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EVALUATION

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Assessment of patient comfort during palliative sedation - is it always reliable ?

DESCHEPPER, R. ; BILSEN, Johan ; LAUREYS, S.
Springer, 2014, p. 663-675

Thème : Ethique et déontologie. Cote : eD13.07

SEDATION PALLIATIVE ; SOIN CONFORT ; EVALUATION ; POSOLOGIE ; SOUFFRANCE GLOBALE

"When death knocks at the door of our ward, we do not easily open the door", an intensivist once said. In the intensive care unit (ICU) and emergency department, care is strongly focused on cure and resuscitation. Notwithstanding the technological progress made in intensive and emergency medecine, a substantial number of the partients admitted to the ICU cannot be saved.
[Extrait introduction]

Prognostication accuracy, confidence, and decisional conflict across training levels of internal medicine providers

NAMAVAR, Aram A. ; VANGALA, Sitaram ; PIETRAS, Christopher ; DOWLING, Erin P.
JOURNAL OF PALLIATIVE CARE, 12/08/2019, Pagination inconnue

Document en ligne

Thème : Ethique et déontologie.

FORMATION ; CONFIANCE ; CONFLIT VALEUR ; PRISE DECISION ; OUTIL ; EVALUATION

Context: Providing patient care at the end of a patient's life is a humbling and sacred experience for both patient and provider. Without a truthful and meaningful conversation about end-of-life care preferences, the care that is delivered may not be the care that the patient prefers.
bjectives: Determine if there is a relationship between level of training, confidence, and presence of decisional conflict in making an accurate prognosis for 2 standardized cases. Additionally, we evaluated the correctness of the prognosis as measured against survival outcomes for patients with similar diagnoses.
Methods: Decisional conflict was measured with the SURE tool, a validated 4-item tool that has been used in assessing for the presence of decisional conflict.
Results: Following analysis of data, it was found that providers with no decisional conflict were much more likely to be attendings with more than 5 years' experience. Providers were more conflicted overall when confronted with a case with a more grave prognosis. It was determined that providers with a lower level of training were more likely to have decisional conflict.
Conclusions: Provider confidence increases and decisional conflict decreases as one increases their level of training. However, the degree in which the provider is correct in their prognosis does not change as one increases their level of training. These findings have broad implications on patients, providers, and the health-care system.

Origine : SAGE Journals

Developing a measure of end-of-life care nursing knowledge for Japanese geriatric nurses

OKUMURA-HIROSHIGE, Akemi ; FUKAHORI, Hiroki ; YOSHIOKA, Sachiko ; NISHIYAMA, Midori ; TAKAMICHI, Kaori ; KUWATA, Miyoko
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 08/2019, vol.21, n°4, p. E1-E9

Document en ligne

Thème : Formation.

FIN VIE ; INFIRMIERE ; GERIATRIE ; CONNAISSANCE ; JAPON ; SOIN INFIRMIER ; PERSONNE AGEE ; FORMATION PROFESSIONNELLE ; EVALUATION

This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium–Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach a coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale’s items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse’s knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.

Origine : journals.lww.com

Measuring total suffering and will to live in an advanced cancer patient using a patient-centered outcome measure - a follow-up case study

JULIAO, Miguel ; ANTUNES, Bárbara ; NUNES, Baltazar ; SOBRAL, Maria Ana ; CHAVES, Petra ; RUNA, Daniela ; BRUERA, Eduardo
JOURNAL OF PALLIATIVE MEDICINE, 02/08/2019, Pagination inconnue

Document en ligne

Thème : Soins.

EVALUATION ; CANCER ; SOUFFRANCE GLOBALE ; CONCEPT ; ETUDE CAS

Introduction: the concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient.
Case Description: souffrA 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores.
Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.

