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PURPOSE: While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not as widely known. This study aims to determine the effects of EPC integration on patients with newly diagnosed symptomatic MM and the feasibility of this approach. METHODS: This prospective cohort study enrolled patients within eight weeks of diagnosis. Participants met with a palliative care team monthly for 12 months. Functional Assessment of Cancer Therapy-General (FACT-G) plus Multiple Myeloma Subscale (FACT-MM), and Hospital Anxiety and Depression Scale (HADS) were administered upon enrollment and every three months. Proportion of completed visits and assessments determined the feasibility of EPC. RESULTS: Of the twenty participants enrolled from January 2020 to November 2022, median age was 65 (range 40, 77), 15 (75%) were female, 15 (75%) were white, 65% completed assessments at six months, and 60% at 12 months. The following measures significantly improved at 12 months versus baseline: FACT-G scores increased by 15.1 points (adjusted 95% CI: 2.2-28.1, adjusted p = 0.02); Functional Well-Being scores increased by 6.0 points (adjusted 95% CI: 1.1-10.9, adjusted p = 0.01); and Pain Subscale scores increased by 3.4 points (adjusted 95% CI: 0.5-6.4, adjusted p = 0.02). Depression and anxiety scores did not significantly change over time. CONCLUSION: Functional well-being, pain experience and overall QOL improved in a cohort of patients with newly diagnosed MM after 12 months of EPC involvement. Although monthly visits seemed feasible, the findings suggest that further research is needed to explore the optimal timing of palliative care interventions in the MM trajectory. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04248244 (Registration Date: January 30, 2020).
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Mieloma Múltiplo , Cuidados Paliativos , Humanos , Mieloma Múltiplo/terapia , Mieloma Múltiplo/psicologia , Feminino , Masculino , Cuidados Paliativos/métodos , Pessoa de Meia-Idade , Idoso , Estudos Prospectivos , Adulto , Qualidade de Vida , Estudos de Coortes , Depressão/etiologia , Ansiedade/etiologiaRESUMO
CONTEXT: Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. OBJECTIVES: This study developed quality indicators for the integration of oncology and home palliative care in Japan. METHODS: We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. RESULTS: Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. CONCLUSION: Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.
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Técnica Delphi , Serviços de Assistência Domiciliar , Neoplasias , Cuidados Paliativos , Indicadores de Qualidade em Assistência à Saúde , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/organização & administração , Cuidados Paliativos/métodos , Serviços de Assistência Domiciliar/normas , Serviços de Assistência Domiciliar/organização & administração , Japão , Neoplasias/terapia , Oncologia/organização & administração , Oncologia/normasRESUMO
PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.
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Motivação , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , Cuidados Paliativos/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , França , Neoplasias/psicologia , Neoplasias/terapia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso de 80 Anos ou mais , Adulto , Recusa do Paciente ao Tratamento/psicologia , Ensaios Clínicos como Assunto/psicologia , Qualidade de Vida , Método Duplo-Cego , Pesquisa QualitativaRESUMO
OBJECTIVES: To investigate the impact of early vs. late palliative care (PC) on the frequency of admissions to acute hospital settings and the utilization of end-of-life (EoL) interventions in cancer decedents. METHODS: In this single-center, cross-sectional study, we examined the frequency of intensive care unit (ICU) and emergency department (ED) admissions among adult cancer decedents between 2018 and 2022 in a referral hospital in México. Additionally, we assessed EoL medical interventions, categorizing patients into 3 groups: those who received early PC (EPC), late PC (LPC), and those who did not receive PC (NPC). RESULTS: We analyzed data from 1762 patients, averaging 56 ± 16.3 years old, with a predominant representation of women (56.8%). PC was administered to 45.2% of patients, but EPC was limited to only 12.3%. The median time from the initiation of PC to death was 5 days (interquartile range: 2.0-31.5). Hematological malignancies were the most prevalent, affecting 21.5% of patients. EPC recipients demonstrated notable reductions in ICU and ED admissions, as well as diminished utilization of chemotherapy, radiotherapy (RT), antibiotics, blood transfusions, and surgery when compared to both LPC and NPC groups. EPC also exhibited fewer medical interventions in the last 14 days of life, except for RT. SIGNIFICANCE OF RESULTS: The findings of this study indicate that a significant proportion of EoL cancer patients receive PC; however, few receive EPC, emphasizing the need to improve accessibility to these services. Moreover, the results underscore the importance of thoughtful deliberation regarding the application of EoL medical interventions in cancer patients.
