En ligne (disponible) - Monographie
End-of-life care and outcomes / LORENZ, Karl ; LYNN, Joanne ; MORTON, Sally C. ; DY, Sydney ; MULARASKI, Richard ; SHUGARMAN, Lisa R. ; SUN, Virginia ; WILKINSON, Anne M. ; MAGLIONE, Margaret ; SHEKELLE, Paul G..
Rockville : Agency for Healthcare Research and Quality, 2004, 331 f. (11-01-2005)
Format de fichier : Adobe Acrobat PDF
Droits d'auteur : La reproduction de ce document à des fins non commerciales est autorisée à condition que la source soit dûment mentionnée.

Mots-clés principaux
Phase terminale
Fin de la vie
Qualité des soins et services
Soins en fin de vie

Résumé :

Ce rapport de l'Agency for Healthcare Research and Quality (AHRQ) aux États-Unis analyse cinq grandes questions : les personnes en phase terminale; les indicateurs de qualité de l'expérience de fin de vie; les patients, familles et systèmes de santé associés aux soins en fin de la vie; les processus et les interventions associés aux bons et mauvais résultats ainsi que les directions pour les recherches futures pour améliorer les soins en fin de vie.

This report addresses the following key questions:
1. What outcome variables are valid indicators of the quality of the end-of-life experience for the dying person and for
the surviving loved ones?
a. What individual outcome measures are most strongly associated with overall satisfaction with end-of-life care?
b. What is the reliability and validity of specific instruments for measuring quality of life or quality of care at the
2. What patient, family, and health care system factors are associated with better or worse outcomes at end of life?
a. What individual patient factors (e.g., age, gender, race/ethnicity, underlying illness, education, etc.) are associated with better or worse outcomes at end of life?
b. What family factors (e.g., relationship to patient, race/ethnicity, etc.) are associated with better or worse outcomes at end of life, including both outcomes reported by the family and how the family affects outcomes experienced by the patient?
c. What health care system factors (e.g., site of care, type of provider, support services, etc.) are associated with better or worse outcomes?
3. What processes and interventions are associated with improved or worsened outcomes?
a. What is the effectiveness of specific healthcare interventions for improving specific outcomes in patients at the end of life?
b. Does effectiveness of specific interventions vary among different populations?
4. What are future research directions for improving end of-life care?

Structured abstract:
Context: The "end-of-life" refers to a prolonged, difficult period for patients and caregivers. Nine-tenths of Medicare-insured elderly live with a serious, chronic condition before death. Due to our aging population, Americans will increasingly face such challenges.

Objectives: Focusing on the outcomes patient and family satisfaction; pain, dyspnea, depression and anxiety and behavioral problems in dementia; continuity; caregiving burden other than
bereavement; and advance care planning, we conducted a systematic review to evaluate the following:
1. The scope of the end-of-life population. 2. Outcome variables that are valid indicators of the quality of the end-of-life experience for the dying person and surviving loved ones. 3. Patient, family, and healthcare system associated with better or worse outcomes at end of-life. 4. Processes and interventions associated with improved or worsened outcomes. 5. Future research directions for improving end-of-life care.

Data Sources: MEDLINE®, Database of Reviews of Effects (DARE), the National Consensus Project for Quality Palliative Care, Toolkit of Instruments to Measure End-of-life Care (TIME), and citations recommended by an international expert panel.

Study Selection: We focused on studies in the Western literature related to adult patient or caregiver end-of-life outcomes published between 1990 and April 2004, excluding studies of chemotherapy, radiotherapy, and similar technical care.

Data Extraction: We identified a total of 24,423 citations from all sources; 5,216 went on to abstract review, of which 911 articles were considered for detailed review including 95 systematic reviews, 134 intervention, and 682 observational studies.

Data Synthesis: Evidence is strongest in cancer, reflecting the degree to which palliative care has been integrated into oncology practice. Studies demonstrate strong associations between satisfaction and communication, pain control, practical support, and enhanced caregiving. We identified high-quality measures of quality of life, satisfaction, quality of care, and symptoms. Strong evidence undergirds cancer pain and depression treatment, and small studies suggest that opioids benefit dyspnea. Caregiving studies demonstrated inconsistent effects and focused on dementia. Strong evidence supports interventions to improve continuity in cancer and congestive heart failure (CHF), although CHF studies lack generalizability and palliative outcomes. Inconsistent evidence supports advance care planning, although studies often measure utilization rather than patient and family-centered outcomes.

Conclusions: We identified a number of priorities including a need to (1) characterize the implications of alternative definitions of the "end-of-life"; (2) test measures in diverse settings and populations; (3) in studies of satisfaction, emphasize specific process, especially those less studied (e.g., non-pain symptoms, spiritual support, and continuity); (4) address methodological challenges in measurement; (5) conduct studies of the epidemiology and clinical significance of symptoms in non-cancer conditions; (6) conduct larger studies of interventions for dyspnea; (7)
conduct studies of short- as well as long-term treatment of depression; (8) conduct studies of caregiving in populations other than cancer and dementia; (9) evaluate economic and social dimensions of caregiving; (10) in continuity research, emphasize common settings (e.g., ambulatory care) and studies of nursing home-hospital continuity and involving multiple providers; and (11) in studies of continuity in CHF, incorporate palliative domains and ensure that studies are generalizable to the sickest patients.

Langue : Anglais
Type d'ouvrage AQESSS : R
Doc n° : 18294
NumRec : 1829403


  Copier Permanent URL de cette page Ajouter cette page


Pour réserver ce document, vous devez d'abord vous connecter

Aller vers :   IUGM    Fondation IUGM   Centre de recherche IUGM