Introduction: Du fait de la toxicité veineuse périphérique des produits utilisés, la pose d’une chambre implantable s’intègre dans la prise en charge globale d’un patient devant bénéficier d’une chimiothérapie anticancéreuse curative ou palliative. Si ce geste peut apparaître anodin car réalisé quotidiennement, il reste souvent un élément marquant dans l’histoire du patient du fait de son retentissement tant physique que psychologique. Le but de cette étude était d’évaluer le niveau d’anxiété préopératoire et la satisfaction des patients ayant bénéficié de cette intervention.
Méthodes: Nous avons mené une étude monocentrique rétrospective basée sur un questionnaire comportant 28 questions à choix multiples et une question libre. Le questionnaire a été envoyé par voie postale à l’ensemble des patients ayant bénéficié de la pose d’une chambre implantable entre le 01/01/2016 et le 31/12/2016. Les questions exploraient les phases préopératoire (anxiété et information), peropératoire (douleur et prise en charge) et postopératoire (douleur, prise en charge et satisfaction).
Résultats: Quarante-huit questionnaires ont été reçus et analysés ce qui représente un taux de participation de 40 %. Trente-quatre patients (70 %) étaient des femmes. L’âge moyen était de 60±19 ans. Pour 35 patients (73 %), il s’agissait de leur première intervention de ce type. Avant l’opération, le niveau médian d’anxiété était estimé à 5/10 [extrêmes : 2–8]. Quarante-deux patients (88 %) avaient reçu une information préalable à la réalisation du geste avec un niveau médian de satisfaction par rapport à cette information de 9/10 [extrêmes : 8–10]. La qualité médiane de l’accueil en salle d’opération était estimée à 9/10 [extrêmes : 8–10], la qualité du séjour peropératoire à 10/10 [extrêmes : 8–10] et le niveau médian d’anxiété au décours du geste à 1/10 [extrêmes : 0–5]. Douze patients (25 %) ont ressenti des douleurs d’une intensité moyenne cotée à 1±2/10 sur l’échelle numérique. Après l’intervention, 19 patients (40 %) ont ressenti des douleurs d’une intensité médiane cotée à 2/10 [extrêmes : 0–5] sur l’échelle numérique et traitées par des antalgiques de niveau 1 dans 100 % des cas. La satisfaction médiane vis-à-vis de l’accompagnement au cours du séjour hospitalier pour la mise en place de la chambre implantable a été évaluée à 9/10 [extrêmes : 8–10], à 10/10 [extrêmes : 8–10] pour la prise en charge anesthésique et à 9/10 [extrêmes : 7–10] pour la prise en charge globale au cours du séjour hospitalier.
Discussion: La mise en place d’une chambre implantable pour une chimiothérapie anticancéreuse reste un événement marquant dans l’histoire d’un patient, source d’anxiété préopératoire marquée. La satisfaction globale des patients quant à leur parcours de soin est bonne mais pourrait encore être améliorée. Une bonne relation "soignant–soigné" à toutes les étapes de la prise en charge et une fluidification du parcours de soins du patient sont probablement les éléments devant permettre d’améliorer plus encore la satisfaction des patients.
Objective: The current study was conducted aiming at the investigation of pain beliefs and perceptions and their relationship with coping strategies, stress, anxiety, and depression in patients with cancer.
Materials and Methods: Study design: This was a descriptive-correlational and cross-sectional study. Data collection tools - Demographic questionnaire, Pain Beliefs and Perceptions Inventory, Pain Coping Strategies Questionnaire (Rosenstiel and Keefe), and Depression, Anxiety, and Stress Scale were used in this study. The dataset was analyzed using descriptive and infreretial statistics that included the chi-square and one-way ANOVA with software SPSS v.16 analysis.
Results: Findings of the study indicated that the most common belief about pain in patients is pain permanence. In addition, the most commonly used strategies for coping pain in patients were praying/hoping (25.82 ± 7.86) and self-statements (22.3 ± 10.34). Results indicated that there is a significant difference between pain coping strategies and pain control (P = 0.02). No significant difference was observed between the pain beliefs and the coping strategies (P = 0.15). Depression and anxiety level of patients was estimated as moderate, and their stress was estimated as mild. It was specified that there is a significant difference between self-blame belief and depression of patients (P = 0.01).
