Psychologue en équipe mobile de soins palliatifs, nous intervenons en pluridisciplinarité en intrahospitalier mais aussiauprès de structures relevant du sanitaire et du social. Nous avons pu constater que les professionnels du handicap ont un lien d'attachement particulier à leurs résidents. L'accompagnement des résidents dans le quotidien et les projets de vie inhérents aux institutions sont le signe d'un transfert et d'un contre-transfert massifs. Dans ce contexte, penser l'éventualité de la mort des résidents est marqué du sceau du refoulement. Le fantasme d'immortalité - "ça n'arrive qu'aux autres" - est présent, ce qui peut empêcher la parole à ce sujet et susciter des angoisses primitives.
But de l'étude : évaluer l'efficacité analgésique de l'injection de morphiniques par une chambre à cathéter implantable intrathécal pour les douleurs cancéreuses réfractaires.
Type d'étude : étude prospective expérimentale, mono centrique.
Matériel et méthode : nous avons inclus tous les patients de plus de 18 ans vus en consultation douleur, de mars 2015 à juin 2018 qui présentaient une douleur chronique d'origine cancéreuse. Ceux qui présentaient une contre-indication à la technique ou une injection-test non efficace non pas été inclus. Mise en place du cathéter intrathécal lombaire et administration de la morphine dont la posologie est fonction du résultat obtenu lors de l'injection-test. Les critères de jugements principaux sont : l'évaluation de l'intensité de la douleur par l'échelle visuelle analogique, et la qualité de vie des malades. L'analyse statistique a utilisé le logiciel Statistical Package for the Social Sciences.
Résultats : 61 patients étaient inclus dans l'étude, mais seulement 24 patients ont bénéficié d'un site implantable intrathécal. L'âge moyen à l'instauration de l'analgésie était de 55,45 ans plus ou moins 7,12 années. Le délai entre le diagnostic et l'implantation était de 3,61 ans en moyenne. La localisation du cancer primitif est essentiellement génito-urinaire et digestif, et la localisation des douleurs est essentiellement pelvi-péritonéale. On note que la douleur a chuté de 54,58 %, avec une nette amélioration de la qualité de vie. Un cas de fuite du liquide céphalorachidien, une infection locale au point de ponction, et un cas d'infection de la loge, qui ont répondu au traitement.
Conclusion : au terme de cette analyse, il fau bien reconnaître que l'analgésie intrathécale procure une analgésie de très bonne qualité, mais il existe une proportion non négligeable de complications, pour cela elle n'est proposée qu'aux patients qu'en dernier recours.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time.
METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient.
RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services.
CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Objectives: A randomized control trial (RCT) to estimate the effect of an interventional video on improving palliative care knowledge, acceptability and attendance to outpatient services in gynecologic oncology patients.
Methods: Women receiving treatment for gynecologic malignancy recruited at an academic tertiary care center were randomized to: palliative care educational video or non-directive cancer center video. The primary outcome was referral to palliative care. Function and knowledge were assessed using the Functional Assessment of Cancer Therapy and the Palliative Care Knowledge Scale. Data analyses were performed using t-tests, Wilcoxon rank sum or Fisher's exact tests with significance level of a = 0.05.
Results: 111 women were enrolled. Demographic characteristics were equally distributed between groups with respect to age, race, cancer, and stage. There was no statistical difference in knowledge scores or in referral to palliative care between the patients that watched the educational versus control video (29% vs. 27%; p = .79). Secondary analysis showed a statistically significant increase in utilization of palliative care services compared to historic institutional data (8.8% to 31.5%; p =.001). Further, those referred had significantly worse baseline functional scores.
Conclusions: Use of a palliative care educational video did not increase knowledge or acceptability of palliative services within this RCT. However, the rate of patients referred to palliative care tripled compared to historic rates. Further studies should investigate whether discussion regarding palliative care services alone may increase desire for referral, and if use of Fact-G scores may identify patients in greatest need of services.
PURPOSE: This study evaluated the effect of early integrated palliative care (PC) in oncology on quality of life (QOL) near the end of life and use of health care resources near the end of life.
METHOD: Patients with advanced cancer and a life expectancy of approximately 1 year were randomly assigned to either early and systematic integration of PC into oncological care (intervention) or standard oncological care alone (control). QOL was assessed with the EORTC QLQ-C30 global health status/QOL scale and McGill Quality of Life (MQOL) Single Item Scale and Summary Scale at baseline, 12 weeks and 6 weekly thereafter until death. Use of health care resources was collected from chart review in patient's electronic medical file for patients who died while participating in the study.
