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Article

Who will care for the caregiver? - distress and depression among spousal caregivers of older patients undergoing treatment for cancer

GOLDZWEIG, Gil ; SCHAPIRA, L. ; BAIDER, L. ; JACOBS, J. M. ; ANDRITSCH, E. ; ROTTENBERG, Y.
Supportive care in cancer, 06/03/2019, Pagination inconnue

Thème : Soins.

AIDANT NATUREL ; DETRESSE PSYCHOLOGIQUE ; DEPRESSION ; CONJOINT ; PERSONNE AGEE ; CANCER ; QUALITE VIE

PURPOSE: Although it is accepted that in general spousal caregivers of patients with cancer are under high emotional and physical strain, little is known about the quality of life specifically among spousal caregivers of older cancer patients. The aim of the current study is to explore the emotional toll of spousal caregivers of cancer patients aged 65-85 years.
METHODS: This study surveyed 242 spousal caregivers of patients = 65 years old, diagnosed with cancer, treated with curative or palliative intent, and within 6 months of treatment at enrollment. Standardized measures completed by the caregivers included depression measure (Geriatric Depression Scale); distress (Distress Thermometer); and social support (the Cancer Perceived Agents of Social Support). Logistic regression analyses were used in order to identify the predictor of clinical depression and distress. The analyses were adjusted for patient (sociodemographic, functional performance, and medical status) and caregiver (sociodemographic and social support) factors.
RESULTS: Among the caregivers, the frequencies of clinical depression and distress were 16.5% and 28% respectively. Increasing patient age and time from diagnosis were associated with reduced levels of caregiver depression. Higher levels of friends and spousal support (support from the patients) were associated with non-clinical levels of depression and distress.
CONCLUSION: Increasing patient age and caregiver's perceived spousal support may both have a positive effect on caregivers' levels of depression. This can be utilized by clinicians in the process of empowering older patients and their spousal caregivers to confront the challenges of cancer treatment into advanced old age.

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Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS - implications for palliative care teams

KUKULKA, Klaudia ; WASHINGTON, Karla T. ; GOVINDARAJAN, Raghav ; MEHR, David R.
The American journal of hospice and palliative care, 03/03/2019, Pagination inconnue

Thème : Médecine.

SCLEROSE LATERALE AMYOTROPHIQUE ; PRISE EN CHARGE GLOBALE ; BESOIN ; BESOIN FONDAMENTAL ; FAMILLE ; QUALITE VIE ; SPIRITUALITE

CONTEXT: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.
OBJECTIVE: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers.
METHODS: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS.
RESULTS: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease.
CONCLUSION: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.

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Article

Implementing a palliative medicine music therapy program - a quality improvement project

WOOD, Christina ; CUTSHALL, Susanne M. ; WISTE, Rachel M. ; GENTES, Rachel C. ; RIAN, Johanna S. ; TIPTON, Amie M. ; ANN-MARIE, Dose ; MAHAPATRA, Saswati ; CAREY, Elise C. ; STRAND, Jacob J.
The American journal of hospice and palliative care, 07/03/2019, p. 1-5

Thème : Médecine.

MUSICOTHERAPIE ; DEMARCHE PALLIATIVE ; CONTROLE SYMPTOME ; COPING ; SATISFACTION ; QUALITE VIE ; PATIENT ; PERCEPTION ; ETATS-UNIS

OBJECTIVES: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services.
METHODS: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project.
RESULTS:: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service.
CONCLUSIONS:: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.

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Article

Outcomes of an integrated urology-palliative care clinic for patients with advanced urological cancers - maintenance of quality of life and satisfaction and high rate of hospice utilization through end of life

HUEN, Kathy ; HUANG, Cher ; LIU, Hui ; KWAN, Lorna ; PANNELL, Stephanie ; LAVIANA, Aaron ; SAUCEDO, Josemanuel ; LORENZ, Karl A. ; BENNETT, Carol ; BERGMAN, Jonathan
The American journal of hospice and palliative care, 26/02/2019, Pagination inconnue

Thème : Soins.

