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Journal of Palliative Medicine Dec 2023The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with...
The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Topics: Child; Humans; Palliative Care; Quality of Life; Community Health Services; Hospice Care; Pain
PubMed: 37972058
DOI: 10.1089/jpm.2023.0147 -
The American Journal of Hospice &... Aug 2023To describe the use of tele-palliative care in patients with advanced disease and assess its effectiveness on quality of life (QOL), symptom burden and other outcomes...
To describe the use of tele-palliative care in patients with advanced disease and assess its effectiveness on quality of life (QOL), symptom burden and other outcomes for patients and their caregivers. We searched for randomised controlled trials to assess the outcomes of tele-palliative care on patients with advanced disease and their caregivers. Eight databases were searched for studies published in Chinese or English from inception to November 27, 2021. Data from the included trials were extracted independently by 2 reviewers and evaluated independently for methodological quality using the Cochrane Collaboration's tool. A narrative synthesis of the results of all trials was performed. Thirty trials were included ultimately with more than one half of the studies were moderate to high quality, including, which involved 19 665 patients and 1153 caregivers. Results from 10/15 included trials (reporting patient QOL), 5/14 trials (reporting patient symptoms), 1/3 trials (reporting survival), 8/13 trials (reporting patient mood), 3/6 trials (reporting ACP related indicators), 3/7 trials (reporting resource utilization) showed statistically significant between tele-palliative care and control care groups. Of 30 trials, 8 measured caregiver outcomes, 1/4 trials (reporting caregiver QOL) showed statistically significant, and results from 3/3 trials (reporting caregiver mood), 3/4 trials (reporting caregiver burden) showed benefit in at least 1 domain at 1 or more time points. This systematic review suggests that although tele-palliative care can improve patient physical, patient and caregiver psychological health outcomes to some extent, there is still a lack of sufficient evidence to substantiate its application effects. Moreever, regional and cultural characteristics should also be taken into account when tele-palliative care interventions are carried out.
Topics: Humans; Caregivers; Palliative Care; Quality of Life; Hospice and Palliative Care Nursing
PubMed: 36113129
DOI: 10.1177/10499091221123566 -
The American Journal of Hospice &... Nov 2023To demonstrate the trends and variety of research on palliative care during the COVID-19 pandemic. A systematic search of the Web of Science database. Since the outbroke... (Review)
Review
To demonstrate the trends and variety of research on palliative care during the COVID-19 pandemic. A systematic search of the Web of Science database. Since the outbroke of the COVID-19 pandemic, the adjustment of palliative care systems is warranted to maintain a high quality of care. The COVID-19 -related palliative care studies account for approximately 4% of all publications on palliative care. However, there is a dearth of research investigating the nature of these studies. A total of 293 studies were included. Of the included studies, those related to system improvement were the most common (181/293, 61.8%), followed by those related to patient care (79/293, 27.0%), bereavement support for patients or family members (19/293, 6.5%), and the mental health of frontline practitioners (14/293, 4.8%). From these studies, 82, 137, and 74 studies were published in 2020, 2021, and 2022 (until August 1), respectively. The research trends of palliative care demonstrate the flexibility and rapid response of the global palliative care system to the COVID-19 pandemic and show how the palliative care system is evolving. While most studies are interested in system improvement, patient care, and bereavement support, the mental health of frontline practitioners has received less attention. Our findings provide palliative care practitioners with current valuable information and highlight possible future trends.
Topics: Humans; COVID-19; Hospice and Palliative Care Nursing; Palliative Care; Pandemics; Terminal Care
PubMed: 36503251
DOI: 10.1177/10499091221145202 -
Journal of Palliative Medicine Jan 2024Neuroinflammatory diseases are progressive leading to loss of function and disability. Although palliative care (PC) utilization has increased globally, it has scarcely...
Neuroinflammatory diseases are progressive leading to loss of function and disability. Although palliative care (PC) utilization has increased globally, it has scarcely increased in neurology. To explore PC attitudes and knowledge among patients with neuroinflammatory diseases, such as multiple sclerosis, neuromyelitis optica spectrum disorder, and myelin oligodendrocyte glycoprotein antibody-associated disease. A cross-sectional 1-year study was conducted using the Palliative Care Knowledge Scale (PaCKS) and the PC Health Information National Trends Survey (HINTS). Murray's transition theory guided this study, which integrates palliative services including decision making, communication, and coordinated care. The majority of study patients were female (69%) ( = 86) and White (79%). Forty-two percent indicated that they had never heard about PC, 46% said that they knew a little bit about PC, and 12% said that they knew a lot about PC. Fifty percent of patients knew the goals of PC and had knowledge about PC services. Forty-four percent to 60% agreed that PC goals include helping friends and family to cope with a patient's illness, offering social and emotional support, and managing pain and other symptoms. Patients who self-reported being familiar with PC performed significantly better on the PaCKS than those unfamiliar with PC ( < 0.001), and those who self-reported moderate or severe memory loss performed significantly worse on the PaCKS than those with mild memory loss ( = 0.027). There was an association between higher education and PC knowledge and between patients' PaCKS scores and their self-reported HINTS PC knowledge. Patients have partial PC knowledge. Patients require education about PC early in their disease along their illness trajectory.