RESULTS: Of the 186 randomised patients, 185 participants had a baseline measurement and were analysed. By November 2017, 128 patients had died while participating in the study. When applying the terminal decline model, patients in the intervention group scored significantly higher on global health status/QOL of the EORTC QLQ C30, at 6 months (difference: 5.9 [0.06; 11.1], p = 0.03), 3 (difference: 6.8 [1.0; 12.6], p = 0.02), and 1 month (difference: 7.6 [0.7; 14.5], p = 0.03) prior to the patient's death compared to the control group. Similar results were found for the Single Item Scale and Summary Score of the MQOL. We did not observe differences in use of health care resources between groups.
DISCUSSION: Early integrated palliative care in oncology is a valuable approach since it also increases QOL near the end of life and not only soon after initiation of PC.
CONTEXT: While palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
OBJECTIVES: We sought to describe oncologists' current understanding of PC and how primary PC is provided for children with cancer.
METHODS: This mixed-methods study explored pediatric oncology providers' definitions of PC and self-reported PC practices through semi-structured audiotaped interviews. Conventional content analysis was applied to interview transcripts.
RESULTS: 77 participants with diverse training backgrounds (30 attending physicians, 21 nurses, 18 fellows, 5 nurse practitioners, and 2 child life specialists) completed an interview. Approximately 75% provided a modern definition of PC (e.g. not limited to end-of-life care); all participants acknowledged primary PC skills as part of their daily clinical activities. However, participants expressed wide variation in the comfort and time spent performing primary PC tasks (i.e. symptom management, addressing mental health and psychosocial needs) and over half reported that patients' PC needs are not adequately met. Additionally, some reported confusion about the benefits of PC consultation, despite acknowledging that PC needs to be better integrated into the care of pediatric oncology patients.
CONCLUSIONS: Our findings demonstrate that while most pediatric oncologists accept a modern definition of PC in theory, how to integrate PC in pediatric oncology practice is less understood. Formalized training and standardization of practice surrounding identification of PC needs in patients who may require secondary or tertiary PC services may help to overcome current barriers for PC integration in pediatric oncology.
BACKGROUND: There is a dearth of research focusing on identifying the social complexities impacting on oncology and palliative care (PC), and no study has explored how the health-care system in Nigeria or other African contexts may be influencing utilization of these services.
AIM: This study explored how social complexities and the organization of health-care influenced the decision-making process for the utilization of oncology and PC in a Nigerian hospital.
METHODS: This qualitative study used an interpretive descriptive design. Data were collected using semistructured interview guides with 40 participants, comprising health-care professionals, patients, and their families. Thematic analysis was conducted to generate and analyze patterns within the data.
FINDINGS: Three themes were identified: dysfunctional structural organization of the health-care delivery system, service-users' economic status, and the influence of social networks. The interrelationship between the themes result in patients and their family members decisions either to present late to the hospital, miss their clinical appointments, or not to seek oncological health care and PC.
CONCLUSION: This article offers insights into the role of the health-care system, as organized currently in Nigeria, as "autoinhibitory" and not adequately prepared to address the increasing burden of cancer. We therefore argue that there is a need to restructure the Nigerian health-care system to better meet the needs of patients with cancer and their families as failure to do so will strengthen the existing inequalities, discourage usage, and increase mortality.
PURPOSE OF REVIEW: Patients with gynecologic malignancies experience varied and often difficult-to-manage symptoms through their disease course, along with decisions surrounding preferences for advance care planning. This review focuses on evidence-based symptom management for these patients and offers a framework for conversations regarding goals of therapy.
RECENT FINDINGS: There is increasing literature on palliative care specifically in gynecologic oncology, including barriers and possible solutions for early palliative care use, along with updated guidelines on postoperative pain management and tools for communication.
SUMMARY: Integration of early palliative care and focus on symptom management is an important and multidisciplinary approach to help patients with gynecologic malignancies.
Background: Difficulty sleeping is a common symptom for patients living with cancer that significantly affects their lives. However, although sleep disorders are common, it is an overlooked problem in cancer care.
Purpose: This study assessed the prevalence of sleep disturbances among patients living with cancer, and assessed the adequacy of sleep assessment and intervention for patients from both nurses' and patients' perspectives.
Method: Descriptive, cross-sectional and correlational design was used in this study. A convenience sample of 129 patients with cancer and 113 registered nurses working with cancer patients was recruited. A structured face-to-face interview was used to complete the patients' questionnaires and a self-administered questionnaire was given to nurses.