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BACKGROUND: Oncologists are often concerned that talking about death with patients may hinder their relationship. However, the views of death held by patients have not been thoroughly investigated. This study aimed to describe the perception of death among patients with advanced cancer receiving early palliative care (EPC) and their caregivers. MATERIAL AND METHODS: Qualitative and quantitative analyses were performed on 2 databases: (a) transcripts of open-ended questionnaires administered to 130 cancer patients receiving EPC with a mean age of 68.4 years and to 115 primary caregivers of patients on EPC with a mean age of 56.8; (b) texts collected from an Italian forum, containing instances of web-mediated interactions between patients and their caregivers. RESULTS: Quantitative analysis shows that: (a) patients and caregivers are not afraid of speaking about death; (b) patients and caregivers on EPC use the word "death" significantly more than patients on standard oncology care (SOC) and their caregivers (Pâ <â .0001). For both participants on EPC and SOC, the adjectives and verbs associated with the word "death" have positive connotations; however, these associations are significantly more frequent for participants on EPC (verbs, Psâ <â .0001; adjectives, Psâ <â .003). Qualitative analysis reveals that these positive connotations refer to an actual, positive experience of the end of life in the EPC group and a wish or a negated event in the SOC group. CONCLUSIONS: EPC interventions, along with proper physician-patient communication, may be associated with an increased acceptance of death in patients with advanced cancer and their caregivers.
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Atitude Frente a Morte , Neoplasias , Pacientes , Idoso , Humanos , Pessoa de Meia-Idade , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Neoplasias/patologia , Neoplasias/terapia , Cuidados Paliativos , Pacientes/psicologia , Pacientes/estatística & dados numéricos , Relações Médico-PacienteRESUMO
BACKGROUND: As earlier studies found that early onset specialized palliative care (ESPC) results in better quality of life (QoL), less hospitalization and chemotherapy toward end-of life, we implemented ESPC in our oncology outpatient clinic. The aim of this study was to describe reasons for referral, interventions performed and the satisfaction among the oncologic staff. MATERIAL AND METHODS: The outpatient ESPC clinic was established in the department of oncology. Prespecified selected data was obtained from the patients records. All patients were asked to fill in a questionnaire concerning their symptoms and QOL. A survey among the oncologic personnel concerning their perception of the clinic was conducted. All data were consecutively collected in a share point database. RESULTS: We included 134 patients. The primary referral symptoms were pain (69%) or psychological/existential challenges (23%). 55% of patients filled in an EORTC questionnaire and rated a median (QoL) of 3.4. Interventions initiated were on based on the following symptoms: pain (70%), constipation (53%), nausea (15%), dyspnea (10%) and depression (7%). Median waiting time was 13 days. Of the 134 patients referred to the ESPC clinic 101 was admitted. Symptoms and problems were resolved in the ESPC clinic for 81 of the 101 admitted patients (80%), i.e., after one consultation for 25 patients and after a follow up course in the clinic for 56 patients. A survey among the staff at the Department of Oncology demonstrated a high degree of satisfaction with the ESPC clinic. CONCLUSIONS: We report experiences from implementation of ESPC in our outpatient oncologic clinic, where 81 (80%) of the admitted patients could be finished after one or a few follow up contacts, as their symptoms had been resolved. There was a high degree of satisfaction with the clinic among the oncologic staff.