Origine : PubMed

An observational study on quality of life and preferences to sustain life in locked-in state

KUZMA-KOZAKIEWICZ, Magdalena ; ANDERSEN, Peter M. ; CIECWIERSKA, Katarzyna ; VAZQUEZ, Cynthia ; HELCZYK, Olga ; LOOSE, Markus ; UTTNER, Ingo ; LUDOLPH, Albert C. ; LULE, Dorothée
Neurology, 09/2019, vol.93, n°10, p. 938-945

Document en ligne

Thème : Recherche - Evaluation - Méthodologie. Cote : eD15.00.02

QUALITE VIE ; PREFERENCE ; LOCKED IN SYNDROME ; SCLEROSE LATERALE AMYOTROPHIQUE ; EVALUATION ; ECHELLE MESURE ; QUESTIONNAIRE

OBJECTIVE: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).
METHODS: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.
RESULTS: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.
INTERPRETATION: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.

Origine : PubMed

Does an interactive, teleconference-delivered, palliative care lecture series improve nursing home staff confidence?

DOWLING, Michael J. ; PAYNE, Cathy ; LARKIN, Philip J. ; RYAN, Daniel J.
JOURNAL OF PALLIATIVE MEDICINE, 07/08/2019, Pagination inconnue

Document en ligne

Thème : Formation.

IRLANDE ; FORMATION A DISTANCE ; EVALUATION ; DEMARCHE PALLIATIVE ; CONFIANCE

Background: Project ECHO™ (Extension for Community Healthcare Outcomes) is a form of online interactive teaching, which has gained international traction. This project evaluates the effectiveness of an ECHO-delivered palliative care education program for the South Dublin region of Ireland. Our aim was to measure project success by quantifying gains in staff confidence.
Methods: The educational program consisted of 10 interactive sessions over a five-month period on palliative care topics ranging from pain management to advance care planning. Twenty nursing homes took part in the education program. Of these, a subgroup of six nursing homes were randomly selected for assessment. Likert scale-based questionnaires assessed staff confidence before and after each lecture and assessment was repeated at least six weeks postlecture. Five of the 10 sessions were assessed in this way. Other characteristics such as staff role and years of experience were also collected.
Results: Twenty nursing homes and 353 staff participated in the education sessions. Of the 6 nursing homes chosen for assessment, an average of 42 questionnaires were returned per session (n = 211), representing 83% of attendees at these 6 selected nursing homes. Seventy-seven percent of questionnaires were successfully followed up for six weeks. Average confidence increased by 27% pre- to postlecture (6.4 [SD = 1.4] to 8.1 [SD = 2.1], p < 0.005). Confidence gains persisted at six weeks; 8.1 of 10 (SD = 1.4), with no significant drop-off (-0.01/10, p = 0.95). All staff groups (nursing vs. non-nursing) exhibited equal confidence gains (nursing gain of 27%, non-nursing gain 22%, p = 0.16), and all confidence gains persisted at six weeks.
Conclusion: This interactive, novel, training program significantly improved nursing home staff confidence in managing palliative care situations, and this confidence was sustained at least six weeks after the sessions.

Origine : PubMed

Sleep quality in hospitalized patients with advanced cancer - an observational study using self-reports of sleep and actigraphy

JAKOBSEN, Gunnhild ; ENGSTROM, Morten ; THRONAES, Morten ; LOHRE, Erik Torbjørn ; KAASA, Stein ; FAYERS, Peter M. ; HJERMSTAD, Marianne Jensen ; KLEPSTAD, Pål
Supportive care in cancer, 07/08/2019, p. 1-9

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

SOMMEIL ; HOPITAL ; CANCER ; QUALITE VIE ; EVALUATION ; ETUDE LONGITUDINALE

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.

