Abstract：
CONTEXT:Family members of seriously ill patients experience significant burden as they advocate with providers and participate in key decisions for loved ones. Most assessments focus on patient experience, yet family members' own quality of experience is central to comprehensive care. OBJECTIVES:This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care. METHODS:We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability. RESULTS:The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Further analyses produced a final brief scale comprising 17 items, demonstrating appropriate convergent and divergent validity. Test-retest reliability demonstrated expected levels of stability in a highly changeable population. The scale provides an assessment of family experience and includes subscales assessing relationship with health care provider and completion. Additional scale items assess symptom experience and issues of preparation. CONCLUSION:The QUAL-E (Fam) is a companion instrument to the patient QUAL-E measure of quality of life at the end of life and is part of a package of assessment tools that can help evaluate the entire patient experience and contribute to quality care.
journal_name
J Pain Symptom Managejournal_title
Journal of pain and symptom managementauthors
Steinhauser KE,Voils CI,Bosworth HB,Tulsky JAdoi
10.1016/j.jpainsymman.2014.04.006subject
Has Abstractpub_date
2014-12-01 00:00:00pages
1168-81issue
6eissn
0885-3924issn
1873-6513pii
S0885-3924(14)00254-1journal_volume
48pub_type
杂志文章,多中心研究abstract：:Visual analogue scales (VAS) and verbal rating scales (VRS) are widely used to assess pain. This paper presents a secondary analysis of a subsection of data collected as part of an evaluation of an intervention to improve nighttime pain. The aims were to describe the relationship between the VAS and VRS; to compare ch...
journal_title：Journal of pain and symptom management
pub_type： 临床试验,杂志文章
doi：10.1016/s0885-3924(99)00092-5
更新日期：1999-12-01 00:00:00
abstract：:Diarrhea is a distressing symptom that limits the quality of life in terminally ill patients. In these patients, many factors can affect intestinal secretion, absorption, and motility, including drugs, infective agents, antibiotics, chemotherapy, radiotherapy, surgery, malnutrition, neuroendocrine tumors, and mechanic...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
doi：10.1016/0885-3924(95)00007-L
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abstract：:Good policies lay the groundwork for an effective health care system and society. They facilitate the implementation of palliative care programs aimed at providing care for all people in need of these services, and they ensure equitable access to affordable medications and therapies. The lack of good policies can lead...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
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abstract：:Latin America consumes less than 2.7% of the morphine in the world, as reported by the governments to the International Narcotics Control Board. Methods to improve access to opioids for the treatment of pain have been developed by the Pain & Policy Studies Group (PPSG), a World Health Organization Collaborating Center...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2009.03.007
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abstract：:The relationships between plasma morphine and metabolite (M3G and M6G) concentrations and analgesic efficacy were investigated in an open study of 39 cancer pain patients receiving chronic oral morphine therapy with either morphine sulfate solution or controlled-release morphine tablets. There were no differences in m...
journal_title：Journal of pain and symptom management
pub_type： 临床试验,杂志文章
doi：10.1016/0885-3924(95)00148-4
更新日期：1996-02-01 00:00:00
abstract：CONTEXT:Symptom management is essential in the end-of-life care of long-term care facility residents. OBJECTIVES:To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. METHODS:A postmortem survey in Belgium, The Netherlands,...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2020.03.002
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abstract：:Potential iatrogenic mood and cognitive declines associated with long-acting opioid therapy were examined in 19 patients receiving long-acting oral opioid medications and compared to ten patients receiving usual care. Pain, mood, and cognitive function were measured before and after achieving stable doses. In addition...
journal_title：Journal of pain and symptom management
pub_type： 临床试验,杂志文章
doi：10.1016/s0885-3924(97)00352-7
更新日期：1998-03-01 00:00:00
abstract：:There is little objective data on how cancer and its therapy affect physical activity. The main aims of this pilot study were 1) to compare physical activity in patients receiving palliative chemotherapy and healthy controls, and 2) to explore the relationship between patients' activity, quality of life (QoL), and cli...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2006.09.024
更新日期：2007-06-01 00:00:00
abstract：CONTEXT:Aggregates of concurrent symptoms, known as symptom clusters (SxCls), have been described in predominantly cross-sectional samples of lung cancer (LC) patients undergoing treatment. OBJECTIVES:The objective of this study was to delineate SxCls in LC survivors up to five years after diagnosis, investigate their...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2010.10.257
更新日期：2011-08-01 00:00:00
abstract：:Pain is a multidimensional phenomenon with physical, psychological, and social components and is a significant problem for 50% of hemodialysis (HD) patients. Failure to treat pain adequately may lead to disruption in many aspects of life. This study examines the relationship between moderate to severe chronic pain and...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2005.05.013
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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/j.jpainsymman.2004.08.018
更新日期：2005-05-01 00:00:00
abstract：:Although multidimensional instruments are usually used to measure quality of life in advanced cancer patients, recent research suggests that single-item assessments can provide a reliable measure. Using the Functional Assessment of Cancer Therapy-General (FACT-G) instrument as a gold standard, we assessed the performa...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2009.08.006
更新日期：2010-03-01 00:00:00
abstract：CONTEXT:Patients with lung cancer who undergo chemotherapy (CTX) experience multiple symptoms. Evaluation of how these symptoms cluster together and how these symptom clusters change over time are salient questions in symptom clusters research. OBJECTIVES:The purposes of this analysis, in a sample of patients with lun...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2019.02.002
更新日期：2019-05-01 00:00:00
abstract：CONTEXT:Supplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate. OBJECTIVES:To identify stakeholder perceptions of key outcom...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章,评审
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更新日期：2020-08-01 00:00:00
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2010.05.016
更新日期：2011-02-01 00:00:00
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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.2010.01.013
更新日期：2010-08-01 00:00:00
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2006.05.024
更新日期：2006-12-01 00:00:00
abstract：CONTEXT:Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. OBJECTIVES:To identify key factors affecting PC development in African countries from in-country PC experts' perspectives. METHODS:About 16 PC experts from seven Afric...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章
doi：10.1016/j.jpainsymman.2017.05.013
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journal_title：Journal of pain and symptom management
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journal_title：Journal of pain and symptom management
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doi：10.1016/j.jpainsymman.2011.01.009
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章,多中心研究,随机对照试验
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章
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更新日期：2018-08-01 00:00:00
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journal_title：Journal of pain and symptom management
pub_type： 临床试验,杂志文章
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章,meta分析,评审
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更新日期：2017-08-01 00:00:00
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章,多中心研究,随机对照试验
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journal_title：Journal of pain and symptom management
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journal_title：Journal of pain and symptom management
pub_type： 杂志文章
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更新日期：2003-04-01 00:00:00
abstract：CONTEXT:One palliative care approach that is increasingly being used at home for relieving intolerable suffering in terminally ill patients is continuous sedation until death. Its provision requires a multidisciplinary team approach, with adequate collaboration and communication. However, it is unknown how general prac...
journal_title：Journal of pain and symptom management
pub_type： 杂志文章
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journal_title：Journal of pain and symptom management
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