CANCER URO NEPHROLOGIQUE ; DEMARCHE PALLIATIVE ; QUALITE VIE ; SATISFACTION ; UNITE SOINS PALLIATIFS ; HOSPITALISATION JOUR ; FIN VIE ; ETATS-UNIS

INTRODUCTION: Systematic integration of palliative care in a surgical setting is important, but has yet to be achieved. Despite evidence of early palliative care improving patients' quality of life, hospice utilization remains low. Through an integrated palliative care-urology clinic, we aim to assess the effect of early outpatient palliative care on hospice utilization, health-related quality of life (HRQOL) and satisfaction in patients with advanced urological cancers.
METHODS: Participants were recruited from 2012 through 2016 in the Greater Los Angeles Veterans Affairs Hospital. We partnered with palliative care clinicians to develop an integrated urology-palliative care clinic, where participants were seen by the palliative care team on the same day as their urological visit. The 12-item Short-Form Survey, Patient Satisfaction Questionnaire Short-Form, Patient Health Questionnaire, and Brief Pain Inventory were administered at initial and subsequent visits. Follow-up questionnaire results were compared between baseline and the 2 follow-up visits, and hospice utilization rates were assessed.
RESULTS: Fifty-three participants completed baseline questionnaires. Of those 22 (42%) patients completed at least one follow-up assessment. The median time for the first and second follow-up visits was 2.9 and 7.8 months, respectively. There were no significant differences in HRQOL and satisfaction between baseline and subsequent follow-up visits. A total of 36 (68%) of 53 participants who were enrolled at the start of the study were deceased. Of those, 29 (81%) expired within a home or inpatient hospice.
CONCLUSIONS: Rates of hospice use were high in an integrated palliative care-urology model. Health-related quality of life and satisfaction did not worsen over time.

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Article

Cancer pain and quality of life

RODRIGUEZ, Carmen ; JI, Ming ; WANG, Hsiao-Lan ; PADHYA, Tapan ; MAC MILLAN, Susan C.
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 116-123

Thème : Médecine. Cote : 00.07JHP

DOULEUR ; CANCER ; QUALITE VIE ; EVALUATION ; HOSPITALISATION JOUR ; ECHELLE MESURE

Cancer pain is an unrelenting symptom with the potential to alter the quality of life of patients. To adequately manage pain, nurses caring for cancer patients need to fully understand each patient's pain experience. The purpose of this study was to identify the intensity, distress, frequency, or constancy of pain in patients treated for cancer or cancer symptoms and to better understand patient barriers to pain management. This cross-sectional study included patients (N = 105) treated for cancer or cancer symptoms at 2 outpatient medical centers. Assessments included the Pain Barriers Scale, the Cancer Symptom Scale, and the Multidimensional QOL Scale–Cancer. Descriptive statistics and Spearman correlations were used to analyze the data. Sixty-nine percent of patients reported present pain of moderate to severe intensity that caused distress, was frequent/constant, or interfered with their lives. Patients with the greatest pain distress reported the greatest intensity of pain (r = 0.77) and the greatest interference (r = 0.78) with daily lives. Cancer pain was associated with significant distress and interference with life activities and occurred frequently or constantly for many study patients.

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Article

Ethical and clinical considerations in treating infections at the end of life

ADLER, Mary ; CAIN, Joan ; VAUGHAN, Leigh
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 04/2019, vol.21, n°2, p. 110-115

Thème : Ethique et déontologie. Cote : 00.07JHP

FIN VIE ; INFECTION NOSOCOMIALE ; QUALITE VIE ; ETHIQUE SOIN ; PRONOSTIC ; OUTIL

Patients often affirm the goal to pursue comfort at the end of life, although clinicians may struggle with how best to provide comfort and face the ethical dilemma of treating or allowing a suspected infection to unfold. Treating an infection at the end of life does not allow for uniform improvement in symptoms and more time with family and friends. Additionally, there is potential for burden to the patient or health care system and treatment may occur to the exclusion of other comfort measures. Currently, the practice of providing or forgoing antibiotics at the end of life is variable, and literature supporting best practices can be contradictory. Data to support the use or withholding of treatment have been scant and vary across settings and patient populations. We review common obstacles providers face, prognostication tools that may assist in clinical decision making, the ethical support for withholding therapy, and how to factor in potential burdens of treatment. We propose that nurses, whether at the bedside in an acute care or nursing facility or in the home setting as a member of the interdisciplinary home hospice team, are uniquely qualified to help patients and families navigate this challenging clinical decision.

