77, 95% CI [0.59, 1.00]) and religious coping (OR 0.71, 95% CI [0.60, 0.84]), were associated with lower acceptability of euthanasia. Being religious (OR 0.47, 95% CI [0.24, 0.93]), training in palliative care (OR 0.48, 95% CI [0.26, 0.91]), and using emotional social support as coping style (OR 0.77, 95% CI [0.62, 0.95]) were associated with lower willingness to perform euthanasia upon request of a person with dementia. CONCLUSIONS:Clinicians' perspectives on the acceptability of euthanasia for people with dementia varied across countries and individuals, with diversity related to coping styles, training in palliative care, and religion.
BACKGROUND:In 2018, the Lancet Commission on Global Access to Palliative Care and Pain Relief introduced the concept of serious health-related suffering (SHS) to quantify the need for palliative care and proposed an essential package of palliative care and pain relief (PCPR) to address it. However, this package did not account for complex and specialized needs, and its global implementation has been limited. OBJECTIVES:We conducted a multistage, modified Delphi study to update and expand the initial Essential Package for children and adults METHODS: Two international panels -adult and pediatric- representing diverse geographical regions and income levels participated in two Delphi rounds. External validation was conducted by global experts in palliative care. RESULTS:Retention rates for the Delphi rounds were 79.5% for adults and 64.0% for children. Consensus was achieved on the updated Essential Packages for both adults and children, with minor modifications. Expanded Packages were developed, including additional medications, equipment, and human resources to address broader needs. The study also revealed persistent inequities in medicine availability, particularly in low- and middle-income countries, and limited awareness of the Lancet Commission's Essential Package among health professionals. CONCLUSION:These globally validated Essential and Expanded Packages for adults and children offer a practical adaptable framework to guide national health strategies, strengthen palliative care services, and reduce SHS. Their adoption can meaningfully contribute to achieving Universal Health Coverage.
BACKGROUND:An increasing number of patients in the palliative phase of their disease are cared for at home by palliative home care services. A sense of security, normality of everyday life and symptom control are found to be active factors of quality of care in Specialized Palliative Home Care. Whether this also applies to General Palliative Home Care has not yet been systematically investigated. The aim of this study was to identify distinctions between General and Specialized Palliative Home Care from a healthcare professional's perspective concerning those factors. METHODS:With a qualitative approach, we conducted 11 semi-structured interviews with healthcare professionals from different professional backgrounds in General and/or Specialized Palliative Home Care. RESULTS:In both General and Specialized Palliative Home Care, healthcare-professionals (HCP) found a sense of security (through availability) to be most relevant for the patients. The majority saw aspects of normality of everyday life as a key component for high-quality palliative home care, especially having time for the patient and the family caregiver(s). However, statements about symptom control are mainly related to Specialized Palliative Home Care. The subcodes availability, having time and competence, symptom burden and financial resources were the main distinguishing factors between General and Specialized Palliative Home Care in sense of security, normality of everyday life and symptom control, respectively. CONCLUSIONS:Our results provide the basis for a clearer definition of GPHC and SPHC and contribute to identifying factors for a transferal between the two services to provide best care for the patient. Distinguishing (sub)factors revealed challenges and short-term solutions. Providing (financial) incentives to guarantee time and availability in General Palliative Home Care would lead to more effective care.