Origine : PubMed

Associations between sex, age and spiritual well-being scores on the EORTC QLQ-SWB32 for patients receiving palliative care for cancer - a further analysis of data from an international validation study

ROHDE, Gudrun Elin ; YOUNG, Teresa ; WINSTANLEY, Julie ; ARRARAS, Juan I. ; BLACK, Kath ; BOYLE, Fran ; BREDART, Anne ; COSTANTINI, Anna ; GUO, Jingbo ; IRARRAZAVAL, Maria E. ; KOBAYASHI, Kunihiko ; KRUIZINGA, Renske ; NAVARRO, Mariana ; OMIDVARI, Sepideh ; SERPENTINI, Samantha ; SPRY, Nigel ; VAN LAARHOVEN, Hanneke ; YANG, Grace ; VIVAT, Bella
European journal of cancer care, 21/08/2019, p. 1-11

Document en ligne

Thème : Recherche - Evaluation - Méthodologie. Cote : eD15.00.02

DEMARCHE PALLIATIVE ; CANCER ; QUALITE VIE ; PATIENT ; SEXE ; EVALUATION ; AGE VIE ; SPIRITUALITE

OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores.
METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied.
RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self.
CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.

Origine : PubMed

Identification and evaluation of observational measures for the assessment and/or monitoring of level of consciousness in adult palliative care patients - a systematic review for I-CAN-CARE

KROOUPA, Anna-Maria ; VIVAT, Bella ; MCKEEVER, Stephen ; MARCUS, Elena ; SAWYER, Joseph ; STONE, Paddy
PALLIATIVE MEDICINE, 22/08/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

EVALUATION ; DEMARCHE PALLIATIVE ; CONSCIENCE ; OUTIL ; ECHELLE MESURE

BACKGROUND: The use of observational measures to assess palliative care patients' level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings.
AIM: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care.
DESIGN: Systematic review; PROSPERO registration: CRD42017073080.
DATA SOURCES: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures.
RESULTS: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken (n = 21) or established tools mainly developed and validated in non-palliative care settings (n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation–Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties.
CONCLUSION: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.

Origine : PubMed

Person-centred end-of-life curriculum design in adult pre-registration undergraduate nurse education - a three-year longitudinal evaluation study

GOODE, Debbie ; BLACK, Pauline ; LYNCH, Jacinta
Nurse education today, 01/08/2019, vol.82, p. 8-14

Document en ligne

Thème : Formation.

EVALUATION ; ETUDE LONGITUDINALE ; FIN VIE ; ETUDIANT ; SOIN INFIRMIER ; FORMATION INITIALE

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.

Origine : PubMed

A research literature review to determine how bereavement programs are evaluated

WILSON, Donna M. ; ERRASTI-IBARRONDO, Begoña ; RODRÍGUEZ-PRAT, Andrea
OMEGA JOURNAL OF DEATH AND DYING, 20/08/2019, Pagination inconnue

Document en ligne

Thème : Deuil et travail du deuil.

SOUTIEN DEUIL ; EVALUATION

A review of all 44 research reports published between 2000 and 2018 on bereavement program evaluation was undertaken to identify evaluation methods and assess their apparent efficacy. Bereavement program evaluations varied considerably, with multiple data collection methods per study common (61.4%) over single methods (38.6%). Among these evaluation methods, a self-devised questionnaire was most often used (59.1%), followed by qualitative interviewing (36.4%), and the use of 1 or more of 35 data collection instruments such as grief inventories or depression scales (40.9%). Evaluative data were usually only collected once (77.3%), typically around program completion. Formal bereavement program evaluation appears to be ad hoc and sporadic, and potentially unlikely to provide the type and quality of information needed to retain, improve, expand, or abandon programs. Evaluation method developments including evaluation standards are needed to ensure recipients and others benefit as expected from bereavement programs.

Origine : PubMed

Developing a measure of end-of-life care nursing knowledge for Japanese geriatric nurses

OKUMURA-HIROSHIGE, Akemi ; CHIBA, Hiroki ; NISHIYAMA, Midori ; TAKAMICHI, Kaori ; KUWATA, Miyoko
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 08/2019, vol.21, n°4, p. E1-E9

Thème : Recherche - Evaluation - Méthodologie.