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Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Instituições de Assistência Ambulatorial , Dor , Oncologia , Neoplasias/terapiaRESUMO
PURPOSE: Pancreatic cancer is a lethal disease. Many patients experience a heavy burden of cancer-associated symptoms and poor quality of life (QOL). Early palliative care alongside standard oncologic care results in improved QOL and survival in some cancer types. The benefit in advanced pancreatic cancer (APC) is not fully quantified. METHODS: In this prospective case-crossover study, patients ≥ 18 years old with APC were recruited from ambulatory clinics at a tertiary cancer center. Patients underwent a palliative care consultation within 2 weeks of registration, with follow up visits every 2 weeks for the first month, then every 4 weeks until week 16, then as needed. The primary outcome was change in QOL between baseline (BL) and week 16, measured by Functional Assessment of Cancer Therapy - hepatobiliary (FACT-Hep). Secondary outcomes included symptom control (ESAS-r), depression, and anxiety (HADS, PHQ-9) at week 16. RESULTS: Of 40 patients, 25 (63%) were male, 28 (70%) had metastatic disease, 31 (78%) had ECOG performance status 0-1, 31 (78%) received chemotherapy. Median age was 70. Mean FACT-hep score at BL was 118.8, compared to 125.7 at week 16 (mean change 6.89, [95%CI (-1.69-15.6); p = 0.11]). On multivariable analysis, metastatic disease (mean change 15.3 [95%CI (5.3-25.2); p = 0.004]) and age < 70 (mean change 12.9 [95%CI (0.5-25.4); p = 0.04]) were associated with improved QOL. Patients with metastatic disease had significant improvement in symptom burden (mean change -7.4 [95%CI (-13.4 to -1.4); p = 0.02]). There was no difference in depression or anxiety from BL to week 16. CONCLUSION: Palliative care should be integrated early in the journey for patients with APC, as it can improve QOL and symptom burden. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT03837132.
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Neoplasias , Neoplasias Pancreáticas , Adolescente , Idoso , Feminino , Humanos , Masculino , Estudos Cross-Over , Cuidados Paliativos/métodos , Neoplasias Pancreáticas/terapia , Pacientes , Qualidade de Vida , Neoplasias PancreáticasRESUMO
BACKGROUND: Majority of residents in long-term care facilities (LTCF) have limited and delayed access to palliative care even though many suffer from incurable chronic illnesses that will likely require the provision of palliative care. We present the study protocol of "PADI-Palli", an intervention aims to advance early integrated palliative care into standard care delivered in LTCF. This study will assess the effectiveness of early integrated palliative care on palliative care accessibility for older persons in LTCF, and identify the key factors for the successful implementation of early integrated palliative care and its sustainability in the LTCF context. METHODS: This multicentre interventional study utilises a pragmatic research design with a convergent parallel mixed-methods approach. The qualitative study will use a case study design and the quantitative study will use a stepped wedge cluster randomised trial. In total, 21 participating LTCF from three French regions will be randomly allocated to one of seven clusters. The clusters will cross over from the usual care to the active intervention condition over the course of the study. The primary outcome relates to the accurate identification of palliative care needs and early access to palliative care for LTCF residents. Secondary outcomes are quality of care, quality of life for residents and their families, and quality of life at work for professionals. Measurements will be performed before and after the intervention. Implementation and evaluation of PADI-Palli intervention is grounded in the Consolidated Framework for Implementation Research. DISCUSSION: Existing evidence demonstrates that early integrated palliative care in cancer care leads to a significant improvement in patient outcomes and processes of care. Little is known, however, about early integrated palliative care in the context of LTCF for older persons. This study has the potential to fill this gap in the literature by providing evidence on the effectiveness of early integrated palliative care for older persons in LTCF. Moreover, this study will provide a better understanding of the relevant contextual elements that facilitate or hinder early integrated palliative care implementation and transferability. If proven effective, this intervention can be scaled to other care settings in which older persons require palliative care. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT04708002; National registration: ID-RCB number: 2020-A01832-37.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Idoso , Idoso de 80 Anos ou mais , Cuidados Paliativos/métodos , Qualidade de Vida , Assistência de Longa Duração , Instituições de Cuidados Especializados de Enfermagem , Estudos Multicêntricos como Assunto , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
AIM AND OBJECTIVES: To present our experience of a nursing telephone consultation service, describing patient and caregiver requests, and outlining ensuing nursing or medical interventions. BACKGROUND: Recently, there has been an increase in the use of telephone consultation for cancer patients. However, there is still limited data on the characteristics of this type of service and on the nature of the interventions carried out. DESIGN AND METHODS: In this observational retrospective study, we evaluated the phone calls made over a 6-month period by patients or caregivers to the early palliative care team of a cancer institute. Information regarding telephone calls (frequency, reason and management) was systematically collected by a nursing case manager. The study complies with the STROBE checklist File S1. RESULTS: 171 patients used the service, for a total of 323 phone calls. The majority (80.8%) were from patients followed at the outpatient clinic and the most common requests were for pain management (38.4%) and for updates on the clinical situation (23.8%). Other frequent requests were for medication management (18.9%) and scheduling (18.3%). 210 of the 323 phone calls were handled by the nurse, while 22 were managed in collaboration with a physician. An 87.6% effectiveness in telephone management was observed. CONCLUSION: The overall use of the phone service was higher for early palliative care patients. The majority of phone calls were effectively handled by the nursing case manager. RELEVANCE TO CLINICAL PRACTICE: An effective and feasible nurse-led telephone follow-up of early palliative care patients with advanced cancer could improve their care experience. Specifically, it could impact on patients and families improving quality of life and symptom control securing access to timely care without travel or additional cost.It can also improve continuity of care, adherence to oncological treatments and minimise acute care visits.
