Abstract:
:Current definitions of "symptom burden" are largely derived from clinicians, and there are many variations in the way the term is used, defined, and operationalized. The aim of this study was to explore patient perceptions of symptom burden in the context of advanced and incurable disease. A group of 58 cancer patients followed by a palliative care team answered a single open-ended question: "Please define 'symptom burden'". Three authors independently coded and analyzed patient responses using a grounded theory approach. They identified six themes, the most frequently coded of which were: "can't do usual activities", "psychological suffering" and "specific severe symptoms". Our findings indicate that the concept of symptom burden is complex and extends beyond numerical symptom-scoring systems. In addition to inquiring about specific symptoms, it may be important to directly ask patients about their overall burden or experience of symptoms.
journal_name
J Palliat Carejournal_title
Journal of palliative careauthors
Gill A,Chakraborty A,Selby Dsubject
Has Abstractpub_date
2012-07-01 00:00:00pages
83-9issue
2eissn
0825-8597issn
2369-5293journal_volume
28pub_type
杂志文章abstract::This paper presents an overview of a qualitative study of six recently discharged hospice patients, who had experienced at least two episodes of inpatient palliative care and who were interviewed about their experience of care. The resulting data formed a representation--the Circle of Care--with a central theme being ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2001-04-01 00:00:00
abstract:AIM:The aim of this study was to evaluate the utility of the Edmonton Symptom Assessment System (ESAS-r) Scale on a tertiary palliative care unit. METHOD:There were 92 admitted patients who participated in the study; the scale was administered to those able to participate on day 1 (n = 35, 38 percent), on day 4 (n = 2...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/082585971503100107
更新日期:2015-01-01 00:00:00
abstract:AIM:The aim of this study was to characterize the attitudes of older adults on an inpatient palliative care unit toward complementary and alternative medicine (CAM) therapies. METHODS:A consecutive sample of 33 inpatients (61 to 98 years old) completed a questionnaire that examined their attitudes toward CAM to determ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2013-01-01 00:00:00
abstract::Although the consequences of prolonged lying on a hard surface are as old as the human race, publications on this subject are scarce. This is due to the fact that a decubitus ulcer never occurs in isolation but is nearly always a complication of some other condition. The term "decubitus" was already used by Hildnaus i...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1992-07-01 00:00:00
abstract::Informal hospice caregivers play a key role in managing patients' pain at home, but lack of adherence to doctor-prescribed analgesic regimens and medication errors are significant barriers to truly effective pain management. A digital pain diary may improve caregiver management of pain at home; however, most digital p...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859717722466
更新日期:2017-04-01 00:00:00
abstract:BACKGROUND:Despite the central role of hospice in end-of-life care, little is known about the proportion of terminally ill patients referred for hospice and the physician factors associated with hospice referral. METHODS:Cross-sectional data from a self-administered survey of 231 physicians were used to estimate the p...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2000-01-01 00:00:00
abstract:BACKGROUND::Following the Supreme Court of Canada's Carter Decision, medical assistance in dying (MAID) became possible with individual court orders in February 2016. Subsequently, on June 17, 2016, legislation was passed that eliminated the need for court orders, essentially making physicians the arbiters of these req...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718812446
更新日期:2019-04-01 00:00:00
abstract:OBJECTIVES:Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families. DESIGN:Thirty semi-structured interviews with qualitative content analysis...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859719845005
更新日期:2020-01-01 00:00:00
abstract:INTRODUCTION:Health system restructuring combined with the preferences of many terminally ill care recipients and their caregivers has led to an increase in home-based palliative care, yet many care recipients die within institutional settings such as hospitals. This study sought to determine the place of death and its...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2010-01-01 00:00:00
abstract::This multi-centre study of adjuvant "burst" ketamine in palliative care in-patients documents its effectiveness, duration of pain relief, and adverse effects (AE) profile. Patients received a three-to-five day continuous subcutaneous infusion (CSCI) of ketamine escalated from 100 to 300 to 500 mg/24 hours if required....
journal_title:Journal of palliative care
pub_type: 临床试验,杂志文章,多中心研究
doi:
更新日期:2010-10-01 00:00:00
abstract:BACKGROUND:Bleeding occurs with some regularity at the end of life. Patients often endure fatigue, weakness, pain, dyspnea and anxiety. These symptoms are magnified in visually apparent bleeds. Management can be particularly challenging as we attempt to balance therapies with goals of care. Children are at risk for suc...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859719883844
更新日期:2020-04-01 00:00:00
abstract::A strong and often polarized debate has taken place during recent years concerning the consequences of dehydration in the terminally ill patient. When a patient has a severely restricted oral intake or is found to be dehydrated, the decision to administer fluids should be individualized and made on the basis of a care...
journal_title:Journal of palliative care
pub_type: 杂志文章,评审
doi:
更新日期:1998-07-01 00:00:00
abstract::Inpatient palliative care consultation has been demonstrated to improve quality of life as well as decrease hospital readmissions, intensive care unit transfers, and hospital costs for people with a life limiting illness. The clinical teaching units (CTUs) at London Health Sciences Centre (LHSC) routinely admit patien...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718781363
更新日期:2018-10-01 00:00:00
abstract::When dying patients are young adults or have a contagious disease, nursing staff may feel acutely uncomfortable and the patients may become isolated and alone. Nurses who work in palliative care units (PCU) develop special interactive skills that are generally acknowledged but not clearly defined or understood. Admiss...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1991-04-01 00:00:00
abstract::The emphasis of palliative care has been to support both patients and their family caregivers, and to maintain the caregivers' involvement through the patient's illness and death. This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a simila...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2001-01-01 00:00:00
abstract::This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers' assessment of support. Ninety-six informal carers of patients referred to HAH were sur...
