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Inventory of complicated spiritual grief 2.0 (ICSG 2.0) - validation of a revised measure of spiritual distress in bereavement

BURKE, Laurie A. ; CRUNK, A. Elizabeth ; NEIMEYER, Robert A. ; BAI, Haiyan
DEATH STUDIES, 19/06/2019, p. 1-17

Document en ligne

Thème : Deuil et travail du deuil.

SPIRITUALITE ; DEUIL COMPLIQUE ; PERSONNE ENDEUILLEE ; EVALUATION ; CATHOLICISME ; ETUDE COHORTE ; ECHELLE MESURE

Spirituality has long served as a source of solace for many grievers following a loss. For other mourners, whose bereavement experience has been significantly challenged by struggles in their relationship with God and/or their faith community, the opposite is true. Complicated spiritual grief (CSG) is a spiritual crisis following the loss of a loved one. To assess CSG in samples of bereaved adults, a simple-to-use, multidimensional measure of spiritual crisis following loss called the Inventory of Complicated Spiritual Grief (ICSG) was previously developed and validated. However, subsequent research providing greater clarity about the construct of CSG supported the need to revise and update the ICSG. The goal of the present study was to establish the psychometric validity of a revised measure of CSG, called the Inventory of Complicated Spiritual Grief 2.0 (ICSG 2.0), with a large, diverse cohort of bereaved Christian adults (N = 440). Analyses of the bifurcated sample supported a three-factor model measuring insecurity with God, estrangement from the spiritual community, and disruption in religious practices. Further analyses supported the convergent and incremental validity of a 28-item scale relative to other theoretically similar instruments and measures of poor bereavement outcome, indicating the instrument’s research and clinical usefulness.

Origine : Taylor and Francis+NEJM

Palliative care referral and associated outcomes among patients with cancer in the last 2 weeks of life

LEDOUX, Mathilde ; RHONDALI, Wadih ; LAFUMAS, Véronique ; BERTHILLER, Julien ; TEISSERE, Marion ; PIEGAY, Céline ; COURAY-TARGE, Sandrine ; SCHOTT, Anne-Marie ; BRUERA, Eduardo ; FILBET, Marilène
BMJ supportive and palliative care, 03/2019, vol.9, n°1, Pagination inconnue

Document en ligne

Thème : Soins.

DEMARCHE PALLIATIVE ; QUALITE VIE ; CANCER ; MORT ; ETUDE RETROSPECTIVE ; SOINS SUPPORT ; CONSULTATION ; SOIN INFIRMIER ; EVALUATION ; PRISE EN CHARGE ; SYMPTOME

Background: Palliative care (PC) improves the quality of life of patients with advanced cancer. Our aim was to describe PC referral among patients with advanced cancer, and associated outcomes in an academic medical centre.
Methods: We reviewed the medical records of 536 inpatients with cancer who had died in 2010. Our retrospective study compared patients who accessed PC services with those who did not. Statistical analysis was conducted using non-parametric tests due to non-normal distribution. We also conducted a multivariate analysis using a logistic regression model including age, gender, type of cancer and metastatic status.
Results: Out of 536 patients, 239 (45%) had PC referral. The most common cancer types were respiratory (22%) and gastrointestinal (19%). Patients with breast cancer (OR 23.76; CI 6.12 to 92.18) and gynaecological cancer (OR 7.64; CI 2.61 to 22.35) had greater PC access than patients with respiratory or haematological cancer. Patients referred to PC had significantly less chemotherapy in the last 2 weeks of life than non-referred patients, with 22 patients (9%) vs 59 (19%; p<0.001). PC-referred patients had significantly fewer admissions to intensive care units in the last month of life than non-referred patients, with 14 (6%) vs 58 (20%; p<0.001).
Conclusions: There was a large variation in access to PC according to the type of cancer. There is a need to improve collaboration between the PC service and the respiratory, cancer and haematology specialists. Further research will be required to determine the modality and the impact of this collaboration.