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Neoplasias , Cuidados Paliativos , Humanos , Encaminhamento e Consulta , Papel do Profissional de Enfermagem , Qualidade de Vida , Estudos Retrospectivos , Seguimentos , Telefone , Neoplasias/terapiaRESUMO
BACKGROUND: Maintaining caregivers' quality of life (QoL) is critical to sustaining the care needed for cancer patients. One of the interventions applied to cancer patients' caregivers is early palliative care (EPC). AIMS: This systematic review synthesized the implementation of EPC on the QoL of caregivers of cancer patients. METHODS: The search was undertaken using seven electronic databases: Medline, Embase, CINAHL, CENTRAL, Web of Science, Scopus, and ProQuest Dissertation & Theses (PQDT). The search strategy integrated relevant terms of early palliative care, caregivers, cancer, and quality of life and was conducted until March 14, 2022. The thematic data analysis approach was used to integrate the results. RESULTS: Using advanced search features, 4193 studies were obtained on the initial search. After screening and quality assessment, eight studies were included. Eight studies depicted that EPC interventions were delivered for caregivers of patients with advanced cancer, that is, those with a life expectancy of at least 4-24 months or considered intermediate to poor prognosis. One study provided the intervention for caregivers of patients newly diagnosed with cancer. None of the studies had the same protocol or content in delivering EPC for caregivers. Four studies gave similar details on addressing the strategies for caregivers in several aspects, including physical, psychological, social, and spiritual. There was no difference in the QoL between caregivers with cancer patients who received EPC compared with usual care. EPC was noted to influence other factors, such as caregivers' psychological distress and burden. LINKING EVIDENCE TO ACTION: The data on EPC interventions portray no beneficial effects on the QoL of caregivers with cancer patients. Further studies on developing standard protocols of EPC, multidisciplinary team, and how early it should be given to caregivers are strongly recommended.
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Neoplasias , Qualidade de Vida , Humanos , Cuidados Paliativos/métodos , Cuidadores/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Estresse PsicológicoRESUMO
Palliative care is often started late in patients with life-threatening conditions, particularly in patients with advanced cancer. However, with the emergence of the early palliative care (EPC) paradigm, their quality of life (QoL) may be better. Although several previous meta-analyses support the effectiveness of EPC in increasing QoL, essential issues related to the optimisation of EPC interventions are still needed. A systematic review and meta-analysis of randomised controlled trials (RCTs) were conducted to determine the effectiveness of EPC on the QoL of patients with advanced cancer. PubMed, ProQuest, MEDLINE through EBSCOhost and Cochrane Library and clinicaltrials.gov (register website) were searched for RCTs published before May 2022. Data synthesis used the Review Manager 5.4 to generate pooled estimates of effect size. A total of 12 empirical trials met the eligibility criteria and were included in this study. The results showed that EPC intervention had a significant effect (standard mean difference = 0.16, 95% confidence interval: 0.04, 0.28, Z = 2.68, P < 0.05). However, the secondary outcomes showed including mood (mean difference = -0.90, 95% CI: -2.32, 0.51, P > 0.05) and symptom controls (MD = -1.49, 95% CI: -3.81, 0.81, P > 0.05) had no significant effect. EPC is effective in improving the QoL of patients with advanced cancer. However, other outcomes still need to be reviewed, because the review of QoL is not enough to generalise the benchmarks for the effectiveness and optimisation of EPC interventions. Another notable aspect is to consider the most effective and efficient duration for starting and ending EPC interventions.