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Article

Inequalities in financial distress, symptoms, and quality of life among patients with advanced cancer in France and the U.S

BARBARET, Cécile ; DELGADO-GUAY, Marvin O. ; SANCHEZ, Stéphane ; BROSSE, Christelle ; RUER, Murielle ; MONSARRAT, Léa ; MICHAUD, Patrick ; SCHOTT, Anne Marie ; BRUERA, Eduardo ; FILBET, Marilène
The oncologist, 15/03/2019, p. 1-7

Thème : Soins. Cote : eD02.03.00

QUALITE VIE ; CANCER ; FRANCE ; ETATS-UNIS ; STRESS ; COUT ; SYMPTOME

Background.: Financial distress (FD) is common among patients with advanced cancer. Our purpose was to compare the frequency and intensity of FD and its associations with symptom distress and quality of life (QOL) in these patients in France and the U.S.
Materials and Methods: In this secondary analysis of two cross-sectional studies, we assessed data on 292 patients who received cancer care at a public hospital or a comprehensive cancer center in France (143 patients) or the U.S. (149 patients). Outpatients and hospitalized patients over 18 years of age with advanced lung or breast or colorectal or prostate cancer were included. Diagnosed cognitive disorder was considered a noninclusion criterion. Advanced cancer included relapse or metastasis or locally advanced cancer or at least a second-line chemotherapy regimen. Patients self-rated FD and assessed symptoms, psychosocial distress, and QOL on validated questionnaires.
Results: The average patient age was 59 years, and 144 (49%) were female. FD and high intensity were reported more frequently in U.S. patients than in French (respectively 129 [88%] vs. 74 [52%], p < .001; 100 [98%] vs. 48 [34%], p < .001,). QOL was rated higher by the U.S. patients than by the French (69 [SD, 18] vs. 63 [SD, 18], p = .003). French patients had more psychological symptoms such as anxiety (8 [SD, 4] vs. 6 [SD, 5], p = .008). Associations were found between FD and U.S. residence, FD and single status (0.907, p = .023), and FD and metastasis (1.538, p = .036). In contrast, negative associations were found between FD and older age (-0.052, p = .003) and FD and France residence (-3.376, p = .001).
Conclusion: Regardless of health care system, FD is frequent in patients with advanced cancer. U.S. patients were more likely to have FD than French patients but reported better QOL. Further research should focus on factors contributing to FD and opportunities for remediation.

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Article

The meaning of spirituality and spiritual well-being among Thai breast cancer patients - a qualitative study

PHENWAN, Tharin ; PEERAWONG, Thanarpan ; TULATHAMKIJ, Kandawsri
Indian journal of palliative care, 03/2019, vol.25, n°1, p. 119-123