Conclusion: Understanding and identifying emotional-psychological variables in patients with chronic pains may provide a basis for implementing educational cognitive-behavioral programs for patients and the ground for increasing the ability to control the pain in nonpharmacological methods leading to promoting quality of life in these patients.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
When patients face advanced illness, their experience of care is especially important. In palliative care, we often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no validated patient-reported measures of the experience of care. We report therefore on a new questionnaire, Views on Care (VOC), to address this gap. It consists of four questions (see the following link for full questionnaire: www.pos-pal.org) selected/refined from St Christopher’s Index of Patient Priorities (SKIPP)1, which address patients’ evaluation of (1) change in their main concerns, (2) benefit from palliative services, (3) previous and (4) current quality of life (3 and 4 adapted from EORTC QLQ-C15-PAL – well-validated in advanced illness2).
BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases.
OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year).
DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation.
PARTICIPANTS: Adults with advanced, life-limiting illness.
MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL.
KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took = 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms.
CONCLUSIONS: Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting.
NIH TRIAL REGISTRY NUMBER: ClinicalTrials.gov Identifier for Parent Study - NCT01415934.
BACKGROUND: Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view.
METHODS: Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire.
RESULTS: A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers’ listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach’s a 0.5–0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS = 60%, 40–50% and = 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms’ severity and impact on life. Each subscale, except “possibility to refuse”, correlated with general satisfaction.
CONCLUSIONS: Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings.
BACKGROUND: Maintaining quality of life including physical functioning is highly prioritized among older cancer patients. Geriatric assessment is a recommended approach to identify patients with increased vulnerability to stressors (frailty). How frailty affects quality of life and physical functioning in older cancer patients has scarcely been investigated.
AIM: Focusing on physical functioning and global quality of life, we investigated whether frailty identified by a geriatric assessment was associated with higher risk of quality-of-life deterioration during cancer treatment and follow-up.
DESIGN: Prospective, observational study. Patients were classified as frail or non-frail by a modified geriatric assessment. Quality of life was measured using the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire at inclusion, 2, 4, 6 and 12 months.
SETTING: Eight Norwegian outpatient cancer clinics.
Patients Patients >=70 years with solid tumours referred for palliative or curative systemic medical cancer treatment.
RESULTS: Among 288 patients included, 140 (49%) were frail and 148 (51%) non-frail. Frail patients consistently reported poorer scores on all functioning and symptom scales. Independent of age, gender and major cancer-related factors, frail patients had significantly poorer physical functioning and global quality of life during follow-up, and opposed to non-frail patients they had both a clinically and statistically significant decline in physical functioning from baseline until 12 months.
CONCLUSIONS: Geriatric assessment identifies frail patients with increased risk of physical decline, poor functioning and high symptom burden during and following cancer treatment. Frail patients should therefore receive early supportive or palliative care.
Aim of the study: The McGill Quality of Life Questionnaire has been widely used for people with life-threatening illnesses since 1996. In 2016 Cohen et al. revised the McGill Quality of Life Questionnaire and improved its psychometric properties and length. The aim of the present study was to adapt the McGill Quality of Life Questionnaire - Revised (MQOL-R) into Polish. The study assessed the factorial structure, reliability, and validity of the Polish adaptation of the MQOL-R.
Material and methods: The study had a non-randomised, cross-sectional design. The Polish translation of the MQOL-R was administered to 140 people with life-threatening illnesses. Patients were recruited from acute and palliative care units. Data were analysed using confirmatory factor analysis, and correlational and multiple regression analyses.
Results: The results provide support for the measurement structure of the Polish adaptation of the MQOL-R. Both the overall scale and four subscales have satisfactory internal consistency and the construct and concurrent validity.
Conclusions: The Polish MQOL-R is psychometrically sound and may serve as a valuable asset in research on quality of life of people with life-threatening illnesses.
OBJECTIVE: Death acceptance may indicate positive adaptation in cancer patients. Little is known about what characterizes patients with different levels of death acceptance or its impact on psychological distress. We aimed to broaden the understanding of death acceptance by exploring associated demographic, medical and psychological characteristics.
METHODS: At baseline, we studied 307 mixed cancer patients attending the University Cancer Center Hamburg and a specialized lung cancer center (age M=59.6, 69% female, 69% advanced cancer). At one-year follow-up, 153 patients participated. We assessed death acceptance using the validated Life Attitude Profile-Revised. Patients further completed the Memorial Symptom Assessment Scale, the Demoralization Scale, the Patient Health Questionnaire, and the Generalized Anxiety Disorder Questionnaire. Statistical analyses included multinomial and hierarchical regression analyses.