Topics: Humans; Male; Female; Palliative Care; Cross-Sectional Studies; Neuroinflammatory Diseases; Hospice and Palliative Care Nursing; Surveys and Questionnaires; Health Knowledge, Attitudes, Practice; Memory Disorders
PubMed: 37610856
DOI: 10.1089/jpm.2023.0224 -
AACN Advanced Critical Care Jun 2024The purposes of this review are to describe differences between palliative care for adult patients and palliative care for pediatric patients, both generally and in the... (Review)
Review
The purposes of this review are to describe differences between palliative care for adult patients and palliative care for pediatric patients, both generally and in the intensive care unit; to highlight ethical considerations for pediatric intensive care unit patients by using illustrative cases; and to examine the impact of these ethical considerations on decision-making for children and their families.
Topics: Humans; Intensive Care Units, Pediatric; Palliative Care; Child; Male; Female; Adolescent; Child, Preschool; Infant; Adult; Decision Making; Infant, Newborn
PubMed: 38848559
DOI: 10.4037/aacnacc2024104 -
JCO Global Oncology Aug 2023Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding...
PURPOSE
Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.
METHODS
The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS
A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).
CONCLUSION
Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.
Topics: Humans; Child; Palliative Care; Quality of Life; Brazil; Neoplasms; Physicians
PubMed: 37535886
DOI: 10.1200/GO.23.00057 -
Journal of Vascular Surgery Aug 2023
Topics: Humans; Palliative Care; Communication
PubMed: 37481277
DOI: 10.1016/j.jvs.2023.03.032 -
Journal of Pain & Palliative Care... Sep 2023Methadone is an effective analgesic with unique pharmacokinetic and pharmacodynamic variables. There is no national consensus on methadone equianalgesia tools. Our study...
Methadone is an effective analgesic with unique pharmacokinetic and pharmacodynamic variables. There is no national consensus on methadone equianalgesia tools. Our study aimed to compare methadone equianalgesic tools from various national institutions with the primary objective to summarize current practice and secondary objective to determine if a national consensus can be established. Out of 25 institutional methadone equianalgesic tools reviewed, 18 contained sufficient data and were included in this study. Fifteen (15) of the institution evaluated tools utilized a wide variety of dose-dependent modalities for methadone conversion with the hospice and palliative care (HAPC) Consensus method being the most common. Based on the variability of the equianalgesia tools evaluated in this study, we were unable to recommend a consensus methadone conversion method. Further trials exploring methadone equianalgesia beyond our study are needed.
Topics: Humans; Methadone; Analgesics, Opioid; Pain; Dose-Response Relationship, Drug; Palliative Care
PubMed: 37010231
DOI: 10.1080/15360288.2023.2194873 -
American Society of Clinical Oncology... Jun 2024Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including... (Review)
Review
Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including improved quality of life, reduced physical and psychological symptom burden, enhanced prognostic awareness, and reduced health care utilization at the end of life. Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. More research is needed to identify mechanisms to distribute palliative care optimally and equitably. Simultaneously, the transformation of the oncology treatment landscape has led to shifts in the supportive care needs of patients and caregivers, who may experience longer, uncertain trajectories of cancer. Now, palliative care also plays a clear role in the care of patients with hematologic malignancies and may be beneficial for patients undergoing phase I clinical trials and their caregivers. Further research and clinical guidance regarding how to balance the risks and benefits of opioid therapy and safely manage cancer-related pain across this wide range of settings are urgently needed. The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.
Topics: Humans; Palliative Care; Neoplasms; Precision Medicine; Quality of Life
PubMed: 38815187
DOI: 10.1200/EDBK_100038 -
Nederlands Tijdschrift Voor Geneeskunde Nov 2023Palliative care: •is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness or...
Palliative care: •is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness or frailty; •is not restricted to terminal care; •is started early in the trajectory of all life-threatening illnesses (oncological and non-oncological); •requires specific knowledge, communication skills and attitude, and an interdisciplinary approach; •requires a systematic approach for complaints and problems in all domains; •addresses all domains: physical, psychological, social and spiritual; •looks for a balance between disease-oriented and symptom-oriented treatment; •includes advance care planning and a careful exploration of a death wish. In this paper all these aspects are explored. Sources of information and possibilities for advice in complex situations are provided.
Topics: Humans; Palliative Care; Quality of Life; Terminal Care; Advance Care Planning; Frailty
PubMed: 37994722
DOI: No ID Found