Origine : PubMed

Developing educational modules to enhance care of aged and dying inmates - set-up phase

KITT-LEWIS, Erin ; LOEB, Susan J. ; MYERS, Valerie H. ; WION, Rachel K. ; BANEY, Brenda ; STRICKFADEN, Sophia
Public health nursing, 01/01/2019, vol.36, n°3, p. 401-410

Document en ligne

Thème : Formation.

PRISON ; SOIN ; PROGRAMME ENSEIGNEMENT ; FORMATION ; PERSONNEL SANTE ; INFORMATIQUE ; PRATIQUE PROFESSIONNELLE ; EVALUATION

The purpose of this article is to explain the strategies used in the "Set-up" phase of developing computer-based education on the care and management of incarcerated people who are older and/or dying. Public health nurses have an opportunity to support efforts in educating corrections staff to enhance health care for older and dying inmates. Such endeavors can promote social justice through inmates receiving evidence-based care that parallels that received by the community at large. "Set-up" is the first of four phases in the Institute for Healthcare Improvement's Framework for Going to Full Scale. Our design approach was threefold and included an environmental scan, a modified Delphi survey, and a usability study. An expert advisory board was consulted throughout the Set-up Phase. Participants for the Delphi Survey had expertise in geriatrics and corrections health care. Usability testing was conducted at two State Correctional Institutions. The Delphi Survey consisted of three Qualtrics surveys. Usability testing examined navigability; detected problems; observed time spent solving problems; identified problem severity; and developed recovery strategies. The Set-up established proof of concept, three prototype modules, and a specifications document to guide future programming. In addition, a Technology Niche Analyses® provided a preliminary commercialization plan (NIH, 2017). The Set-up phase has been instrumental in exposing the available infrastructure for dissemination of an educational product within corrections and may be a first step in addressing public health concerns on issues in aging. Commercial feasibility of the program and the need for continued research for Developing the Scalable Unit were established.

Origine : PubMed

End-of-life measures in Huntington disease - HDQLIFE meaning and purpose, concern with death and dying, and end of life planning

CARLOZZI, Noelle E. ; BOILEAU, Nicholas R. ; PAULSEN, Jane S. ; PERLMUTTER, Joel S. ; LAI, Jin-Shei ; HAHN, Elizabeth A. ; MCCORMACK, Michael K. ; NANCE, Martha A. ; CELLA, David ; BARTON, Stacey K. ; DOWNING, Nancy R.
Journal of neurology, 12/06/2019, p. 1-17

Document en ligne

Thème : Médecine.

FIN VIE ; MALADIE NEUROLOGIQUE ; PRISE EN CHARGE ; ECHELLE MESURE ; EVALUATION ; SOIN ; PLANIFICATION

BACKGROUND AND PURPOSE: Huntington disease (HD) is a progressive neurodegenerative disorder. There are no HD-specific measures to assess for end-of-life (EOL) preferences that have been validated for clinical use. The purpose of this study is to demonstrate reliability and validity of three HD-specific EOL measures for use in and clinical research settings.
METHODS: We examined internal reliability, test-retest reliability, floor and ceiling effects, convergent and discriminant validity, known groups' validity, measurement error, and change over time to systematically examine reliability and validity of the HDQLIFE EOL measures.
RESULTS: Internal consistency and test-retest reliability were >0.70. The measures were generally free of floor and ceiling effects and measurement error was minimal. Convergent and discriminant validity were consistent with well-known constructs in the field. Hypotheses for known groups validity were partially supported (there were generally group differences for the EOL planning measures, but not for meaning and purpose or concern with death and dying). Measurement error was acceptable and there were minimal changes over time across the EOL measures.
CONCLUSIONS: Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.

