Abstract：
CONTEXT:Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members' or caregivers' experiences of care. OBJECTIVES:To evaluate the instruments currently in use to inform next steps for research and policy in this area. METHODS:We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS(®) for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed. RESULTS:We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated. CONCLUSION:This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings.
journal_name
J Pain Symptom Managejournal_title
Journal of pain and symptom managementauthors
Lendon JP,Ahluwalia SC,Walling AM,Lorenz KA,Oluwatola OA,Anhang Price R,Quigley D,Teno JMdoi
10.1016/j.jpainsymman.2014.10.018subject
Has Abstractpub_date
2015-05-01 00:00:00pages
904-15.e1-3issue
5eissn
0885-3924issn
1873-6513pii
S0885-3924(14)00940-3journal_volume
49pub_type
杂志文章,meta分析,评审abstract：BACKGROUND:Dyspnea is one of the most distressing symptoms encountered by advanced cancer patients. In this study, we aimed to evaluate the role of opioids in the management of cancer-related dyspnea. METHODS:A systematic review and meta-analysis based on Randomized Controlled Trials was conducted in the databases PUB...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2020.07.021
更新日期：2021-01-01 00:00:00
abstract：:Rational drug treatment of chronic musculoskeletal pain remains a challenge. Although commonly prescribed, the true efficacy of opioid analgesics or of nonsteroidal antiinflammatory drugs remains to be established. Using an N-of 1 design, eight patients with regional cervicobrachial pain received ibuprofen 800 mg/day,...
journal_title：Journal of pain and symptom management
pub_type： 临床试验,杂志文章
doi：10.1016/s0885-3924(98)00369-8
更新日期：1998-04-01 00:00:00
abstract：:The effects of opioids usually parallel the plasma concentrations but with a temporal shift. This temporal shift differs between opioids. It is small with alfentanil or remifentanil and very long with the active metabolite of morphine, morphine-6-glucuronide (M6G). The mathematical and experimental techniques for mode...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
doi：10.1016/j.jpainsymman.2005.01.012
更新日期：2005-05-01 00:00:00
abstract：:Palliative care services provided to patients and families vary substantially across hospices. Literature suggests regulation can act as a standardizing force in health care delivery. However, little is known about the effect of regulation on the delivery of palliative care in hospice and whether its effect differs fo...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2007.09.014
更新日期：2008-08-01 00:00:00
abstract：CONTEXT:The impact of hospice care services on the utilization of life-sustaining treatments during end-of-life care in terminally ill patients has not been extensively studied. OBJECTIVES:To determine the impact of hospice care services on the utilization of life-sustaining treatments during the last three months of ...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2020.07.028
更新日期：2021-02-01 00:00:00
abstract：:Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2007.12.018
更新日期：2008-12-01 00:00:00
abstract：:Heart failure (HF) experts recommend initiation of continuous inotrope therapy, such as milrinone or dobutamine, for clinically decompensating patients with stage D HF. Although originally intended to serve solely as a bridge to more definitive surgical therapies, more and more patients are receiving inotrope therapy ...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
doi：10.1016/j.jpainsymman.2017.09.026
更新日期：2018-01-01 00:00:00
abstract：:To identify aspects of end-of-life care in the U.S. Department of Veterans Affairs (VA) health care system that are not assessed by existing survey instruments and to identify issues that may be unique to veterans, telephone interviews using open-ended questions were conducted with family members of veterans who had r...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2007.03.008
更新日期：2008-02-01 00:00:00
abstract：CONTEXT:Joint and muscle aches, pain, and stiffness have been reported to be a problem for some women after adjuvant breast cancer treatment; however, the extent and impact of this problem are unknown. OBJECTIVES:The purpose of this study was to determine the prevalence of this problem in comparison with women of a si...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2012.10.282
更新日期：2013-10-01 00:00:00
abstract：:This study sought to characterize the nature of breakthrough pain experienced by 22 hospice patients and to assess the perceptions of their respective caregivers. Questionnaires were administered by trained hospice nurses to determine key elements of episodic pains in this home-based terminally ill population. Eighty-...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/s0885-3924(98)00045-1
更新日期：1998-09-01 00:00:00
abstract：CONTEXT:We know little about how many outpatients of a modern cancer center suffer from clinically significant unrelieved pain and the characteristics of these patients to guide better care. OBJECTIVES:To determine the prevalence of clinically significant pain (CSP) in the outpatients of a regional cancer center and t...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2011.03.010
更新日期：2012-01-01 00:00:00
abstract：:The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Pall...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2017.05.013
更新日期：2018-02-01 00:00:00
abstract：CONTEXT:Older adults with advanced cancer face uncertainty related to their disease and treatment. OBJECTIVES:To evaluate the associations of uncertainty with psychological health and quality of life (QoL) in older adults with advanced cancer. METHODS:Secondary cross-sectional analysis of baseline data from a nationa...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2020.08.012
更新日期：2021-02-01 00:00:00
abstract：:Cancer patients requiring strong opioid analgesia (n = 202; mean age, 61.5 years; range, 18-89 years; 55% men) were recruited from 38 United Kingdom palliative care centers into a randomized, open, two-period, crossover study comparing transdermal fentanyl with sustained-release oral morphine. Patients received one tr...