Findings: The majority of patients with cancer reported having poor sleep quality (69.8%). About 86.7% (n=98) of nurses reported that they have never screened patients with cancer for any sleep problems, and 76.7% (n=99) of the patients reported that they have never been assessed for sleep problems by the nursing staff during hospitalisation. Only 8% of patients with cancer who reported having problems sleeping to a nurse received interventions to promote better sleep.
Conclusion: Assessment of sleep disturbances in patients with cancer should be unified using a comprehensive reliable valid instrument, as well as providing evidence-based interventions according to patient's need. A written policy should be introduced to encourage sleep documentation and to make sleep care for patients part of routine nursing care.
The 41-item Comprehensive Assessment Tool for Cancer Caregivers (CNAT-C) is an English language survey for needs assessment developed and validated in South Korean cancer caregivers. The objective of this study was to validate both the English and a translated Chinese version of the CNAT-C in cancer caregivers in Singapore.
This was a cross-sectional survey where cancer caregivers completed the CNAT-C and World Health Organisation Quality-of-life BREF (WHOQOL-BREF) in English or Chinese. Cronbach's alpha was used to measure internal consistency. Convergent validity was assessed using Pearson correlation coefficients between CNAT-C scores and WHOQOL-BREF domains. For known groups validity, independent samples t-test was used to compare CNAT-C scores based on Karnofsky performance status.
There were 161 cancer caregivers - 80 answered the english version and 81 answered the Chinese version. For the English version, 33.8% were male and the lean age was 46.9 years. For the Chinese version, 27.2% were male and the mean age was 52.6 years. The total CNAT-C score and most domain scores showed good internal consistency, low to moderate convergent validity with WHOQOL-BREF domains and good known groups validity with performance status in both the English and Chinese versions. Domain 1 (health and psychological problems) in the Chinese version did not show convergent validity although there was evidence of known groups validity. Domain 5 (religious/spiritual support) also did not show validity in our study sample.
In summary, there was low to moderate convergent validity with the WHOQOL-BREF for both the English and translated Chinese versions. However, both language versions of CNAT-C showed good internal consistency and good known groups validity according to performance status, and both language versions of the CNAT-C can be used to assess the level of unmet needs for cancer caregivers in the Singapore context.
Context: The effect of methadone on corrected QT interval (QTc) in patients with cancer pain is not well-known.
Objectives: To describe and characterize the effect of low-, moderate-, and high-dose enteral methadone on QTc interval in patients with cancer.
Methods: Retrospective cohort study including patients prescribed enteral methadone during the 27-month study period. Participants were divided into 3 methadone daily dose groups: <30 (low dose), 30 to 59 (moderate dose), =60 (high dose) mg. The primary outcome was the incidence of QTc prolongation (>450 ms for females and >430 ms for males). Secondary outcomes included the magnitude of change in QTc after starting methadone, the incidence of clinically significant QTc prolongation (>500 ms) and the prevalence of torsades de pointes and syncope.
Results: Two hundred three patients met study inclusion criteria: 91 (45%) low dose, 52 (26%) moderate dose, and 60 (29%) high dose. Incidence of QTc prolongation for low-, moderate-, and high-dose groups was 50 (55%), 37 (71%), and 43 (72%), respectively (P = .039, low vs high dose). Incidence of clinically significant QTc prolongation was 10 (11%), 4 (8%), and 7 (12%) for low-, moderate-, and high-dose groups. For patients without QTc prolongation prior to initiating methadone, 62% of moderate-dose patients and 67% of high-dose patients had QTc prolongation, while taking methadone.
Conclusion: This study found a notably high incidence of QTc prolongation in patients with cancer using enteral methadone. Future studies should aim to determine the risk of adverse cardiac effects in the cancer population and determine appropriate monitoring of methadone for pain management.
BACKGROUND: Diagnosis and treatment of incurable cancer as a life-changing experience evokes difficult existential questions.
AIM: A structured reflection could improve patients' quality of life and spiritual well-being. We developed an interview model on life events and ultimate life goals and performed a randomized controlled trial to evaluate the effect thereof on quality of life and spiritual well-being.
DESIGN: The intervention group had two consultations with a spiritual counselor. The control group received care as usual. EORTC QLQ-C15-PAL and the FACIT-sp were administered at baseline and 2 and 4 months after baseline. Linear mixed model analysis was performed to test between-group differences over time.
PARTICIPANTS: Adult patients with incurable cancer and a life expectancy >=6 months were randomized in a 1:1 ratio to the intervention or control group.