Origine : PubMed

A brief, patient- and proxy-reported outcome measure in advanced illness - validity, reliability and responsiveness of the integrated palliative care outcome scale (IPOS)

MURTAGH, Fliss Em ; RAMSENTHALER, Christina ; FIRTH, Alice ; GROENEVELD, Esther I. ; LOVELL, Natasha ; SIMON, Steffen T. ; DENZEL, Johannes ; GUO, Ping ; BERNHARDT, Florian ; SCHILDMANN, Eva ; VAN OORSCHOT, Birgitt ; HODIAMONT, Farina ; STREITWIESER, Sabine ; HIGGINSON, Irene J. ; BAUSEWEIN, Claudia
PALLIATIVE MEDICINE, 12/06/2019, p. 1-13

Document en ligne

Thème : Recherche - Evaluation - Méthodologie. Cote : e00.07PAL

EVALUATION ; MALADIE GRAVE ; ECHELLE MESURE ; ROYAUME UNI ; ALLEMAGNE ; DEMARCHE PALLIATIVE

Background: Few measures capture the complex symptoms and concerns of those receiving palliative care.
Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.
Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).
Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany
Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (a = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good.
Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

Origine : PubMed

Which outcome domains are important in palliative care and when? - an international expert consensus workshop, using the nominal group technique

DE WOLF-LINDER, Susanne ; DAWKINS, Marsha ; WICKS, Francesca ; PASK, Sophie ; EAGAR, Kathy ; EVANS, Catherine J. ; HIGGINSON, Irene J. ; MURTAGH, Fliss E. M.
PALLIATIVE MEDICINE, 12/06/2019, p. 1-11

Document en ligne

Thème : Recherche - Evaluation - Méthodologie. Cote : e00.07PAL

DEMARCHE PALLIATIVE ; QUALITE SOIN ; EVALUATION ; INDICATEUR SANTE ; DOULEUR ; BESOIN FONDAMENTAL ; PREFERENCE

Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.
Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.
Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1–5, lowest to highest priority) of domains. Participants’ rationales for their choices were analysed thematically.
Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.
Results: Participants’ years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were ‘overall wellbeing/quality of life’ (2.75), ‘pain’ (2.06), and ‘information needs/preferences’ (2.06), respectively. The palliative measure ‘Phase of Illness’ was recommended as the preferred measure of time period over which the domains were measured.
Conclusion: The domains of ‘overall wellbeing/quality of life’, ‘pain’, and ‘information needs/preferences’ are recommended for regular measurement, assessed using ‘Phase of Illness’. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.

Origine : PubMed

Barriers and facilitators to implementing the carer support needs assessment tool in a community palliative care setting

HORSEMAN, Zoe ; MILTON, Libby ; FINUCANE, Anne
British journal of community nursing, 02/06/2019, vol.24, n°6, p. 284-290

Document en ligne

Thème : Soins.

PRISE EN CHARGE ; EVALUATION ; BESOIN SANTE ; FAMILLE ; RELATION PERSONNEL SOIGNANT FAMILLE ; AIDANT NATUREL ; ROLE

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.

Origine : PubMed

Consensus building on health indicators to assess PC global development with an international group of experts

ARIAS-CASAIS, Natalia ; GARRALDA, Eduardo ; LOPEZ-FIDALGO, Jesús ; RHEE, John Y. ; PONS, Juan José ; DE LIMA, Liliana ; CENTENO, Carlos
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 01/06/2019, Pagination inconnue

Document en ligne

Thème : Santé.

INDICATEUR SANTE ; EVALUATION ; POLITIQUE SANITAIRE ; SANTE PUBLIQUE

CONTEXT: International consensus on indicators is necessary to standardize the global assessment of palliative care (PC) development.
OBJECTIVES: To identify the best indicators to assess current national-level PC development.
METHODS: Experts in PC development were invited to rate 45 indicators organized by domains of the WHO Public Health Strategy in a two-round RAND/UCLA modified Delphi process. In the first round, experts rated indicators by relevance, measurability, and feasibility (1-9). Ratings were used to calculate a Global-Score (1-9). Indicators scoring >7 proceeded to the second round for fine-tuning of Global-Scores. Median, Confidence Interval (CI), Content Validity Index (I-CVI), and Disagreement Index were calculated. Indicators scoring a lower limit 95% CI 7 and an I-CVI 0·30 were selected.
RESULTS: Twenty-four experts representing five continents and several organizations, completed the study. Twenty-five indicators showed a high content validity and level of agreement. Policy indicators (n=8) included the existence of designated staff in the national Ministry of Health, the inclusion of PC services in the basic health package and in the primary care level list of services. Education indicators (n=4) focused on processes of official specialization for physicians, inclusion of teaching at the undergraduate level, and PC professorship. Use of medicines indicators (n=4) consisted of opioid consumption, availability and prescription requirements. Services indicators (n=6) included number and type of services for adults and children. Additional indicators for professional activity (n=3) were identified.
CONCLUSION: The first list including 25 of the best indicators to evaluate PC development at a national-level has been identified.