JAPON ; GERIATRIE ; INFIRMIERE ; CONNAISSANCE ; ECHELLE MESURE ; EVALUATION ; FIN VIE ; SOIN INFIRMIER

Interpretation and timing of death - the development and initial validation of the interpretation of death (iod) scale and the attitudes toward medical interventions in the timing of death (amitod) scale

FORTUIN, Nienke P. M. ; SCHILDERMAN, Johannes B. A. M. ; VENBRUX, Eric
DEATH STUDIES, 02/07/2019, p. 1-14

Document en ligne

Thème : Mort. Cote : e00.07DEA

MORT ; EVALUATION ; ECHELLE MESURE ; PAYS-BAS ; RELIGION ; REPRESENTATION MORT

Decreasing religious authority and increasing medical interventions at the end-of-life emphasize the importance of the interpretation and timing of death. Therefore, the three-dimensional interpretation of death scale (evaluating religious, rational, and personal interpretation of death) and the three-dimensional attitudes toward medical interventions in the timing of death scale (evaluating euthanasia, life prolongation and nonintervention) were constructed and assessed in a survey among 356 older Dutch adults. Religious interpretation of death was found to be associated with disapproval of euthanasia and approval of nonintervention, rational interpretation of death with approval of euthanasia, and personal interpretation of death with approval of nonintervention.

Origine : Taylor and Francis+NEJM

Development and testing of the Hogan inventory of bereavement short form for children and adolescents

HOGAN, Nancy S. ; SCHMIDT, Lee A. ; SHARP, Katianne M. Howard ; BARRERA, Maru ; COMPAS, Bruce E. ; DAVIES, Betty ; FAIRCLOUGH, Diane L. ; GILMER, Mary Jo ; VANNATTA, Kathryn ; GERHARDT, Cynthia A.
DEATH STUDIES, 05/07/2019, p. 1-9

Document en ligne

Thème : Deuil et travail du deuil.

DEUIL ; ENFANT ; ADOLESCENT ; PERSONNE ENDEUILLEE ; EVALUATION

To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement – Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.

Origine : Taylor and Francis+NEJM

Validation of a palliative care outcome measurement tool supplemented by neurological symptoms (HOPE+) - identification of palliative concerns of neurological patients

DILLEN, Kim ; EBKE, Markus ; KOCH, Andreas ; BECKER, Ingrid ; OSTGATHE, Christoph ; VOLTZ, Raymond ; GOLLA, Heidrun
PALLIATIVE MEDICINE, 08/07/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

OUTIL ; DEMARCHE PALLIATIVE ; SYMPTOME NEUROLOGIQUE ; ETUDE LONGITUDINALE ; EVALUATION ; IDENTIFICATION

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.

Origine : PubMed

A systematic review and quality appraisal of bereavement care practice guidelines

KENT, Katherine ; JESSUP, Belinda ; MARSH, Pauline ; BARNETT, Tony ; BALL, Madeleine
Journal of evaluation in clinical practice, 09/07/2019, Pagination inconnue

Document en ligne

Thème : Deuil et travail du deuil.

DEUIL ; GUIDE ; EVALUATION ; OUTIL

Bereavement care practice guidelines assist in delivering high-quality bereavement care. However, the quality of published guidelines is unknown. A systematic review was conducted to identify and evaluate the quality of the process used to develop bereavement care practice guidelines using the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument. A keyword search was conducted in MEDLINE-Complete, CINAHL-Complete, Health-Source (Nursing/Academic Edition), Psychology and Behavioral Sciences Collection, and an internet search engine in October 2017. Sixteen guidelines with differing scope and purpose but similar core values were identified from the grey literature and then appraised at high quality (n = 1), moderate quality (n = 4), or low quality (n = 11). The domains "clarity of presentation" and "scope and purpose" achieved the highest scores (mean ± SD 71.0 ± 27.6% and 64.4 ± 37.5%, respectively), while "editorial independence" showed the lowest mean score (9.2 ± 13.3%). While few of the bereavement care practice guidelines met the AGREE II quality standards related to their development process, neither the quality of the content of each guideline nor the in-context application was assessed by the AGREE II instrument. Ongoing development of practice guidelines may benefit from consideration and application of the framework outlined in the AGREE II or similar appraisal instrument.

