Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty.
Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty.
Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care.
Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.
Terminally ill cancer patients with limited life expectancies (LLEs) are often prescribed multiple medications to control acute symptoms associated with cancer such as dyspnoea, pain, nausea and vomiting, and anxiety. Medications are also commonly prescribed to prevent or treat other common, long-term comorbid conditions such as hypertension, diabetes mellitus and hyperlipidaemia. Early identification of unnecessary preventive medications at the end of life can improve quality of life. Limited research has investigated whether preventive medications are withdrawn in patients with terminal cancer. The aim of this project was to evaluate the prevalence of preventive medication use in terminally ill cancer patients with LLE of 6 months or less.
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BACKGROUND: Various factors affect the mortality of older adult residents of long-term care facilities. To provide adequate nursing care for older adults, it is necessary to understand the factors that affect their risk of mortality.
PURPOSE: This study was designed to (a) evaluate the 24-month survival rate and (b) identify the underlying cause of death in various dimensions, including cognitive, psychological, and physical function; nutritional status; and chronic disease.
METHODS: A longitudinal study was carried out between 2011 and 2013 at seven long-term care facilities. The participants comprised 276 residents who were all older than 65 years old. Baseline measurements included cognitive function (Mini-Mental State Examination for Dementia Screening), psychological function (Cornell Scale for Depression in Dementia), physical function (Barthel Index), nutritional status (Mini Nutritional Assessment, mid-arm circumference, and calf circumference), and chronic disease status (hypertension, diabetes mellitus, chronic respiratory disease, heart disease, and urinary incontinence). Data analysis included univariate and multivariate logistic regression to identify the main factors affecting mortality.
RESULTS: In 2011 (baseline), the mean age of the participants was 80.46 years (SD = 7.08) and most were female (73.6%). At the 24-month follow-up, 94 (34.1%) of the participants had died. The major factors affecting mortality were as follows: cognitive dysfunction (OR = 3.12, 95% CI [1.41, 6.90]), mid-arm circumference (< 22.5 cm; OR = 2.32, 95% CI [1.35, 3.96]), and urinary incontinence (OR = 2.04, 95% CI [1.16, 3.61]).
CONCLUSIONS: According to the findings, special attention is needed at the end of life to improve the quality of life of older adults with cognitive dysfunction, malnutrition (low mid-arm circumference), and urinary incontinence who reside in long-term care facilities.
Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers’ grief, quality of life and general health in relation to non-caregivers.
Aim: We aimed to determine how caregivers’ grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes.
Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months).
Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements.
Results: There were significant differences between the caregivers’ and comparisons’ grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death.
Conclusion: It took 9–10 months for the caregivers’ grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.
Background: Few studies have estimated planned home deaths compared to actual place of death in a general population or the longitudinal course of home nursing services and associations with place of death. We aimed to investigate trajectories of nursing services, potentially planned home deaths regardless of place of death; and associations of place of death with potentially planned home deaths and nursing service trajectories, by analyzing data from the last 90 days of life.
Methods: A retrospective longitudinal study with data from the Norwegian Cause of Death Registry and National registry for statistics on municipal healthcare services included all community-dwelling people who died in Norway 2012–2013 (n = 53,396). We used a group-based trajectory model to identify joint trajectories of home nursing (hours per week) and probability of a skilled nursing facility (SNF) stay, each of the 13 weeks leading up to death. An algorithm estimated potentially planned home deaths. We used a multinomial logistic regression model to estimate associations of place of death with potentially planned home deaths, trajectories of home nursing and short-term SNF.
Results: We identified four home nursing service trajectories: no (46.5%), accelerating (7.6%), decreasing (22.1%), and high (23.5%) home nursing; and four trajectories of the probability of a SNF stay: low (69.0%), intermediate (6.7%), escalating (15.9%), and increasing (8.4%) SNF. An estimated 24.0% of all deaths were potentially planned home deaths, of which a third occurred at home. Only high home nursing was associated with increased likelihood of a home death (adjusted relative risk ratio (aRRR) 1.29; CI 1.21–1.38). Following any trajectory with elevated probability of a SNF stay reduced the likelihood of a home death.
Conclusions: We estimated few potentially planned home deaths. Trajectories of home nursing hours and probability of SNF stays indicated possible effective palliative home nursing for some, but also missed opportunities of staying at home longer at the end-of-life. Continuity of care seems to be an important factor in palliative home care and home death.