Origine : PubMed

An evaluation of the cost-effectiveness of the different palliative care models available to cancer patients in Turkey

SAYGILI, Meltem ; CELIK, Yusuf
European journal of cancer care, 04/06/2019, Pagination inconnue

Document en ligne

Thème : Santé.

EVALUATION ; COUT ; DEMARCHE PALLIATIVE ; MODELE ; CANCER ; TURQUIE

BACKGROUND: Three different models are commonly used to provide palliative care services to cancer patients in Turkey: comprehensive palliative care center (CPCC), hospital inpatient services (HIS) and home healthcare (HHC).
OBJECTIVES: The purpose of this study was to evaluate the cost-effectiveness of three alternative palliative care models for cancer patients.
METHODS: The study included a total of 160 patients diagnosed with cancer (CPCC:60, HIS:59, HHC:41). The patients' quality of life and their levels of satisfaction were used as the indicators of effectiveness, while direct and indirect costs incurred by service providers, patients and relatives were considered in estimating the costs of alternative models. The cost and effectiveness of the alternatives compared the "patient perspective" and "societal perspective" separately.
RESULTS: From a societal perspective, palliative care services provided the HIS model was found to be more cost-effective than the CPCC model. From a patient perspective, HHC was found to be more cost-effective compared to the other two models.
CONCLUSIONS: This study has the potential to provide substantial evidence to health managers and decision-makers with respect to health planning and the formulation of social security policies in Turkey.

Origine : PubMed

The relevance of geriatric assessment for older patients receiving palliative chemotherapy

VAN DER VLIES, E. ; KURK, S. A. ; ROODHART, J. M. L. ; GERRITSE, F. L. ; PELGRIM, T. C. ; VOS, J. M. ; SOHNE, M. ; HUNTING, C. B. ; NOORDZIJ, P. G. ; VAN DER VELDEN, A. M. T. ; LOS, M.
Journal of geriatric oncology, 31/05/2019, Pagination inconnue

Document en ligne

Thème : Médecine.

EVALUATION ; GERIATRIE ; PERSONNE AGEE ; CHIMIOTHERAPIE ; ETUDE LONGITUDINALE ; VULNERABILITE ; EFFET SECONDAIRE

Objectives: No tools accurately discriminate between older patients who are fit and those who are frail to tolerate systemic palliative treatment. This study evaluates whether domains of geriatric assessment (GA) are associated with increased risk of chemotherapy intolerance in patients who were considered fit to start palliative chemotherapy after clinical evaluation by their treating clinician.
Materials and Methods: This prospective multicenter study included patients =70 years who started first line palliative systemic treatment. Before treatment initiation, patients completed GA including Activities of Daily Life (ADL), Instrumental Activities of Daily Life (IADL), Mini-Mental State Examination (MMSE), Mini Nutritional Assessment (MNA), Geriatric Depression Scale (GDS-15) and the Timed Up and Go Test (TUGT). Primary endpoint was treatment modification, defined as inability to complete the first three sessions of systemic treatment as planned. Secondary endpoint was treatment related toxicity = grade 3 (CTCAE Version 4). The association between GA and endpoints were assessed using univariable and multivariable logistic regression analysis.
Results: Ninety-nine patients with median age of 77 (+/- 8) years underwent GA. 48% of the patients required treatment modification and grade 3 toxicity occurred in 53% of patients. One or more geriatric impairments were present in 71% of patients and 32% of patients were frail in two or more domains. Only TUGT was associated with treatment modifications (OR 2.9 [95% CI 1.3–6.5]) and grade 3 toxicities (OR 2.8 [95% CI 1.2–6.3]).
Conclusion: Frailty was common in older patients who were considered fit to receive palliative chemotherapy. Treatment modification was necessary in half of the patients. Only TUGT was significantly associated with treatment modifications and grade 3 chemotherapy toxicities.