journal_title：Journal of pain and symptom management
pub_type： 临床试验,杂志文章,随机对照试验
doi：10.1016/s0885-3924(97)00082-1
更新日期：1997-05-01 00:00:00
abstract：CONTEXT:Many surveys have evaluated patient-related barriers to pain management. OBJECTIVES:To explore associations between a preference for opioids and general attitudes toward drugs, the experience and information received as a bereaved family, and beliefs regarding a good death. METHODS:A cross-sectional survey, p...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2014.04.015
更新日期：2015-01-01 00:00:00
abstract：:Research in affective disorders has shown that there is a clear link between mood and light exposure, and that exposure to bright wide-spectrum light (phototherapy) may be an effective antidepressant treatment in some clinical situations. Cancer patients, especially those in the terminal phase of illness, have a high ...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/0885-3924(94)90116-3
更新日期：1994-11-01 00:00:00
abstract：:The microcirculation appears to be impaired in cold chronic complex regional pain syndrome (CRPS). This double-blind, placebo-controlled, randomized trial investigated the effect of the nitric oxide (NO) donor isosorbide dinitrate (ISDN) on the peripheral blood flow in patients with chronic CRPS. Twenty-four patients ...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,随机对照试验
doi：10.1016/j.jpainsymman.2008.10.006
更新日期：2009-09-01 00:00:00
abstract：CONTEXT:Individuals from low socioeconomic (SE) groups have less resources and poorer health outcomes. Understanding the nature of access to appropriate end-of-life care services for this group is important. OBJECTIVES:To evaluate the literature in the developed world for barriers to access for low SE groups. METHODS...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
doi：10.1016/j.jpainsymman.2010.10.265
更新日期：2011-07-01 00:00:00
abstract：:The management of pain in the patient with advanced cancer requires comprehensive assessment and expertise in the application of many therapeutic techniques. Given the complexity of the problems posed by these patients, it is not surprising that most aspects of palliative care derive from personal anecdote and clinica...
journal_title：Journal of pain and symptom management
pub_type： 指南,杂志文章,评审
doi：10.1016/0885-3924(90)90047-n
更新日期：1990-10-01 00:00:00
abstract：:We report on the adaptation and evaluation of a previously developed patient-centered instrument that we call the Quality of End-of-life care and Satisfaction with Treatment (QUEST) scale. In a separate group of 30 inpatients, test-retest reliability for QUEST items ranged from 63% agreement (kappa = 0.43) to 93% agre...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/s0885-3924(02)00409-8
更新日期：2002-06-01 00:00:00
abstract：CONTEXT:Cancer pain has a severe impact on quality of life and is associated with numerous psychosocial responses. Recent studies suggest that treatment of cancer pain has improved during the last decade. OBJECTIVES:The aim of this review was to examine the present status of pain prevalence and pain severity in patien...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,meta分析,评审
doi：10.1016/j.jpainsymman.2015.12.340
更新日期：2016-06-01 00:00:00
abstract：:Accumulation of active (toxic) metabolites of opioids might explain cases of opioid toxicity when high doses are used for long periods of time. Other mechanisms of late toxicity of opioids may be found at the receptor level. Whatever the cause, a change of opioids using equianalgesic doses can be expected to improve s...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/0885-3924(95)90924-c
更新日期：1995-07-01 00:00:00
abstract：:Inadequate nursing education is a major impediment to effective pain relief for cancer patients throughout the world. This study was conducted to identify the level of cancer pain knowledge among baccalaureate student nurses and to determine whether specific activities affect this level of knowledge. Two questionnaire...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/0885-3924(92)90134-4
更新日期：1992-11-01 00:00:00
abstract：CONTEXT:Fatigue and depression are two prominent concerns in patients on in-hospital hemodialysis (IHHD) that have recently been identified as research priorities in the nephrology community. Although they are often reported to co-exist, no synthesis of the literature examining their relationship is available. OBJECTI...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
doi：10.1016/j.jpainsymman.2016.10.365
更新日期：2017-04-01 00:00:00
abstract：:The hospice model of care of the dying patient is regarded as a model of excellence; however, outcomes of this care have been poorly demonstrated. Integrated Care Pathways (ICPs) provide a method of recording and measuring outcomes of care. The ICP document replaces all previous documentation and is a multiprofessiona...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/s0885-3924(00)00240-2
更新日期：2001-01-01 00:00:00
abstract：:The Japanese Society of Palliative Medicine has developed a clinical guideline to minimize the large variation in clinical practice of artificial hydration therapy for terminally ill cancer patients. The primary aim of this preliminary study was to explore the effects of a five-hour interactive workshop based on the g...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2008.10.007
更新日期：2009-09-01 00:00:00
abstract：:The aims of this study were to quantify the prevalence of pain among hospitalized Italian patients and to describe the potential determinants of pain in this population. All patients older than 18 years and hospitalized for at least 24 hours in one of the 30 public hospitals of the Liguria region (n = 4709) were eligi...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/s0885-3924(01)00405-5
更新日期：2002-03-01 00:00:00
abstract：CONTEXT:There is an increasing use of palliative care units (PCUs) for the treatment of terminally ill cancer patients. Thus, it is important to evaluate the care and quality of life of terminally ill cancer patients treated in PCUs so that improvements can be made. Limited research has investigated the quality of dyin...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2012.04.010
更新日期：2013-04-01 00:00:00
abstract：:A treatment program was developed involving cognitive and behavioral strategies for the treatment of migraine headaches with adolescents at the Children's Hospital of Eastern Ontario. These techniques include: a headache diary, progressive relaxation techniques, cognitive restructuring, distraction or attention focusi...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/0885-3924(89)90007-9
更新日期：1989-09-01 00:00:00
abstract：CONTEXT:General practitioners (GPs) and community nurses (CNs) have a central role in palliative care. With health policy focusing more and more on enabling patients to die at home, primary health care professionals are increasingly responsible for symptom management of patients near the end of life. OBJECTIVES:1) To ...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2012.09.004
更新日期：2013-09-01 00:00:00