RESULTS: A total of 153 patients from six different hospitals were included: 77 in the intervention group and 76 in the control group. Quality of life and spiritual well-being did not significantly change over time between groups. The experience of Meaning/Peace was found to significantly influence quality of life (beta = 0.52, adj. R(exp2) = 0.26) and satisfaction with life (beta = 0.61, adj. R(exp2) = 0.37).
CONCLUSION: Although our newly developed interview model was well perceived by patients, we were not able to demonstrate a significant difference in quality of life and spiritual well-being between groups. Future interventions by spiritual counselors aimed at improving quality of life, and spiritual well-being should focus on the provision of sources of meaning and peace.
We would like to thank Wen Yang Goh and Han Yee Neo for their interest in and valuable comments to our recently published article. They highlight key conceptual differences between geriatric assessment and comprehensive geriatric assessment and point to the distinction between vulnerability and frailty.
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Palliative care as a foundation for patient-centered care is not adequately covered in nursing curricula. This gap in education means that pediatric oncology nurses may lack necessary palliative care competencies to provide comprehensive care to patients. A literature review was performed to determine if nurses believe that they are prepared to provide clinical palliative care to pediatric patients and how pediatric palliative care best practices can be better integrated into nursing education programs. According to the literature review, studies suggest that providing pediatric palliative care education in nursing programs can build nurses' confidence and better prepare them to competently care for patients and families.
BACKGROUND: Oncology nurses are pivotal in the provision of primary palliative care. However, nurses working in oncology settings, where the goal is often curative, may lack knowledge about and comfort in providing palliative care.
OBJECTIVES: The purpose of this study is to determine how oncology nurses perceive their ability to provide palliative care services to patients and their families.
METHODS: Using Benner's theory of skill acquisition as a basis for self-evaluation, this cross-sectional, descriptive pilot study surveyed oncology nurses.
FINDINGS: All participants reported ranges from capable to very capable in ability to provide precepts of palliative care. Results showed a small but statistically significant association between years of experience and perceived ability to honor patient and family preferences, provide patient and family support, appreciate demands placed on families, and provide supportive services to caregivers.
Interventional Oncology (IO) represents an evolution of powerful minimally invasive therapeutic procedures within the discipline of interventional radiology, driven inlarge part by rapid technological innovation. In modern medical centers, IO is established as the“fourth pillar”of multi-disciplinary oncologic care, alongside oncology, surgery, andradiation oncology.
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Objectives: Recent evidences show that early integration of palliative care (PC) with oncology has a positive impact on patients' quality of life, quality of care and costs. However, there is no consensus on outpatient referral criteria. Based on real world data, the aim of this study was to identify timing and factors associated to PC referral in patients with thoracic malignancies, and to describe their clinical care pathway.
Material and Methods: This observational retrospective study included consecutive patients with thoracic cancer, seen for the first time at the Thoracic Medical Oncology outpatient Clinic (TMOC) of our institution, between Jan.01-Dec.31 2014. Patients were followed-up till death or Dec.31 2015. Clinical and demographic data were collected from the electronic patient records. Cox regression models were used to evaluate the association between time to Palliative care Outpatient Clinic (POC) referral and performance status (PS), disease stage and symptoms at inclusion.
Results: 229 patients were eligible. 98 of them (43%; 95%IC 36%–49%) were referred to the POC within a median of 30 days (IQR 4–188). 80/98 patients received simultaneous anticancer therapy and PC. Univariable analysis showed that the hazard ratio (HR) of being referred to POC was significantly higher for patients with worse PS (HR = 4.5), more advanced disease stage (HR = 3.1), pain (HR = 4.9), dyspnea (HR = 2.5) and cough (HR = 2.2). The multivariable model confirmed independent prognostic value for PS, disease stage and pain. On Dec.31, 2015, 25/98 patients were still alive, 8 were lost at follow up and 65 had died. Among the latter, 61% died with hospice or home care, and, in the last 30 days of life, 16% received chemotherapy and 29% were admitted to hospital.
Conclusions: Our results suggest considering symptom burden, PS and disease stage as screening criteria for referral to PC in patients with thoracic malignancies.
Shortly after radiotherapy was first used in the treatment of cancer in the late 1800s, adistinction was created between radical or curative radiotherapy and palliative radio-therapy with markedly divergent goals. In contrast with radical radiotherapy, in whichthe treatment goal is cure of cancer, palliative radiotherapy focuses on the applicationof radiotherapy to improve symptoms, with the goal of maximizing quality of life.
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BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear.
AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses.
DESIGN: A constructivist qualitative grounded theory study was conducted.
SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center.
RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward.
CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.