Origine : PubMed

A prospective observational study of prevalence and outcomes of patients with gold standard framework criteria in a tertiary regional australian hospital

MILNES, Sharyn ; ORFORD, Neil R. ; BERKELEY, Laura ; LAMBERT, Nigel ; SIMPSON, Nicholas ; ELDERKIN, Tania ; CORKE, Charlie ; BAILEY, Michael
BMJ supportive and palliative care, 03/2019, vol.9, n°1, p. 92-99

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

CANCER ; ECHELLE MESURE ; ETUDE LONGITUDINALE ; RECOMMANDATION ; EVALUATION ; SOIN ; MORTALITE ; PREVALENCE ; AUSTRALIE ; BESOIN SANTE

OBJECTIVES: Report the use of an objective tool, UK Gold Standards Framework (GSF) criteria, to describe the prevalence, recognition and outcomes of patients with palliative care needs in an Australian acute health setting. The rationale for this is to enable hospital doctors to identify patients who should have a patient-centred discussion about goals of care in hospital.
DESIGN: Prospective, observational, cohort study.
PARTICIPANTS: Adult in-patients during two separate 24h periods.
MAIN OUTCOME MEASURES: Prevalence of in-patients with GSF criteria, documentation of treatment limitations, hospital and 1 year survival, admission and discharge destination and multivariate regression analysis of factors associated with the presence of hospital treatment limitations and 1 year survival.
RESULTS: Of 626 in-patients reviewed, 171 (27.3%) had at least one GSF criterion, with documentation of a treatment limitation discussion in 60 (30.5%) of those patients who had GSF criteria. Hospital mortality was 9.9%, 1 year mortality 50.3% and 3-year mortality 70.2% in patients with GSF criteria. One-year mortality was highest in patients with GSF cancer (73%), renal failure (67%) and heart failure (60%) criteria. Multivariate analysis revealed age, hospital length of stay and presence of the GSF chronic obstructive pulmonary disease criteria were independently associated with the likelihood of an in-hospital treatment limitation. Non-survivors at 3 years were more likely to have a GSF cancer (25% vs 6%, p=0.004), neurological (10% vs 3%, p=0.04), or frailty (45% vs 3%, p=0.04) criteria. After multivariate logistic regression GSF cancer criteria, renal failure criteria and the presence of two or more GSF clinical criteria were independently associated with increased risk of death at 3 years. Patients returning home to live reduced from 69% (preadmission) to 27% after discharge.
CONCLUSIONS: The use of an objective clinical tool identifies a high prevalence of patients with palliative care needs in the acute tertiary Australian hospital setting, with a high 1 year mortality and poor return to independence in this population. The low rate of documentation of discussions about treatment limitations in this population suggests palliative care needs are not recognised and discussed in the majority of patients.
TRIAL REGISTRATION NUMBER: 11/121.

Origine : PubMed

Psychometric properties of end-of-life caregiving experience appraisal scale - Iranian critical care nurses

SHARIF NIA, Hamid ; GOUDARZIAN, Amir H. ; SHAHROKHI, Akram ; BOYLE, Christopher ; WILSON, Michael Sj ; HOSSEINIGOLAFSHANI, S. Zahra
Nursing in critical care, 02/05/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