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BACKGROUND: Oncologists' fear of taking away hope from patients when proposing early palliative care (EPC) is a barrier to the implementation of this model. This study explores hope perceptions among bereaved caregivers of onco-hematologic patients who received EPC. MATERIALS AND METHODS: Open-ended questionnaires were administered to 36 primary caregivers of patients who received EPC (26 solid and 10 hematologic cancer patients; mean age: 51.4 years, range age: 20-74), at 2 cancer centers, 2 months to 3 years after a patient death. Definitions of hope in the caregivers' narratives were analyzed through a directed approach to content analysis. Results were complemented with automated lexicographic analysis. RESULTS: Caregivers perceived hope mainly as resilience and as expectations based on what they were told about the patients' clinical conditions. Their hope was bolstered by trusting relationships with the healthcare teams. EPC interventions were recalled as the major support for hope, both during the illness and after the death of the patient. The automated quantitative lexical analysis provided deeper insights into the links between hope, truth, and trust. CONCLUSIONS: Our findings suggest that telling the truth about an incurable onco-hematologic disease and beginning EPC might be the combination of factors triggering hope in the setting of incurable cancer.
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Luto , Neoplasias , Oncologistas , Adulto , Idoso , Cuidadores , Humanos , Pessoa de Meia-Idade , Cuidados Paliativos , Adulto JovemRESUMO
PURPOSE: The most appropriate criteria and timing for palliative care referral remain a critical issue, especially in patients with metastatic breast cancer for whom long-term chemosensibility and survival are observed. We aimed to compare the impact of early palliative care including formal concertation with oncologists on decision for an additional line of chemotherapy compared with usual oncology care. METHODS: This randomized prospective study enrolled adult women with metastatic breast cancer and visceral metastases with a 3rd- or 4th-line chemotherapy (CT). Patients received usual oncology care with a palliative care consultation only upon patient or oncologist request (standard group, S) or were referred to systematic palliative care consultation including a regular concertation between palliative care team and oncologists (early palliative care group, EPC). The primary endpoint was the rate of an additional CT (4th or 5th line) decision. Quality of life, symptoms, social support and satisfaction were self-evaluated at 6 and 12 months, at treatment discontinuation or 3 months after discontinuation. RESULTS: From January 2009 to November 2012, two authorized cancer centers included 98 women (EPC: 50; S: 48). Thirty-seven (77.1%, 95%CI 62.7-88%) patients in the EPC group had a subsequent chemotherapy prescribed and 36 (72.0%, 95%CI 57.5-83.8%) in the S group (p = 0.646). No differences in symptom control and global quality of life were observed, but less deterioration in physical functioning was reported in EPC (EPC: 0 [- 53-40]; S: - 6; 7 [- 60 to - 20]; p = 0.027). Information exchange and communication were significant improved in EPC (exchange, EPC: - 8.3 [- 30 to + 7]; S: 0.0 [- 17 to + 23]; p = 0.024; communication, EPC: 12.5 [- 8 to - 37]; S: 0.0 [- 21 to + 17]; p = 0.004). CONCLUSION: EPC in metastatic breast cancer patients did not impact the prescription rate of additional chemotherapy in patients a 3rd- or 4th-line chemotherapy for metastatic breast cancer; however, EPC may contribute to alleviate deterioration in physical functioning, while facilitating communication. TRIAL REGISTRATION: ClinicalTrial.gov identifier: NCT00905281, May 20, 2009.
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Neoplasias da Mama , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Humanos , Feminino , Cuidados Paliativos/métodos , Neoplasias da Mama/tratamento farmacológico , Qualidade de Vida , Estudos ProspectivosRESUMO
INTRODUCTION: New treatments have improved the overall survival of patients with multiple myeloma (MM). At diagnosis and during the course of the disease, patients often report pain and other symptoms. Given the long disease trajectory, psychological and social issues are also frequent. Recently, the potential usefulness of early palliative care (EPC) was hypothesized in the area of hematology. We conducted a retrospective analysis of patients with MM referred to our institute for a palliative care (PC) consultation between January 2017 and June 2020. Our aim was to evaluate the main reasons (pain or other clinical symptoms) for the referral for a first PC consultation. METHODS: We examined the main reasons for the first PC consultation, the number of PC consultations carried out, and the period of time between diagnosis, first and subsequent PC visits, and death. We also recorded information on the type of pain experienced and the treatments administered. RESULTS: Of the 325 patients with MM followed at our hematology unit during the study period, 43 were referred for a PC consultation (39 for pain management and 4 to determine the most appropriate care setting (hospice or palliative homecare service)). Nineteen (44.2%) of the 43 patients reported other symptoms in addition to pain. The median time between MM diagnosis and the first PC consultation was 473 days. Fifteen patients died, with a median 332 days between the first PC visit and death. CONCLUSION: Randomized studies on MM involving larger patient populations with access to EPC are needed to identify an effective clinical model to improve the management of patients with MM.