Death metaphors are a meaningful way to understand personal perceptions of death, an important construct affecting how people live. This study collected death metaphor data among 100 university students in Hong Kong in 2016 and compared the findings with another study reported in 2004. Interpersonally oriented death metaphors were still popular among students a decade later. There was a general decrease in positive perception of death and an increase in negative perception of death from 2004 to 2016. Death metaphors are useful tools in death education programs, especially in cultures where death is a taboo topic.
OBJECTIVE: Soft tissue sarcoma (STS) is a rare cancer type that when locally advanced or metastatic, is predominantly treated with palliative chemotherapy with the aim of improving both quantity and quality of life. Given modest survival data after commencing first line chemotherapy, this study examines (i) what constitutes health related quality of life (HRQoL), (ii) whether the most commonly used HRQoL assessment tool measures this and (iii) to what extent HRQoL, and its components, change during and after treatment.
DESIGN: Mixed-methods longitudinal study of 66 sarcoma patients living with STS (42 commencing chemotherapy, 24 under surveillance after completing chemotherapy) involving serial EORTC QLQ-C30 questionnaires and nested-qualitative semi-structured interviews with a sub-sample of participants. EORTC QLQ-C30 score change from baseline to primary evaluation point was examined using a paired t-test. Interviews were analysed using the framework approach before both datasets were integrated.
RESULTS: Five main factors, including control of pain, were identified by study participants as important components of HRQoL; these are examined within the EORTC QLQ-C30. However, others e.g. independence loss and common causes of anxiety, are not. Whilst social and psychological domains are addressed by the EORTC QLQ-C30, the quantitative change over time did reflect qualitative descriptions of decline. The mean overall EORTC QLQ-C30 HRQoL score deteriorated from baseline (60.4) to the primary evaluation point (50.2) [change of -10.2, t-test: -2.70, p = 0.01] for those receiving chemotherapy; this was in concordance with patients' qualitative accounts. Baseline overall HRQoL scores were higher in the surveillance group suggesting a correlation with chemotherapy response and longer-term improvement in HRQoL. The evidence from both HRQoL scores and qualitative accounts indicated that the presence and control of physical symptoms were particularly important in maintaining HRQoL. Whilst fatigue deteriorated on chemotherapy (baseline 41.7 to 52.8; change of +11.1, t-test +2.51, p<0.05), pain (baseline 41.5 to 32.1; change -9.4, t-test -2.06 p<0.05) and sleep disturbance (43.1 to 28.5; change -14.6, t-test -3.05, p<0.05) both improved.
CONCLUSION: A key finding was that the EORTC QLQ-C30 assesses some but not all of the patient-reported components of HRQoL in sarcoma patients highlighting the need for either STS specific modules within the EORTC QLQ-C30 or a completely new STS specific HRQoL tool. First line palliative chemotherapy improves specific symptoms known to be prevalent and to influence HRQoL in this patient group which in some patients may translate to sustained improvement in HRQoL: further exploration and validation of these findings in larger prospective studies are warranted.
OBJECTIVE: How do caregivers' life satisfaction shift upon the recovery of an ill spouse? Paradoxically, there is a greater increase in life satisfaction upon death than recovery of a spouse. Our analysis explores this paradox.
METHOD: We follow the two groups of exiting caregivers longitudinally for four years from when the partner is still in need of care until the death (N= 152) or recovery (N= 112) of a previously ill partner, comparing their trajectory of life satisfaction. We use the years 2001-2016 of the German-Socio-Economic Panel Study and a growth-curve analysis.
RESULTS: Contrary to our expectations, bereaved caregivers experience a significantly stronger increase in life satisfaction than spouses whose partners recover from a serious illness, even when we stratify by age, gender and initial life satisfaction to account for significantly different subsample composition. Surprisingly, life satisfaction remains unchanged when the partner recovers. Only if a heavy burden in terms of unpaid care and housework hours or prior care need is lifted, do we observe an increase in life satisfaction among spouses with recovering partners, which is like the one experienced by bereaved caregivers.
BACKGROUND: Maltreated youth are at an elevated risk for the development of problem behaviors. Coping with the death of a family member or close friend during adolescence, referred to as bereavement, is a stressful event that could potentiate risk linked to maltreatment. However, developmental research suggests that youth adjustment is a product of multiple risk and protective factors. Although maltreated youth who experience loss may be particularly vulnerable to behavior problems, personal and contextual factors may attenuate or exacerbate youths' risk for internalizing and externalizing psychopathology.