ECHELLE MESURE ; IRAN ; FIN VIE ; OUTIL ; EVALUATION ; INFIRMIERE ; SOIN INFIRMIER

BACKGROUND: Health care providers should be able to provide good quality end-of-life care. A tool to evaluate the positive and negative consequences of caring for dying patients is warranted.
AIM: The aim of this study was to evaluate the psychometric properties of the Persian version of the End-of-Life Caregiving Experience Appraisal Scale (EOLCAS).
METHODS: This research was conducted in two phases. Phase I: The World Health Organization Protocol of forward-backward translation and an expert panel in order to determine face and content validity. Phase II: Survey development with 310 nurses who worked in critical care units, construct validity (construct, convergent and divergent validity), internal consistency (average inter-item correlation, Cronbach's alpha and McDonald's omega) and construct reliability were evaluated.
RESULTS: The exploratory factor analysis showed that the present scale (Persian version) has four factors: Negative physical-emotional and social consequences, transcendental communication, information deficits and future rumination, which explained 83·92% of the overall extracted variance. Convergent and divergent validity were confirmed for all factors. The internal consistency and construct reliability were acceptable.
CONCLUSION: The scale has a multidimensional concept that is sufficiently reliable and the use of the scale would be helpful in measuring consequences of caring for dying patients.
RELEVANCE TO CLINICAL PRACTICE: This scale makes a significant contribution in that it helps in the recognition of positive and negative consequences of critical care nurses' caring for dying patients.

Origine : PubMed

Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

OH, Juyeon ; KIM, Seung Hyun ; KIM, Jung A.
Palliative and supportive care, 20/05/2019, p. 1-5

Document en ligne

Thème : Médecine.

BESOIN FONDAMENTAL ; QUALITE VIE ; SCLEROSE LATERALE AMYOTROPHIQUE ; REPUBLIQUE DE COREE ; EVALUATION ; ECHELLE MESURE

OBJECTIVE: The aims of this study were to identify the unmet care needs and to examine the mediating effect of unmet supportive care needs in the relationship between functional status and quality of life (QOL) in Korean patients with amyotrophic lateral sclerosis (ALS).
METHOD: This was a cross-sectional study conducted among 186 patients with ALS recruited from a tertiary hospital in Seoul, South Korea. ALS patients' functional status, unmet supportive care needs, and QOL were assessed by Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, the Amyotrophic Lateral Sclerosis Supportive Care Needs Instrument, and the Amyotrophic Lateral Sclerosis Specific Quality of Life - Revised Instrument, respectively. Mediation analysis was tested using Baron and Kenny's regression analysis and a Sobel test.
RESULT: The mean score for functional status was 33.35 ± 8.89; for unmet supportive care needs it was 2.40 ± 0.66; and for QOL it was 4.95 ± 1.29. Functional status was significantly correlated with unmet care needs and QOL. Unmet care needs satisfaction demonstrated a complete mediating effect on the relationship between functional status and QOL of the patients with ALS (ß = –0.53, p < 0.001) and the effect was significant (Sobel test; Z = 5.48, p < 0.001).
SIGNIFICANCE OF RESULTS: Although QOL was negatively affected by the functional status in our sample, the relationship was fully mediated via unmet supportive care needs. Because there is no cure for ALS, and the condition is rapidly progressive with a lethal outcome, providing care by meeting patients’ needs is a critical aspect of caring for these patients. Early assessment of supportive care needs, providing services, and referring ALS patients to appropriate resources could enhance their QOL.

Origine : PubMed

Nursing outcomes for pain assessment of patients undergoing palliative care

MELLO, Bruna Schroeder ; ALMEIDA, Miriam de Abreu ; PRUINELLI, Lisiane ; LUCENA, Amália de Fátima
Revista brasileira de enfermagem, 02/2019, vol.72, n°1, p. 64-72

Document en ligne

Thème : Recherche - Evaluation - Méthodologie. Cote : eD15.00.02.01

DEMARCHE PALLIATIVE ; SOIN INFIRMIER ; CANCER ; EVALUATION ; DOULEUR ; CONTROLE DOULEUR ; QUALITE SOIN

OBJECTIVE: To select outcomes and indicators of the Nursing Outcomes Classification (NOC), in order to assess patients with cancer under palliative care with Acute and Chronic Pain Nursing Diagnoses; and to construct the conceptual and operational definitions of the indicators.
METHOD: Expert opinion study and literature review. The sample consisted of 13 experts. The data collection was in own tool applied in face-to-face meeting and by e-mail. In the analysis of the data, it was considered between 75% and 100% of agreement.
RESULTS: Eight outcomes and 19 indicators were selected. The results with higher scores were Pain Level, Pain Control and Client Satisfaction: Pain Management. For all indicators selected, conceptual and operational definitions were constructed.
CONCLUSION: The selection of results and priority indicators for the assessment of pain in palliative care, as well as the construction of its definitions, will support clinical practice.