Origine : PubMed

The surprise question and self-rated health are useful screens for frailty and disability in older adults with chronic kidney disease

BADDOUR, Nicolas A. ; ROBINSON-COHEN, Cassianne ; LIPWORTH, Loren ; BIAN, Aihua ; STEWART, Thomas G. ; JHAMB, Manisha ; SIEW, Edward D. ; ABDEL-KADER, Khaled
JOURNAL OF PALLIATIVE MEDICINE, 28/06/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

PERSONNE AGEE ; NEPHROLOGIE ; VULNERABILITE ; OUTIL ; ETUDE COHORTE ; ETUDE LONGITUDINALE ; EVALUATION ; ACTIVITE VIE QUOTIDIENNE

Background: Self-rated health (SRH) and the surprise question (SQ) capture perceptions of health and are independent risk factors for poor outcomes. Little is known about their association with physiologic and functional decline.
Objective: Determine the association of SRH and SQ with frailty and functional status in older adults with chronic kidney disease (CKD) and their utility as screening tools.
Design: Prospective cohort study.
Setting/Subjects: Two hundred seventy-two adults, age =60 years, with advanced CKD seen in nephrology clinic.
Measurements: Patients completed SRH and were evaluated for frailty (Fried criteria and Clinical Frailty Scale [CFS]) and functional status (Katz and Lawton indices of activities of daily living [ADLs] and instrumental ADLs [iADLs]). Providers completed the SQ. Correlations were evaluated using Spearman's rho.
Results: Fifteen percent of patients were frail, 8% had =1 ADL deficit, and 29% had =1 iADL deficit. SRH and SQ were moderately correlated with frailty and iADLs. A SRH of excellent, very good, or good was predictive of nonfrail status (Fried negative predictive value [NPV]: 0.92; CFS NPV: 0.92) and preserved ADL function (NPV for =1 deficit: 0.96). A SQ response of 5, 4, or 3 (i.e., surprised) was predictive of nonfrail status and preserved ADL function (CFS NPV: 0.90; ADL =1 deficit NPV: 0.95). A SQ response of 1 or 2 had a positive predictive value of 0.64 for =1 iADL deficit.
Conclusions: Subjective health measures may be useful screening tools for frailty and functional status.

Origine : PubMed

Spiritual coping and psychological symptoms as the end approaches - a closer look on ambulatory palliative care patients

GRYSCHEK, Guilherme ; MACHADO, Danusa De Almeida ; OTUYAMA, Leonardo Jun ; GOODWIN, Christian ; LIMA, Maria Cristina Pereira
Psychology, health and medicine, 09/07/2019, p. 1-8

Document en ligne

Thème : Psychologie, psychanalyse.

SPIRITUALITE ; COPING ; SYMPTOME ; PSYCHOLOGIE ; DEPRESSION ; HOSPITALISATION JOUR ; DEMARCHE PALLIATIVE ; ECHELLE MESURE ; EVALUATION ; PATIENT ; DETRESSE PSYCHOLOGIQUE ; ANXIETE

Palliative care providers must seek to improve quality of life despite their patients' life-threating diseases, based on the concept of total pain, which includes physical, psychological and spiritual pain. Understanding the relationship between spiritual coping and psychological symptoms (especially depressive symptoms) could help healthcare teams better address patients' needs. Across-sectional survey with aconvenient sample of ambulatory palliative care patients investigated their psychological pain through the Hospital Anxiety and Depressive (HAD) scale and their use of spirituality using the Brief Religious/spiritual coping (BriefRCOPE) scale. Alinear regression model, using the HADS-depression as outcome variable and the BriefRCOPE as the independent variable, adjusting for confounding variables, investigated the possible association between these variables. Due to methodological limitations, just 40 out 130 potential participants were assessed, with 40percent showing depressive symptoms. In regression model, depressive and anxiety symptoms were significantly associated with each other (p = 0.037 and 0.015, respectively) and negative religious/spiritual coping was associated with depressive symptoms (p = 0.033). This study found asignificant relationship between psychological pain and negative spiritual coping mechanisms. Palliative care professionals should be trained to address patients' total pain and spiritual needs, supporting their ability to cope with their suffering.