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Cuidados Paliativos na Terminalidade da Vida , Mieloma Múltiplo , Humanos , Mieloma Múltiplo/diagnóstico , Mieloma Múltiplo/terapia , Cuidados Paliativos , Encaminhamento e Consulta , Estudos RetrospectivosRESUMO
PURPOSE: Access to and close links with home palliative care services are essential to ensure seamless transitions between care settings in anticancer treatment. However, the timing of referrals to home palliative care services is often delayed. We explored barriers to and facilitators of improving the integration of home palliative care and medical oncology experienced by healthcare professionals in Japan. METHODS: This qualitative study involved semi-structured focus groups and individual interviews conducted via a web conferencing system. Participants were 27 healthcare professionals, including oncologists, palliative care physicians, home palliative care physicians, nurses from both cancer hospitals and home visit nursing agencies, and social workers from cancer hospitals. RESULTS: Barriers and facilitators were grouped into three themes: (1) perspectives and ideas on integrating oncology and home palliative care; (2) barriers; and (3) facilitators. Barriers included seven sub-themes: lack of referral criteria for home palliative care services; financial elements related to home palliative care services; patients' lack of understanding of the illness trajectory; collusion in doctor-patient communication about imminent death; frequent visits to cancer hospitals; variations in home palliative care services; and problems in providing treatment and care at home. Facilitators included two sub-themes: relationships between oncologists and home palliative care physicians, and cancer hospital staff experience/knowledge of home palliative care. CONCLUSION: This study identified barriers and facilitators to integrating home palliative care and oncology. Some barriers experienced by professionals were comparable with barriers to early integration of palliative care into oncology.
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Serviços de Assistência Domiciliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Oncologia , Cuidados Paliativos , Pesquisa QualitativaRESUMO
Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients' and families' experiences. We aimed to clarify appropriate SPC referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (n = 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), or none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding "none of these" responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: This meta-analysis aims to compare the effects of early palliative care on patients with incurable cancer with those of standard oncologic care or on-demand palliative care. METHODS: Pubmed, Embase, Web of Science, Cochrane Library, ClinicalTrials.gov and World Health Organization International Clinical Trials Registry Platform (ICTRP) were searched for relevant randomised controlled trials. We also screened reference lists of included studies for additional qualified studies. We used Cochrane Collaboration Risk of Bias Tool to evaluate quality of included studies. DerSimonian and Laird's random effects meta-analysis was used to synthesise the effects. RESULTS: Sixteen in 1376 studies were included. The pooled data suggested that patients receiving early palliative care had better quality of life (SMD = 0.737, 95% CI: 0.240-1.234), fewer symptoms (SMD = 0.304, 95% CI: 0.097-0.510), better mood (SMD = -0.443, 95% CI: -0.605 to -0.282), better survival (hazard ratio [HR] of death: HR = 1.521, 95% CI: 1.521-1.923; 1-year overall survival probability: HR = 1.238, 95% CI: 1.031-1.486) and higher probability of dying at home (HR = 1.153, 95% CI: 1.027-1.295) than patients in the control group. And there is no difference between resource use. CONCLUSION: Early palliative care improves lives of patients with incurable cancer, but the evidence level is low because of high heterogeneity of quality of life and small numbers of included studies for other results.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Qualidade de VidaRESUMO
BACKGROUND: Early identification of patients who require palliative and supportive care at the general palliative care level is challenging. The Supportive & Palliative Care Indicators Tool (SPICT™) might provide a helpful framework for this process. AIM: To translate, culturally adapt and content validate SPICT™-DK in hospital, primary care, and general practice and within the broader Danish health care context. METHODS: SPICT™-DK was translated and cross-culturally validated by using the TRAPD-model (Translation, Review, adjudication, pretesting, and documentation) as well as the EORTC- translation guide (European Organisation for Research and Treatment of Cancer). In the pre-(pilot) testing phase, six focus group interviews and five individual interviews were conducted involving n = 29 health care professionals from general practice, primary care, and hospital. The qualitative data were analyzed through thematic analysis and the SPICT™-DK was then revised and published. RESULTS: The interviews revealed that SPICT™-DK can be used to identify people with palliative care needs. Three themes were derived from the analysis and showed SPICT™-DK provides a linguistic framework but must be used as an interdisciplinary tool as that SPICT™-DK requires competencies and collaboration. CONCLUSION: SPICT™-DK is now translated and culturally validated in a Danish healthcare setting. The tool is useful to identify people with palliative care needs but must be implemented as an interdisciplinary collaborative intervention. SPICT™ -DK cannot be used by all healthcare professionals as it requires disease-specific competencies. However, it provides a common language for early palliative care interventions which can form the basis for interdisciplinary planning of future treatment and care.