Thème : Soins. Cote : eD02.03.00

SPIRITUALITE ; THAILANDE ; CANCER SEIN ; RECHERCHE QUALITATIVE ; SENS ; BIEN ETRE ; HOSPITALISATION JOUR ; QUALITE VIE

Context: Spirituality is the essence of a human being. Patients who have good spiritual well-being (SWB) will also have better quality of life. However, health-care providers usually under-assess this aspect due to lack of practical guideline. In Thailand, the validated survey came from a different cultural background and was heavily based on Buddhism approach.
Aims: The aim of the study is to assess the meaning of spirituality and SWB in Thai breast cancer patients in Southern Thailand where people have more diverse cultural and religious background.
Settings and Design: Descriptive qualitative phenomenology design.
Subjects and Methods: In-depth interview with stratified purposive sampling method. The interviews took place in the oncology outpatient unit department and participants' home. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, able to communicate in Thai, has a Palliative Performance Scale more than 50, and was not diagnosed with any psychological disorder.
Statistical Analysis Used: Descriptive statistic.
Results: From October 2016 to February 2018, 16 women joined the study. Three themes emerged with five subthemes: (1) feeling life worthwhile, (2) sense of belonging in the community, and (3) feeling connected to the nature.
Conclusions: For Thai women, who have breast cancer, their spirituality focuses on family, mainly their children. They also have better SWB if they have good family relationship, social support, or feeling connected with nature or higher being in a religious or nonreligious way. Future survey design needs to be broader in a secular view and on another perspective rather than the religious approach.

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Article

Advance care planning for patients and their relatives

BENDSTRUP, Elisabeth ; LØKKE, Anders ; AAGAARD, Susanne ; WIGGERS, Henrik ; JOHNSEN, Anna Thit ; NEERGAARD, Mette Asbjoern ; SKORSTENGAARD, Marianne H. ; BROGAARD, Trine ; JENSEN, Anders Bonde ; ANDREASSEN, Pernille
International Journal of Palliative Nursing, 02/03/2019, vol.25, n°3, p. 112-127

Thème : Soins.

PLANIFICATION ; ANTICIPATION ; SOIN ; MALADIE RESPIRATOIRE ; MALADIE CARDIOVASCULAIRE ; CANCER ; QUALITE VIE ; ANXIETE ; DEPRESSION ; SATISFACTION

BACKGROUND: Advance care planning (ACP) has been suggested to improve the quality of life (QoL) and mental wellbeing in severely ill patients and their relatives.
AIM: To investigate the effects of ACP among patients with lung, heart and cancer diseases with an estimated life-span of up to 12 months.
METHODS: Patients and relatives were randomised into two groups: one receiving usual care and one receiving ACP and usual care. Themes from the ACP discussion were documented in patients' electronic medical file. Participants completed self-reported questionnaires four to five weeks after randomisation.
FINDINGS: In total, 141 patients and 127 relatives participated. No significant differences were found according to outcomes. However, patients with non-malignant diseases had the highest level of anxiety and depression; these patients seemed to benefit the most from ACP, though not showing statistically significant results.
CONCLUSION: No significant effects of ACP among patients with lung, heart, and cancer diseases and their relatives regarding HRQoL, anxiety, depression, and satisfaction with healthcare were found.

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Article

Are disease modifying treatments enough? - improving quality of life in late-stage patients

ROSEN, Allyson C. ; TOY, Leslie ; LANGSTON, Ashley
Journal of Alzheimer's disease, 11/03/2019, p. 1-3

Thème : Médecine.

QUALITE VIE ; FIN VIE ; MALADIE ALZHEIMER ; ETHIQUE SOIN

The potential for successful disease modifying treatments for Alzheimer's disease (AD) opens up the possibility that there will be a large cohort of patients living with late-stage dementia and poor quality of life. There must thus be a parallel effort to leverage restorative therapies that improve quality of life in these patients. With the potential for stopping the onset of new patients with AD must come a commitment to those patients living with this chronic disability for many more years than first thought. Legal and ethical implications surrounding who makes decisions and equity in receiving care will become increasingly important if AD is no longer a terminal illness.

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Article

Experiences of symptoms and health service preferences among older people living with chronic diseases during the last year of life

PUNGCHOMPOO, Wanicha ; SUWAN, Panudda ; KUNAPUN, Sukonta ; PUNGCHOMPO, Sirirat ; TUNGPUNKOM, Patraporn
International Journal of Palliative Nursing, 02/03/2019, vol.25, n°3, p. 129-141

Thème : Age de la vie, situations spécifiques liées à la fin de vie.