OBJECTIVE: The overarching goal of this study is to examine individual, family, and community-level protective factors for maltreated youth who experience bereavement. Specifically, we aim to examine the effect of age 12 bereavement on age 16 internalizing and externalizing psychopathology, and to investigate the moderating role of multi-level protective factors at ages 14 and 16.
METHODS: The study consisted of a sample of 800 youth (52.4% female, 45.1% African-American) drawn from the Longitudinal Studies of Child Abuse and Neglect (LONGSCAN), collected from 1998 to 2011.
RESULTS: Maltreated youth who experienced significant loss were at increased risk for externalizing symptoms, compared to non-bereaved maltreated youth (ß = 0.085, p < .05). Individual future orientation (ß = 0.103, p < .05) family future orientation (ß = -0.120, p < .05), parental monitoring (ß = -0.123, p< .01), and neighborhood collective efficacy (ß = -0.126, p < .01) each significantly moderated the association between bereavement and externalizing symptoms.
CONCLUSIONS: These results have implications for future interventions aimed towards reducing problem behaviors in adolescents with a history of child maltreatment and who experience bereavement.
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life.
Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life.
Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (>=7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months.
Setting/participants: people living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics.
Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point.
Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.
OBJECTIVES: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges.
DESIGN: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit.
RESULTS: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients' difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success.
CONCLUSION: Patients' struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.
PURPOSE: Although patients with advanced cancer report poor sleep quality, few studies have assessed sleep quality with a combination of subjective and objective measures. We aimed to examine sleep quality in hospitalized patients with advanced cancer by combining patient-reported outcome-measures (PROMs) and polysomnography (PSG) or actigraphy.
METHODS: A one-night prospective observational study of sleep in hospitalized patients with metastatic cancer using WHO step III opioids was conducted. Total sleep time, sleep onset latency, number of awakenings, and wake after sleep onset were assessed by PROMs and actigraphy. Sleep quality was assessed by the Pittsburgh Sleep Quality Index (PSQI) (range; 0-21), where higher scores indicate worse sleep quality.
RESULTS: Forty patients were monitored. Median age was 70, median oral morphine equivalent dose was 80 mg/24 h (10–1725), median Karnofsky Performance Score was 50 (20–90), and median time to death from inclusion was 38 days (4–319). Mean PSQI score was 6.5 (SD ± 3.4). PROMs and actigraphy of mean (SD) sleep onset latency were 46 (± 64) and 35 min (± 61), respectively, while mean time awake at night was 37 (± 35) and 40 min (± 21). PROMs and actigraphy differed on number of awakenings (mean 2 (± 1) vs. 24 (± 15), p 0.001). Bland-Altman plots showed large individual differences between PROMs and actigraphy. PSG was not feasible.
CONCLUSIONS: PROMs and actigraphy documented poor sleep quality, but a lack of agreement across methods. The study demonstrates a need to improve assessment of sleep quality and treatment of sleep disturbance in hospitalized patients with advanced cancer near end of life.
Background: Diabetes is increasingly prevalent globally, including in palliative care. Guidelines vary as to the ideal glycemic goals for patients near the end of life. The relationship between hyperglycemia and attributable symptoms late in life remains ill defined.
Objective: To pilot the association between blood glucose level (BGL) and symptoms (nausea, fatigue, pain, and appetite) and mortality in palliative care patients with diabetes.
Design: This prospective observational consecutive cohort study consisted of 17 patients with diabetes admitted to an inpatient palliative care unit. Repeat measures of BGL and symptom distress scores using the patient-reported Symptom Assessment Scale (SAS) were recorded during a five-month period as was patient mortality. The association between BGL and SAS domains was assessed using negative binomial regression and the association between mortality and high versus low BGL was determined using log-rank statistics and Kaplan-Meier curves.
Results: All patients had malignancy: 15 had type 2 diabetes and 2 had steroid-induced diabetes. A total of 121 patient observation days were included in the analysis. BGL was inversely associated with patient-reported SAS for nausea (incidence rate ratio [IRR] = 0.83, 95% confidence interval [CI] = 0.70–0.99, p = 0.04), but not other symptoms. Insulin usage was also associated with decreased nausea (IRR = 0.24, 95% CI = 0.09–0.60, p = 0.002). Survival did not differ between low- and high-BGL groups.
Conclusion: These findings warrant a larger multisite consecutive cohort study and a re-exploration of current clinical practice. Ultimately, interventional trials comparing strict versus more liberal glycemic control on symptom management and survival are the ideal design to better understand differing levels of glycemic control at the end of life.