Assuntos
Idioma , Cuidados Paliativos , Comparação Transcultural , Atenção à Saúde , Dinamarca , Humanos , Inquéritos e QuestionáriosRESUMO
With the number of cancer diagnoses and cancer-related deaths on the rise, palliative care is becoming a more important consideration for helping to improve the quality of life of patients and families and the support they receive during their healthcare journey. Accordingly, the early integration of palliative care into standard oncology care would appear to be an underutilized and novel approach that could be used to address the specific needs of palliative oncology patients. Oncology nurses play a central role in this process, delivering care throughout the health continuum, including palliative care. The purpose of this rapid review is to outline the benefits of early palliative care interventions and describe their characteristics. A literature search on CINAHL and PubMed returned five randomized trials conducted between 2010 and 2018. An analysis of these papers showed that the majority of the selected studies concluded that the early integration of palliative care into standard oncology care, which includes such treatments as chemotherapy and radiation therapy, can lead to improvements in quality of life, symptoms of anxiety and depression, and overall survival rate.
RESUMO
BACKGROUND: Little is known about the underlying mechanisms through which early palliative care (EPC) improves multiple outcomes in patients with cancer and their caregivers. The aim of this study was to qualitatively and quantitatively analyze patients' and caregivers' thoughts and emotional and cognitive perceptions about the disease prior to and during the EPC intervention, and in the end of life, following the exposure to EPC. MATERIALS AND METHODS: Seventy-seven patients with advanced cancer and 48 caregivers from two cancer centers participated in semistructured interviews. Their reports were qualitatively and quantitatively analyzed by the means of the grounded theory and a text-analysis program. RESULTS: Participants reported their past as overwhelmed by unmanaged symptoms, with detrimental physical and psychosocial consequences. The EPC intervention allowed a prompt resolution of symptoms and of their consequences and empowerment, an appreciation of its multidimensional approach, its focus on the person and its environment, and the need for EPC for oncologic populations. Patients reported that conversations with the EPC team increased their acceptance of end of life and their expectation of a painless future. Quantitative analysis revealed higher use of Negative Affects (p < .001) and Biological Processes words (p < .001) when discussing the past; Agency words when discussing the present (p < .001); Positive Affects (p < .001), Optimism (p = .002), and Insight Thinking words (p < .001) when discussing the present and the future; and Anxiety (p = .002) and Sadness words (p = .003) when discussing the future. CONCLUSION: Overall, participants perceived EPC to be beneficial. Our findings suggest that emotional and cognitive processes centered on communication underlie the benefits experienced by participants on EPC. IMPLICATIONS FOR PRACTICE: By qualitative and quantitative analyses of the emotional and cognitive perceptions of cancer patients and their caregivers about their experiences before and during EPC interventions, this study may help physicians/nurses to focus on the disease perception by patients/caregivers and the benefits of EPC, as a standard practice. The analysis of words used by patients/caregivers provides a proxy for their psychological condition and support in tailoring an EPC intervention, based on individual needs. This study highlights that the relationship of the triad EPC team/patients/caregivers may rise as a therapeutic tool, allowing increasing awareness and progressive acceptance of the idea of death.