Origine : PubMed

Measuring quality of life in palliative care for Parkinson's disease - a clinimetric comparison

HOLDEN, Samantha K. ; KOLJACK, Claire E. ; PRIZER, Lindsay P. ; SILLAU, Stefan H. ; MIYASAKI, Janis M. ; KLUGER, Benzi M.
Parkinsonism and related disorders, 23/06/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

QUALITE VIE ; DEMARCHE PALLIATIVE ; MALADIE PARKINSON ; ECHELLE MESURE ; EVALUATION

INTRODUCTION: Quality of life (QOL) assessments allow for more complete evaluation of patients' lived experiences in relation to chronic conditions, such as Parkinson's disease (PD). In palliative care, such instruments are vital to ensure QOL issues are catalogued and addressed for patients. However, little is known regarding the psychometric properties of quality of life scales for use in palliative care for PD, specifically.
METHODS: 210 participants with parkinsonian disorders, who participated in a larger palliative intervention clinical trial, completed four quality of life scales (PDQ-39, PROMIS-29, QOL-AD, and McGill QOL) at baseline and post-intervention. Psychometric properties, including internal consistency and concurrent validity, were examined. Factor analyses were performed to evaluate relationships between scale items. Minimal clinically important differences (MCID) and responsiveness were calculated for each scale.
RESULTS: All scales demonstrated good internal consistency and concurrent validity. Factor analyses revealed few deviations from the defined subdomains of the scales. Mean absolute MCID values were estimated at 12.7, 10.9, 3.9, and 18.9 for PDQ-39, PROMIS-29, QOL-AD, and McGill QOL, respectively. The PDQ-39 and PROMIS-29 demonstrated higher responsiveness to palliative intervention, while the QOL-AD was more responsive in the control group.
CONCLUSIONS: The PDQ-39, PROMIS-29, QOL-AD, and McGill QOL are all valid for use in PD palliative care, though subdomains of the scales in this population may differ slightly from those initially defined. We recommend the use of PDQ-39 and PROMIS-29 as outcome measures in clinical trials for palliative care in PD, though the QOL-AD may be superior for tracking disease progression.

Origine : PubMed

Transcultural validation of the French version of the modified Edmonton symptom assessment scale - the ESAS12-F

TRICOU, Colombe ; RUER, Murielle ; NEKOLAICHUK, Cheryl ; SIGURDARDOTTIR, Katrin ; PERCEAU-CHAMBARD, Elise ; BRUERA, Eduardo ; FILBET, Marilene
JOURNAL OF PALLIATIVE MEDICINE, 09/07/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

CANCER ; EVALUATION ; SYMPTOME ; ECHELLE MESURE ; FRANCE

Background: Cancer-related physical symptoms can decrease patients' overall quality of life and are often underdiagnosed. The Edmonton Symptom Assessment Scale (ESAS) is widely used in palliative care for cancer patients to easily assess cancer patients' symptoms. It has been often modified, adding symptoms and explanations, and translated into many languages. The European Association of Palliative Care research team developed a database, which included the modified 12-item ESAS-r as the symptom assessment tool.
Objectives: The purpose of this study was to achieve the translation and cross-cultural validation in French of the 12-item ESAS-r, the ESAS12-F.
Design: A French version of the ESAS-r was developed using a standardized forward and backward translation method. Patients completed the ESAS12-F and provided feedback on the translation.
Setting/Subjects: Forty-five patients with advanced cancer, followed by the palliative care team from the Lyon Sud University Hospital in France, were recruited.
Results: Eighty-nine percent of patients considered the ESAS easy to understand. They highlighted some concerns more about the tool itself than the translation: the time line "now," the difficulty to quantify a symptom in a numerical evaluation. Some items (sleep and appetite) needed to be reread and for some others (digestive and psychological symptoms, and well-being) to be reordered in the questionnaire.
Conclusion: The ESAS12-F is well accepted and easy to use for the cancer patients. The next step is to carry out a psychometric validation of the definitive version of the ESAS12-F.

Origine : PubMed

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