Background: Palliative patients generally present with symptoms of dyspnea, easy fatigability, lethargy and feeling of being unwell which can broadly be attributed to one root cause: cancer-related anemia. So, packed red cell transfusion is often carried out aiming to improve patients’ functional status. Different cut off hemoglobin values have been suggested, with Hb < 9 g/dL the most commonly accepted. The present study aims at evaluating and comparing the benefits in subjective symptoms of fatigue and breathlessness among transfused and non-transfused palliative patients on Day 0 and Day 7.
Methods: Hemoglobin values, anemia related subjective symptoms of fatigue and breathlessness were recorded from 122 patients. The patients were re-evaluated on day-7 post-transfusion. The pre and post-transfusion symptomatic benefit was compared in both transfused and non-transfused palliative care patients.
Results: The currently practiced hemoglobin trigger for packed red cell transfusion is 10 g/dL. The units of packed red cell to be transfused was decided according to the hemoglobin values targeting the rise to > 10 g/dL. A mean 1.36 units were transfused. Statistically significant improvement was observed in patient reported symptoms of fatigue and breathlessness among both transfused and non-transfused palliative patients.
Conclusion: Anemic cancer palliative patients were found to benefit following packed red cell transfusion, suggesting a favorable association between the transfusion and patient-reported fatigue and dyspnea.
BACKGROUND: A growing number of older people, mainly women, live in single households. They represent a vulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end of life. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay at home even at the end of life. This paper aims to introduce the research protocol.
METHODS: We plan to apply a qualitative longitudinal study to better understand how older people living alone and their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We will conduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 complete data sets and up to 200 personal interviews were planned. These will be complemented by regular telephone contacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructing case trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer.
DISCUSSION: This study protocol aims to guide research in a field that is difficult to approach, with regard to its topic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will be enhanced, which is of major relevance for future care planning. With investment in additional reflexivity and communication procedures innovative results and robust knowledge are expected outcomes.
BACKGROUND: The need to provide quality end-of-life care is universally accepted. International research and policies encourage innovative ways that effective culturally appropriate care can be provided. Higher education institutions and practice settings are tasked with ensuring that nurse graduates have the knowledge, skills and insight to deliver person-centred end-of-life care.
RESEARCH AIMS AND OBJECTIVES: The aim was to explore student evaluation of end-of-life care learning within a three-year undergraduate adult nursing degree programme. Objectives were to assess student perceptions of the content and level of learning achieved, explore usefulness of learning, highlight areas that were most useful, and identify suggestions to improve learning.
DESIGN: A 3-year quantitative longitudinal design was used. A questionnaire containing open and closed questions was designed to incorporate the personal and professional learning strategies indicated by the Nursing and Midwifery Council (NMC) (2010).
SETTING AND PARTICIPANTS: The evaluation was completed at the same time point over a three-year period from April 2015–April 2017. The participants were year three student nurses, from 3 consecutive years, enrolled on a pre-registration adult nursing course at one university. There was a 66% response rate (n = 336).
METHODS: Participant information sheets and questionnaires were distributed and time to complete them facilitated. Responses from closed questions were coded and analysed using descriptive statistics (SPSS 24) and thematic analysis used for open questions.
RESULTS: Students expressed satisfaction with their learning, 88.7-97% of students reported a positive impact on their knowledge. They developed an understanding of the impact the nurse can have on the patient and family experience, reporting more confidence and competence in most aspects of end-of-life care. They noted improved ability to utilise this in their subsequent practice experience 88.1-97%.
CONCLUSIONS: Structured end-of-life care within the curriculum is essential to equip graduate nurses to provide effective evidence informed care. Planning should continue for curriculum development that encompasses person-centred end-of-life care across cultures.
OBJECTIVE: To provide insight into the prescribing practices of three independent nurse prescribers (INPs)/clinical nurse specialists (CNSs) working in a supportive and palliative care team (SPCT) in a district general hospital and a specialist tertiary cancer centre in the UK.
METHODS: A prospective review of all consultations and the prescribing activity arising from the consultations (and reasons for non-prescribing following a consultation) of 3 INPs/CNSs between 1 August 2018 and 31 October 2018.
RESULTS: Four hundred ninety-three consultations were undertaken on 186 individual patients. Two hundred forty-seven consultations representing 50% resulted in changes to a prescription, and 123 of those consultations representing 50% of prescriptions written resulted in the prescribing of an opioid for moderate-to-severe pain.