journal_title:Journal of palliative care
pub_type: 临床试验,杂志文章,随机对照试验
doi:
更新日期:2004-07-01 00:00:00
abstract:AIM:By examining clinical parameters associated with survival time and analyzing patients' survival times using prognostic scores, this study aimed to provide helpful information related to the treatment of terminal cancer patients. METHODS:We retrospectively reviewed the medical records of 415 inpatients who died in ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2014-04-01 00:00:00
abstract::Caregivers are often overwhelmed by the strain of terminal caregiving. We wished to better understand the needs of terminal caregivers and to supply a basis for tailoring interventions to them during caregiving and early bereavement. This report provides a profile of 124 bereaved caregivers interviewed within three mo...
journal_title:Journal of palliative care
pub_type: 杂志文章,多中心研究
doi:
更新日期:1999-04-01 00:00:00
abstract::Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality and disability worldwide. For many patients, maximal therapy for COPD produces only modest relief of disabling symptoms and these symptoms result in a significantly reduced quality of life. Despite the high morbidity and mortality, patients w...
journal_title:Journal of palliative care
pub_type: 杂志文章,评审
doi:
更新日期:2005-10-01 00:00:00
abstract::Comfort care for cancer patients in the terminal stage has been the goal of hospice programs since their inception. Among the many treatment modalities available to homebound patients, transfusions have been little studied for their effects on advanced disease symptoms, particularly for those in the terminal phase. Ou...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1993-10-01 00:00:00
abstract:BACKGROUND:Patients with advanced chronic obstructive pulmonary disease (COPD) have a significant symptom burden despite maximal medical therapy, yet few are referred for concomitant palliative care. OBJECTIVE:To evaluate the utilization and impact of palliative care on the location of death and to identify clinical v...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859719851486
更新日期:2019-07-02 00:00:00
abstract:BACKGROUND:There is a growing movement to increase palliative care consults from the emergency department (ED) to reduce healthcare costs and improve quality of life. The surprise question is a screening tool that emergency medicine physicians may be able to use towards achieving this goal. OBJECTIVE:The objectives of...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859719866698
更新日期:2020-10-01 00:00:00
abstract::Morphine and hydromorphone infusions of 6 or more (average 25.75) days in duration were used with increasing frequency (up to 7%) by our oncology inpatients. Eighty-six percent of the 135 inpatients we reviewed realized good pain control with dose rates up to 700 morphine-equivalent (ME) mg/h. Local toxicity occurred ...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1990-07-01 00:00:00
abstract::In traditional Chinese culture, death was sensitive and mentioning it was sacrilegious and to be avoided. Many Chinese families object to telling the patient a "bad" diagnosis or prognosis, which may hinder the chance in advance care planning (ACP) discussion. While death remains an inevitable consequence of being bor...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718763644
更新日期:2018-10-01 00:00:00
abstract:OBJECTIVE:This study aimed to characterize the strategies and psychosocial conditions that influence how resilient people live in the face of advanced cancer. METHODS:Grounded theory interviews and a survey of 10 resilient people with advanced cancer were collected and analyzed. FINDINGS:Personal assets - including p...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2013-07-01 00:00:00
abstract::Professional caregivers for cancer patients are at high risk for work-related stress, but it is not clear how this relates to exposure to death and dying, and to professional satisfaction. This study compares work-related stress and staff satisfaction on an academic acute palliative care unit (PCU) with that on a medi...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2007-04-01 00:00:00
abstract:BACKGROUND:The Patient Self-Determination Act (PSDA) requires hospitals, home health agencies, nursing homes, and hospice providers to offer new patients information about advance directives. There is little evidence regarding whether encounters with these health-care providers prompt advance directive completion by pa...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/0825859718769099
更新日期:2018-07-01 00:00:00
abstract::The Regional Palliative Care Unit in Ottawa conducted a retrospective study to determine how satisfied patients and families were with the service the Unit offers. Forty-five primary care providers, bereaved from 6 to 12 months, completed the 64-item semistructured telephone interview in a mean time of 20 minutes. The...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:1992-01-01 00:00:00
abstract:BACKGROUND:One challenge for those who manage amyotrophic lateral sclerosis (ALS) is to understand patients' needs. AIM:The aim of this study was to examine the needs of Singapore ALS patients from their perspective as well as that of their caregivers and healthcare professionals in order to develop a template for bet...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:10.1177/082585971503100304
更新日期:2015-01-01 00:00:00
abstract::This study measures the proportion of cancer patients in Ontario, Canada, with intensive care unit (ICU) admissions, emergency room (ER) visits, or chemotherapy in the last two weeks of life. We used the Ontario Cancer Registry to identify a cohort of cancer patients who died in 2001. These cases were then linked to a...
journal_title:Journal of palliative care
pub_type: 杂志文章
doi:
更新日期:2006-04-01 00:00:00