SYMPTOME ; PREFERENCE ; PERSONNE AGEE ; MALADIE CHRONIQUE ; FIN VIE ; THAILANDE ; QUALITE VIE ; ACCES SOIN ; DEMARCHE PALLIATIVE ; BESOIN

BACKGROUND: There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences.
AIMS: To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers.
METHODS: The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17.
FINDINGS: The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home.
CONCLUSION: The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.

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Article

Service delivery models to maximize quality of life for older people at the end of life - a rapid review

EVANS, Catherine J. ; ISON, Lucy ; ELLIS-SMITH, Clare ; NICHOLSON, Caroline ; COSTA, Alessia ; OLUYASE, Adejoke O. ; NAMISANGO, Eve ; BONE, Anna E. ; BRIGHTON, Lisa Jane ; YI, Deokhee ; COMBES, Sarah ; BAJWAH, Sabrina ; GAO, Wei ; HARDING, Richard ; ONG, Paul ; HIGGINSON, Irene J. ; MADDOCKS, Matthew
The Milbank quarterly, 03/2019, vol.97, n°1, p. 113-175

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.04

QUALITE VIE ; PERSONNE AGEE ; FIN VIE ; REVUE LITTERATURE ; GERIATRIE ; DEMARCHE PALLIATIVE ; OFFRE SOIN ; POLITIQUE SANITAIRE

Policy Points: We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.
CONTEXT: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.
METHODS: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.
RESULTS: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.
CONCLUSIONS: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.

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Article

The effects of aromatherapy massage on improvement of anxiety among patients receiving palliative care - a systematic review of randomized controlled trials

HSU, Chia-Hsien ; CHI, Ching-Chi ; CHEN, Pei-Shih ; WANG, Shu-Hui ; TUNG, Tao-Hsin ; WU, Shih-Chung
Medicine, 03/2019, vol.98, n°9, p. 1-6

Thème : Médecine. Cote : eD03.05.04

AROMATHERAPIE ; ANXIETE ; DEMARCHE PALLIATIVE ; REVUE LITTERATURE ; QUALITE VIE ; ESSAI CONTROLE RANDOMISE

BACKGROUND: Anxiety in patients receiving palliative care is a noteworthy concern because it may affect their quality of life. Aromatherapy has been widely utilized to improve anxiety among patients receiving palliative care.
OBJECTIVE: To investigate the effectiveness of anxiety improvement in patients receiving palliative care by comparing the intervention group (aromatherapy massage) with the control group (common massage alone).
METHODS: A literature search was performed using PubMed, Cochrane Library, Embase, MEDLINE, and CINAHL for all related studies from inception through November 30, 2018 without restriction on language. A quantitative synthesis of randomized controlled trials (RCTs) was conducted to compare the difference in effectiveness scores between the aromatherapy massage and only common massage groups by employing a random-effect model.
RESULTS: We included three RCTs with a total of 160 participants (81 in the intervention group and 79 in the control group) in our systematic review and conducted a quantitative synthesis. The secondary data from the reviewed trials were then pooled using a random-effect model. Anxiety (mean difference = -2.60 [95% confidence interval: -7.82, 2.63], P = .33) was assessed using anxiety scores from the State-Trait Anxiety Inventory.
CONCLUSION: Compared with common massage alone, aromatherapy massage does not provide significant effectiveness of anxiety improvement among patients receiving palliative care.

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Emergency medicine palliative care access (EMPallA) - protocol for a multicentre randomised controlled trial comparing the effectiveness of specialty outpatient versus nurse-led telephonic palliative care of older adults with advanced illness

GRUDZEN, Corita R. ; SHIM, Deborah J. ; SCHMUCKER, Abigail M. ; CHO, Jeanne ; GOLDFELD, Keith S. ; EMPALLA INVESTIGATORS
BMJ Open, 25/01/2019, vol.9, n°1, p. 1-8

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.04

MEDECINE URGENCE ; DEMARCHE PALLIATIVE ; PROTOCOLE RECHERCHE ; ESSAI CONTROLE RANDOMISE ; HOSPITALISATION JOUR ; EFFICACITE ; MALADIE GRAVE ; PERSONNE AGEE ; TELEPHONE ; SERVICE URGENCES ; MALADIE LETALE ; QUALITE VIE

Introduction: Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.
Methods and analysis: This is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life.
Ethics and dissemination Institutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal.