CONCLUSIONS: This service evaluation demonstrates the potential for INPs in SPCTs to provide comprehensive symptom control while enabling CNSs to practice with a greater degree of autonomy leading to enhanced job satisfaction. On the basis of our experience, we would encourage all palliative care CNSs to undergo training to become INPs (if available).
CONTEXT: Many patients with advanced cancer experience aggressive care during the end-of-life. Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients.
OBJECTIVES: To evaluate the impact of palliative care on the reduction of aggressive measures at the end-of-life.
METHODS: Longitudinal study that analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality of end-of-life care indicators; i.e., emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life and place of death in hospital as well as the use of a composite score for aggressiveness of care.
RESULTS: Out of the 1,284 patients, 832 (65%) received some aggressive measures in end-of-life care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%, p<0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score =1: 87.4% vs. 52.8%, p <0.001). Early PC was associated with less chemotherapy (p=0.001) and fewer emergency department visits (p=0.004) in the last 30 day of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at end-of-life care aggressiveness.
CONCLUSIONS: Patients with an advanced cancer consultation by PC staff received less aggressive care at the end-of-life when compared to patients without PC.
Dans nos sociétés occidentales le renforcement de la valeur d’autonomie a pris corps à travers différentes dispositions législatives, dont la possibilité de rédiger des directives anticipées. Leur mise en œuvre questionne les professionnels de santé.
Objectif: L'objectif principal de ce travail était de recueillir la perception pluridisciplinaire de soignants, puis, secondairement, de décrire leur pratique d’information et d’aide à la rédaction des directives anticipées.
Méthode: Cette enquête est à visée prospective. Un questionnaire a été remis un jour donné à la promotion 2016/2017 d’un diplôme inter-universitaire en soins palliatifs (DIUSP). Le questionnaire se composait de dix questions fermées, 12 questions ouvertes et un encadré libre.
Résultats: Le sentiment des professionnels de santé était hétérogène, 56,3 % se disaient à l’aise, 44 % d’avis partagé. Plusieurs moments sont cités pour présenter les directives anticipées. Sur la forme, 25 % des répondants pensaient qu’allier un modèle type avec des zones de texte libre permet d’engager un dialogue patient soignant. Les psychologues considéraient que les directives anticipées ne doivent servir qu’à transmettre des informations médicales. Si la plupart des répondants ont délivré des informations sur les directives anticipées, 81,3 % n’ont jamais accompagné de patient pour leur rédaction et 57,1 % n’ont pas eu à les utiliser. Leur valeur opposable est adéquate pour 56,3 % des répondants.
Conclusion: La perception des directives anticipées est favorable, mais leur appropriation par des professionnels de santé sensibilisés à la démarche palliative reste délicate. Des difficultés ressortent telles qu’aborder le sujet de la fin de vie, trouver le temps nécessaire pour échanger avec les personnes qui souhaitent en rédiger.
Background: There is growing interest to integrate palliative care and its structures into the care of neurological patients. However, in Germany there is no comprehensive assessment tool capturing the symptoms of patients with advanced neurological diseases.
Aim: To validate a newly developed palliative care measurement tool based on an extension of the validated core documentation system Hospice and Palliative Care Evaluation considering additional neurological issues (HOPE+).
Design: Prospective, observational study using HOPE+ and as external criteria, the Eastern Cooperative Oncology Group (ECOG) performance status and the 12 months “surprise” question (12-SQ) in a neurological population, and assessment for its construct validity and diagnostic accuracy.
Setting/participants: All newly admitted patients to the Department of Neurorehabilitation, Dr. Becker Rhein-Sieg-Clinic aged 18–100 years (#DRKS00010947).
Results: Data from 263 patients (63 ± 14 years of age) were analyzed. HOPE+ revealed a moderately correlated six-factor structure (r = –0.543–0.525). Correlation analysis to evaluate discriminant validity using ECOG as external criterion was high (rs(261) = 0.724, p < 0.001) and confirmed for severely affected patients by adding the 12-SQ (“No”-group: 48.00 ± 14.92 vs “Yes”-group: 18.67 ± 7.57, p < 0.009). Operating characteristics show satisfactory diagnostic accuracy (area under the curve: 0.746 ± 0.049, 95% confidence interval = 0.650–0.842).
Conclusion: HOPE+ demonstrates promising psychometric properties. It helps to assess palliative care issues of patients in neurological settings and, in combination with the 12-SQ, conceivably conditions when to initiate the palliative care approach in a population underrepresented in palliative care structures so far.