Origine : PubMed

Effectiveness of a short-term psychotherapeutic group for doctors and nurses in a hospice in Southern Europe

FLORIANA, Caccamo ; LUCA, Caldironi ; SIMONA, Ghedin
PROGRESS IN PALLIATIVE CARE, 05/05/2019, p. 1-6

Document en ligne

Thème : Psychologie, psychanalyse.

UNITE SOINS PALLIATIFS ; EUROPE ; MEDECIN ; INFIRMIERE ; SOUTIEN PSYCHOLOGIQUE ; EVALUATION ; EPUISEMENT PROFESSIONNEL

Healthcare professionals are often confronted with situations that increase their levels of stress and emotional fatigue, particularly in hospice or palliative care, because of direct contact with dying patients that can contribute to risk of burnout. Psychological support for doctors and nurses is crucial to voice any anxiety or distress experienced.This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo.Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.

Origine : Taylor and Francis+NEJM

Feasibility of e-pain reporter - a digital pain management tool for informal caregivers in home hospice

MAYAHARA, Masako ; WILBUR, JoEllen ; FOGG, Louis ; BREITENSTEIN, Susan M. ; MILLER, Arlene Michaels
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 06/2019, vol.21, n°3, p. 193-199

Thème : Recherche - Evaluation - Méthodologie.

AIDANT NATUREL ; OUTIL ; DOULEUR ; CONTROLE DOULEUR ; HOSPITALISATION DOMICILE SOINS PALLIATIFS ; QUESTIONNAIRE ; ECHELLE MESURE ; EVALUATION

Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver’s barriers to pain management and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-item Caregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.

Assessing palliative care knowledge among nurses in 2 hospitals in Saudi Arabia

ABOSHAIQAH, Ahmad E.
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 06/2019, vol.21, n°6, p. E1–E6

Thème : Soins.

CONNAISSANCE ; DEMARCHE PALLIATIVE ; INFIRMIERE ; ARABIE SAOUDITE ; FACTEUR ; EVALUATION

The aims of this study were to assess the palliative care knowledge among nurses in Saudi Arabia and to identify the demographic factors influencing such knowledge. A convenience sample of 365 nurses working in 2 hospitals in Saudi Arabia was surveyed using the Palliative Care Quiz for Nursing in this cross-sectional study. The mean score of the respondents in the Palliative Care Quiz for Nursing was 8.88 (SD, 1.75), which is interpreted as low knowledge. In terms of the theoretical categories of the scale, 9 of the 13 items in the category pain and symptom management were answered correctly by the majority of the respondents, whereas all the items in the psychosocial and spiritual care category were answered incorrectly by the majority of the respondents. Type of hospital, age, and attendance to palliative care education in the last 6 months were revealed as significant factors that influence the nurses’ palliative care knowledge. Continuing education on palliative care should be implemented by hospital administrations, and palliative care education should target the weakness of the nurses, especially those revealed in the study, such as on the psychosocial and spiritual care, some aspects of pain and symptom management, and philosophy and principles of palliative care.

A formative evaluation of patient and family caregiver perspectives on early palliative care in COPD across disease severity

IYER, Anand S. ; DIONNE-ODOM, J. Nicholas ; FORD, Stephanie M. ; CRUMP TIMS, Sheri L. ; SOCKWELL, Elizabeth D. ; IVANKOVA, Nataliya V. ; BROWN, Cynthia J. ; TUCKER, Rodney O. ; DRANSFIELD, Mark T. ; BAKITAS, Marie A.
Annals of the American Thoracic Society, 30/04/2019, Pagination inconnue

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Thème : Soins.

MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; DEMARCHE PALLIATIVE ; BESOIN ; BESOIN FONDAMENTAL ; FAMILLE ; CONTROLE SYMPTOME ; EVALUATION

RATIONALE: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).
OBJECTIVES: To identify patient and family caregiver early palliative care needs across stages of COPD severity.
METHODS: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation study of patients with moderate to very severe COPD (FEV1/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life (QOL), anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages.
RESULTS: Patients (n=10) were a mean (±SD) age of 60.4±7.5 years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n=10) were a mean age of 58.3±8.7 years, 40% African American, and 10% male. Overall, 30% (n=6) of participants had poor QOL, 45% (n=9) had moderate-severe anxiety symptoms, 25% (n=5) had moderate-severe depressive symptoms, and 40% (n=8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared to those with moderate-severe COPD.
CONCLUSIONS: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage disease. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.

Origine : PubMed

Symptom assessment in patients with advanced cancer - are the most severe symptoms the most bothersome?

LI, Brian ; MAH, Kenneth ; SWAMI, Nadia ; POPE, Ashley ; HANNON, Breffni ; LO, Christopher ; RODIN, Gary ; LE, Lisa W. ; ZIMMERMANN, Camilla
JOURNAL OF PALLIATIVE MEDICINE, 07/05/2019, p. 1-8

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Thème : Médecine. Cote : e00.07JOU

CANCER ; SYMPTOME ; EVALUATION

Objective: We investigated correspondence between symptom severity and symptom bothersomeness in patients with advanced cancer.
Background: Symptom severity is commonly assessed in clinical cancer settings, but bothersomeness of these symptoms is less often measured.
Methods: Participants with advanced cancer enrolled in a cluster-randomized trial of early palliative care completed the Edmonton Symptom Assessment System (ESAS) and the quality of life at the end of life (QUAL-E) measure as part of their baseline assessment. For each symptom, we examined the correspondence between the symptom being indicated as most severe on the ESAS and rated as most bothersome on the QUAL-E.
Results: For the 386 patients who completed relevant sections of the ESAS and QUAL-E, tiredness (32.8%), sleep (23.8%), and appetite (20.2%) were most frequently rated as most severe, whereas pain (28.9%) and tiredness (24.3%) were most frequently indicated as most bothersome. The most bothersome and most severe symptom corresponded in 42%. Pain and/or tiredness were consistently among the top three most bothersome symptoms, whereas appetite was frequently rated the most severe symptom but was rarely perceived as the most bothersome. The probability that patients rating a symptom as most severe would also rate it as most bothersome was highest for pain (66%), nausea (58%), and tiredness (40%).
Discussion: ESAS symptom severity does not necessarily indicate patients' most bothersome symptom; regardless of severity, pain and tiredness are most frequently perceived as most bothersome. Further research should investigate the clinical benefits of patients also indicating their three most bothersome ESAS symptoms.

Origine : PubMed

How intensive care nurses perceive good death

CEYHAN, Ozlem ; OZEN, Betul ; ZINCIR, Handan ; SIMSEK, Nuray ; BASARAN, Meral
DEATH STUDIES, 12/2018, vol.42, n°10, p. 667-672

Document en ligne

Thème : Soins. Cote : 00.07DEA

REPRESENTATION MORT ; INFIRMIERE ; SOIN INTENSIF ; EVALUATION ; ECHELLE MESURE

This study was to determine the attitude of nurses regarding the concept of a good death and terminal phase was conducted to determine the effect on patient care. This is a descriptive and analytical study. The study was conducted with 102 nurses who worked at an intensive care unit and were willing to participate to the study. The mean Good Death Scale total score was 56.75 ± 8.90 and the Frommelt Scale score was 95.10 ± 8.53. In conclusion, our study results suggest that the attitudes of the nurses during care to moribund patients are moderate and, when appropriate care is given, they perceive the death as a positive experience.

Origine : PubMed

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