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Current advances in palliative & hospice care - problems and needs of relatives and family caregivers during palliative and hospice care-an overview of current literature

OECHSLE, Karin
Medical sciences, 12/03/2019, vol.7, n°3, p. 1-16

Thème : Soins. Cote : eD02.03.03

DEMARCHE PALLIATIVE ; UNITE SOINS PALLIATIFS ; BESOIN ; AIDANT NATUREL ; QUALITE VIE ; TRAJECTOIRE MALADIE

Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient-}relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.

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Defining palliative care needs in Parkinson's disease

KLUGER, Benzi M. ; SHATTUCK, Jo ; BERK, Julie ; SEBRING, Kelly ; JONES, Wallace ; BRUNETTI, Fabian ; FAIRMONT, Isabel ; BOWLES, Daniel W. ; SILLAU, Stefan ; BEKELMAN, David B.
Movement disorders clinical practice, 02/2019, vol.6, n°2, p. 125-131

Thème : Médecine. Cote : eD03.03

BESOIN FONDAMENTAL ; DEMARCHE PALLIATIVE ; CANCER ; ANALYSE COMPARATIVE ; PREFERENCE ; PLANIFICATION ; ANTICIPATION ; SOIN ; MALADIE PARKINSON ; QUALITE VIE

Objectives: Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning.
Methods: Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning.
Results: Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician.
Conclusions: Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.

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Early integrated palliative care in chronic heart failure and chronic obstructive pulmonary disease - protocol of a feasibility before-after intervention study

SIOUTA, N. ; HEYLEN, A. ; AERTGEERTS, B. ; CLEMENT, P. ; VAN CLEEMPUT, J. ; JANSSENS, W. ; MENTEN, J.
Pilot and feasibility studies, 2019, vol.5, p. 1-9

Thème : Médecine. Cote : eD03.03

DEMARCHE PALLIATIVE ; MALADIE CHRONIQUE ; INSUFFISANCE CARDIAQUE ; MALADIE RESPIRATOIRE ; ACCES SOIN ; PROTOCOLE SOIN ; SERVICE SOIN AIGU ; SATISFACTION ; QUALITE VIE ; CONTROLE SYMPTOME ; BELGIQUE ; QUALITE SOIN

Background: Patients with chronic heart failure (CHF) and patients with chronic obstructive pulmonary disease (COPD) are amenable to integrated palliative care (PC); however, despite the recommendation by various healthcare organizations, these patients have limited access to integrated PC services. In this study, we present the protocol of a feasibility prospective study that aims to explore if an "early integrated PC" intervention can be performed in an acute setting (cardiology and pulmonology wards) and whether it will have an effect on (i) the satisfaction of care and (ii) the quality of life and the level of symptom control of CHF/COPD patients and their informal caregivers.
Methods: A before-after intervention study with three phases, (i) baseline phase where the control group receives standard care, (ii) training phase where the personnel is trained on the application of the intervention, and (iii) intervention phase where the intervention is applied, will be carried out in cardiology and pulmonology wards in the University Hospital Leuven for patients with advanced CHF/COPD and their informal caregivers. Eligible patients (both control and intervention group) and their informal caregivers will be asked to complete the Palliative Outcome Scale, the CANHELP Lite, and the Advance Care Planning Questionnaire at the inclusion moment and 3 months after hospital discharge.
Discussion: The present study will assess the feasibility of carrying out PC-focused studies in acute wards for CHF/COPD patients and draw lessons for the further integration of PC alongside standard treatment. Further, it will measure the quality of life and quality of care of patients and thus shed light on the care needs of this population. Finally, it will evaluate the potential efficacy of the "early integrated palliative care" by comparing against existing practices..