RESULTS: At baseline, mean death acceptance was 4.33 (SD=1.3, range 1-7). There was no change to follow-up (p=.26). When all variables were entered simultaneously, patients who experienced high death acceptance were more likely to be older (OR=1.04, 95%CI 1.01-1.07), male (OR=3.59, 95%CI 1.35-9.56), widowed (OR=3.24, 95%CI 1.01-10.41), and diagnosed with stage IV (OR=2.44, 95%CI 1.27-4.71). They were less likely to be diagnosed with lung cancer (OR=.20, 95%CI .07-.58) and their death acceptance was lower with every month since diagnosis (OR=.99, 95%CI.98-.99). High death acceptance predicted lower demoralization and anxiety at follow-up, but not depression.
CONCLUSIONS: High death acceptance was adaptive. It predicted lower existential distress and anxiety after one year. Advanced cancer did not preclude death acceptance, supporting the elaboration of death-related concerns in psychosocial interventions.
Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.
Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.
Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.
Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).
Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43–0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35–2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.
Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.
PURPOSE: To compare symptomatic treatment at inpatient palliative care unit and at home in terms of: pain intensity; negative impact of pain on functioning in different areas of life; and beliefs about pain (cognitive and emotional aspects according to Leventhal's theory).
PATIENTS: The sample consisted of 74 cancer patients qualified for palliative care at an inpatient unit (N = 53) and at home (N = 21).
METHODS: Brief Pain Inventory--Short Form (measurement of pain intensity and pain interference with daily activities), Karnofsky Scale (performance status), Illness Perception Questionnaire for cognitive and emotional representations and beliefs about pain, and Hospital Anxiety and Depression Scale.
RESULTS: Patients treated at inpatient unit and patients treated at home did not differ in terms of pain intensity, depression, and anxiety. The only significant differences between groups were the beliefs about pain. Patients with cancer in home care were more convinced of pain treatment effectiveness but expressed higher level of distress related to pain. Patients convinced that pain can be treated more effectively were younger, the pain they experienced was less severe, and they were treated at home.
CONCLUSIONS: Effectiveness of symptomatic treatment is comparable in patients with cancer at inpatient unit and at home. Treatment at home is associated with stronger patient convictions that pain can be effectively treated and higher level of distress. In future studies, the source of higher distress intensity in patients treated at home may be further explored.
Introduction: To determine the prevalence, severity, and change in symptoms experienced by dialysis patients following the introduction of use of a symptom-reporting questionnaire in nephrology clinic.
Methods: This is an observational study of 160 prevalent dialysis patients. Palliative care Outcome Scale symptom (POS-renal) questionnaires modified for patients with end-stage kidney disease were completed at baseline and follow-up (median 3 months), with results available to nephrologists at clinic appointments.
Findings: The baseline prevalence of individual symptoms ranged from 15% to 66%. The most common symptoms were lack of energy (66%) and poor mobility (58%). The median number of symptoms was 7/17 (interquartile range [IQR]: 4-10). Forty-nine percent of patients rated at least 1 symptom as severe or overwhelming. At follow-up, the median number of symptoms experienced was unchanged at 7/17 (IQR: 3-10). However, there was considerable flux in symptom severity. On average, individual symptoms that were present at baseline improved in 56% of patients and worsened in 18%; only 26% had stable symptom severity. Individual symptoms newly occurred in 8% to 20% of patients between time points, with 77% of patients experiencing at least 1 new symptom. The percent of patients rating at least 1 symptom as severe or overwhelming was reduced from 49% to 39% (P = .040).
Conclusions: Use of the POS-renal questionnaire identified a high symptom burden. The presence and severity of symptoms changed dramatically over a short follow-up period, highlighting the need for regular surveillance of symptoms in the dialysis population. Routine use of a symptom questionnaire in clinic may be useful for the identification and management of symptoms in dialysis patients.
Objective: The study examines psychophysical distress of health-care professionals providing home-based palliative care. The aim is to investigate potential correlations between dimensions of burnout and different coping strategies.
Methods: The present study is an observational cross-sectional investigation. The study involved all the home palliative care teams of an Italian nonprofit organization. Of a total of 275 practitioners working for the organization, 207 (75%) decided to participate in the study and complete questionnaires. Questionnaires employed were Maslach Burnout Inventory, General Health Questionnaire 12, Psychophysiological Questionnaire of CBA 2.0, and Coping Orientation to Problems Experienced. Professionals were physicians (50%), nurses (36%), and psychologists (14%). There were no exclusion criteria. Data were processed by SPSS 23 and analyses employed were Spearman , Mann-Whitney U test, and 1-way analysis of variance on ranks.