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Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

FRIEDMAN, Deborah ; LINNEMANN, Rachel W. ; ALTSTEIN, Lily L. ; GEORGIOPOULOS, Anna M. ; ISLAM, Suhayla ; BACH, Kieu-Tram ; ST JOHN, Anita ; FRACCHIA, M. Shannon ; NEURINGER, Isabel ; LAPEY, Allen ; SICILIAN, Leonard ; MOSKOWITZ, Samuel M. ; YONKER, Lael M.
Pediatric pulmonology, 10/03/2019, Pagination inconnue

Thème : Médecine.

DEMARCHE PALLIATIVE ; QUALITE VIE ; MUCOVISCIDOSE ; EFFICACITE ; CONTROLE SYMPTOME

BACKGROUND: Despite the significant impact of chronic symptoms on quality of life with cystic fibrosis (CF), the role of palliative care in management of this disease is not well defined. The coping, goal assessment, and relief from evolving CF symptoms (CF-CARES) model is a primary palliative care intervention designed to provide chronic symptom management at all stages of the disease. The goal of this pilot study was to estimate the effectiveness of the CF-CARES intervention on improving chronic symptoms and quality of life for people living with CF.
METHODS: A structured assessment was used to guide referral to supportive services intended to address burdensome symptoms. Follow-up assessments were performed approximately 3 and 6 months later. Longitudinal regression analyses of changes in symptoms and quality of life were performed for all participants regardless of utilization of supportive services. Subgroup analyses were performed for subjects participating in mental health and alternative health services.
RESULTS: Forty-one subjects completed assessment and referral processes. The mean number of CF-associated symptoms decreased over time, as did respiratory symptom-related distress and depressive symptoms. Subjects utilizing alternative health services reported less psychological distress at follow-up. Among subjects with severe disease, mental health, and quality of life improved, especially for those using mental health services.
CONCLUSIONS: The CF-CARES model resulted in significant mental health and quality-of-life benefits, suggesting the value of integrating symptom management interventions into routine CF care. Moreover, mental health services can play a key role in CF-specific primary palliative care, especially for those with advanced disease.

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Parkinson's disease - part 2 Palliation for common nonmotor symptoms #362

ESTUPINAN, Danny ; ROCHE-GREEN, Alva ; ROBINSON, Maisha T. ; SHANNON, Robert P.
JOURNAL OF PALLIATIVE MEDICINE, 11/2018, vol.21, n°11, p. 1662-1664

Thème : Médecine. Cote : 00.07JOU

MALADIE PARKINSON ; CONTROLE SYMPTOME ; SYMPTOME ; QUALITE VIE ; TRAJECTOIRE MALADIE ; STRATEGIE

Nonmotor symptoms likely affect overall quality of life in Parkinson's disease (PD) as much as motor symptoms. Fast Fact #361 discussed the natural trajectory of PD. This Fast Fact will focus on management stratégies of common nonmotor symptoms in PD patients.
[Début de l'article]

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Associations between polypharmacy, symptom burden, and quality of life in patients with advanced, life-limiting illness

SCHENKER, Yael ; PARK, Seo Young ; JEONG, Kwonho ; PRUSKOWSKI, Jennifer ; KAVALIERATOS, Dio ; RESICK, Judith ; ABERNETHY, Amy P. ; KUTNER, Jean S.
Journal of general internal medicine, 04/02/2019, p. 1-8

Thème : Age de la vie, situations spécifiques liées à la fin de vie.

PHARMACIEN ; SYMPTOME ; QUALITE VIE ; MALADIE LETALE ; EVALUATION ; QUESTIONNAIRE ; ECHELLE MESURE ; GERIATRIE

BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases.
OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year).
DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation.
PARTICIPANTS: Adults with advanced, life-limiting illness.
MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL.
KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took = 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms.
CONCLUSIONS: Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting.
NIH TRIAL REGISTRY NUMBER: ClinicalTrials.gov Identifier for Parent Study - NCT01415934.

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