Results: Among participants, a low number of professionals were emotionally exhausted (11%) or not fulfilled at work (20%), whereas most of them complained of depersonalization symptoms (67%). Emotional exhaustion and depersonalization were found to be associated with avoidance coping strategies, whereas problem-solving and positive attitude were negatively associated with emotional exhaustion and positively with personal accomplishment. Moreover, using avoidance strategies was related to a worse psychological and physical condition.
Conclusions: Findings suggest the need to provide professionals training programs about coping and communication skills tailored to fit the professionals' needs according to their work experience in palliative care and aimed at improving the approach to patients and relatives.
Context: Frequency of passive decisional control preferences (DCPs) has been variably reported but is generally higher among patients living in developing countries.
Objectives:This prospective cross-sectional study aimed to determine the frequency of passive DCP among patients with advanced cancer in a tertiary cancer center in India and to identify its association with their sociodemographic and clinical characteristics.
Methods: Patients with advanced cancer referred to palliative care (between March and August 2016) underwent assessment of DCP using validated tools including Control Preference Scale, Satisfaction with Decision Scale, and understanding of illness questionnaire. Information regarding patient characteristics including age, gender, education, marital status, employment, Karnofsky Performance Status Scale (KPS), cancer stage and type, and religion were also collected. Descriptive statistics and logistic regression analyses were performed.
Results: Median age 48 years, Karnofsky 90, and 55.3% were men. Shared, active (patient prefers to make decision by his or her own), and passive DCP were 20.7%, 26.7%, and 52.7%, respectively (n = 150). A total of 51.3% were satisfied by the way the actual decisions were made. Passive DCP did not vary across regions. Multivariate analysis shows that the active DCP was significantly associated with better KPS (exp B 1.07 [1.01-1.15], P = .03).
Conclusions: There are significant differences in DCP with KPS. Patients report a high level of satisfaction with their treatment decision-making process, though they have a poor understanding of their prognosis and goals of care and understand their treatment to be of curative intent. Individualized understanding of DCP and focus on illness understanding may be important for quality care and patient satisfaction outcomes.
OBJECTIVES: An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input. The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers.
METHODS: A 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland.
RESULTS: The response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years.
CONCLUSIONS: A minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.
BACKGROUND: The benefits of hospice palliative care (HPC) for end-of-life (EoL) patients have been widely acknowledged in recent years. There is still limited knowledge about cancer patients' willingness toward HPC. This study aimed to investigate the willingness of cancer patients to receive HPC and the influencing factors.
METHODS: A cross-sectional study was conducted with cancer patients enrolled from teaching hospitals in Taiwan. The questionnaire included demographic characteristics, EoL care preferences, and scales for measuring the willingness to receive HPC, HPC knowledge, and attitude towards HPC. Data were collected by senior nurses and they were analyzed using descriptive and a regression analysis.
RESULTS: A total of 148 valid questionnaires were collected. The participants indicated that they 'willing to receive' HPC (mean3.8 on a 5-point scale). The predictors for their willingness to receive HPC were knowledge about HPC (P = 0.001), positive attitude towards HPC (P = 0.008), preference for hospital death (P = 0.022), and preference for quality of life (P = 0.047) as the goal of EoL care. These factors explained 32.7% of the total variance in the willingness to receive HPC.
CONCLUSIONS: Cancer patients were generally willing to receive HPC. Clinician should discuss EoL care with them earlier. Develop appropriate educational strategies that can provide cancer patients with sufficient and tailored HPC information to develop their knowledge and to create a positive attitude about HPC is necessary, thereby to allow for early HPC intervention and to fulfill the patients' need for HPC.
To evaluate the response and quality of life of palliative gastric radiotherapy in patients with symptomatic locally advanced gastric cancer. Patients with bleeding, pain or obstruction and were treated with palliative gastric radiotherapy to a dose of 36 Gy in 12 daily fractions. The primary outcomes were symptom response rates. Secondary outcomes included overall survival, adverse events and proportion of patients with =10-point absolute improvement in the fatigue, nausea/vomiting and pain subscales in the EORTC Qualify of Life Questionnaire C30 (EORTC QLQ-C30) and dysphagia/pain subscales in the gastric specific module (STO22) at the end of RT and 1 month after the completion of radiotherapy. Fifty patients were accrued. Median survival duration was 85 days. 40/50 patients (80%) with bleeding, 2/2 (100%) patients with obstruction and 1/1 (100%) patient with pain responded to radiotherapy. Improvements fatigue, nausea/vomiting and pain subscales of the EORTC QLQ-C30 was seen in 50%, 28% and 44% of patients at the end of RT and in 63%, 31% and 50% of patients 1 month after RT. Improvements in dysphagia/pain subscales of the STO22 was seen in 42% and 28% of patients at then end of RT and 44% and 19% of patients 1 month after RT. Two patients (5%) had grade 3 anorexia and gastritis. Palliative gastric radiotherapy was effective, well tolerated and resulted in improvement in fatigue, dysphagia and pain at the end of radiotherapy and 1 month after the completion of radiotherapy in a significant proportion of patients.
Les établissements médicosociaux, et plus spécifiquement les MAS (Maisons d'Accueil Spécialisées) et les FAM (Foyers d'Accueil Médicalisé), sont particulièrement concernés par la question de l'accompagnement en soins palliatifs et en fin de vie : parce qu'ils accueillent un public vieillissant, mais aussi parce qu'ils sont amenés à accompagner des situations de plus en plus complexes. Pour les personnes polyhandicapées ou atteintes d'un handicap sévère, l'entrée en établissement représente souvent le choix d'un lieu de vie définitif : c'est le lieu où elles vont vivre et finir leur vie, parfois prématurément du fait de leur vulnérabilité. Ces personnes et leur famille ont souvent eu à vivre déjà des deuils successifs : celui de la "bonne santé", de la vie au domicile, de l'autonomie et d'une certaine indépendance dans les activités du quotidien. Il appartient ainsi aux institutions d'inscrire la dimension palliative dans leur projet d'établissement. Pourtant, cette démarche semble parfois difficile : le rapport sur la fin de vie dans les établissements pour personnes adultes handicapées réalisé par l'Observatoire National de la Fin de vie en 2013 évoque ainsi une "fin de vie invisible". L'accompagnement palliatif en MAS et en FAM peut en effet soulever de nombreuses questions : à partir de quand une personne atteinte d'une pathologie évolutive et incurable relève-t-elle de soins palliatifs ? En quoi consiste un accompagnement en fin de vie, quand commence-t-il ? Quel est le cadre légal, et comment s'applique-t-il aux établissements médicosociaux ? Comment recueillir l'expression de la volonté de personnes dyscommunicantes, comment évaluer et soulager leur douleur ? Comment accompagner ces personnes, mais aussi leurs proches et les autres résidents de l'établissement ? Jusqu'où doit-on aller ? L'ensemble de l'équipe doit-il être impliqué ? C'est pour réfléchir collectivement à ces différentes questions que le groupement des MAS et FAM a décidé, en décembre 2015, de mettre en place un groupe de travail sur la démarche palliative en MAS et en FAM. Ce groupe a concrétisé deux projets : l'organisation d'une journée d'étude régionale (le 17 novembre 2017), et la réalisation de cette étude.
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Introduction : alors que l'intégration de la démarche palliative aux études de médecine est un des objectifs du plan national de développement des soins palliatifs, quelles sont les attentes des internes de médecine générale quant à une formation en soins palliatifs ?
Méthode : il s'agit d'une étude descriptive, réalisée à partie d'un questionnaire envoyé par mail aux internes inscrits en Diplôme d'Etudes Spécialisées (DES) de médecine générale de l'Université de Reims Champagne Ardenne (URCA) pour l'année universitaire 2016-2017. L'enquête s'est déroulée entre le 9 octobre et le 11 novembre 2017. Résultats : 93 réponses ont été analysées. Quatre-vingt-douze pour cent des répondeurs souhaitent une formation plus approfondie en soins palliatifs. Les principaux types de formations souhaités étaient : la discussion de cas cliniques en groupes, les stages d'initiation en structures de soins palliatifs et les débriefings sur les lieux de stage avec un médecin sénior. Ils souhaitaient la mise en place de cette formation en troisième cycle des études médicales et avant confrontation à des situations palliatives.
Discussion : la mise en pratique permet de nous améliorer dans la prise en charge du patient et de créer notre propre identité professionnelle en développant nos compétences. Le modèle de formation britannique est celui qui semble le plus adapté aux attentes de nos internes. Actuellement la formation des médecins évolue, avec l'application des mesures proposées par le plan national de développement des soins palliatifs. Désormais un enseignement sur les soins palliatifs et un stage court sont proposés en deuxième cycle des études médicales. Il parait primordial d'élargir cette mesure en troisième cycle.
Conclusion : les internes de médecine générale de l'URCA souhaitent une formation approfondie en soins palliatifs au cours du DES de médecine générale, avec mise en pratique clinique.
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