Abstract:
OBJECTIVES:To continuously assess overall quality of life (QOL) and disease progression in patients with amyotrophic lateral sclerosis (ALS) at different stages of the disease and compare the results between these two variables. DESIGN/SUBJECTS:Twenty-six patients with ALS were interviewed with a questionnaire to assess their QOL from 0 to 10, where 10 is the highest QOL and questions concerning physical function, psychological status, and civil status. Their disease progression was estimated by ALS Functioning Rating Scale (ALS FRS). Nine patients were interviewed only once and 17 patients were interviewed 2-7 times. The interviews were repeated every second visit (range, 4-7 months). All values were ranked and linear regression was used to calculate the slope of QOL and ALS FRS. RESULTS:The mean QOL value for all 26 patients was 5.8 (0-10-point scale). For the 17 patients interviewed 2-7 times, which correspond to a follow-up period of 5-28 months, there was no significant change in QOL-value (p = 0.247) among the interviews despite a significant disease progression (p = 0.0001). CONCLUSION:It can be concluded that ALS does not necessarily result in a low overall QOL and that despite disease progression overall QOL changes only slightly over time.
journal_name
J Palliat Medjournal_title
Journal of palliative medicineauthors
Nygren I,Askmark Hdoi
10.1089/jpm.2006.9.304subject
Has Abstractpub_date
2006-04-01 00:00:00pages
304-8issue
2eissn
1096-6218issn
1557-7740journal_volume
9pub_type
杂志文章abstract::Methadone use as a second-line agent for severe cancer-related pain is increasing in the field of hospice and palliative care. It has a number of qualities that make its use favorable, including lack of known active metabolites and presumed relative safety from adverse effects such as opioid-induced neurotoxicity (OIN...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2016.0502
更新日期:2017-09-01 00:00:00
abstract:INTRODUCTION:Spiritual needs play an important role in palliative care as both a clinical dimension and a therapeutic strategy. However, recent studies have shown that the management of this dimension still remains a challenge at the clinical level of palliative care. GOALS:Our goal was to evaluate the spiritual needs...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0569
更新日期:2014-05-01 00:00:00
abstract:BACKGROUND:Prognostication plays a key role in palliative care (PC). It is critical for advance care planning, determining hospice eligibility, and communication. In contrast to subjective clinical prognostication, evidence-based prognostication (EBP) uses existing validated data to quantify prognosis; however, the ext...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2014.0331
更新日期:2015-04-01 00:00:00
abstract::Palliative care consultation has been demonstrated to be useful in many situations in which expert symptom management, communication around sensitive issues, and family support may serve to enhance or improve care. The process of organ donation is an example of this concept, specifically the process of donation after ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2006.0118
更新日期:2007-02-01 00:00:00
abstract::Hospice Uganda was established in Kampala, September 27, 1993. Since then the hospice has served over 3,000 patients with cancer, and referrals of patients with HIV/AIDS are increasing steadily. The concepts of hospice and palliative care are well accepted in Uganda, but the delivery of services has been severely cons...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/10966210252785141
更新日期:2002-02-01 00:00:00
abstract:BACKGROUND:After prenatal diagnosis of lethal fetal abnormality (LFA), some couples choose to continue the pregnancy rather than opt for termination of the pregnancy. This may result in the requirement for neonatal palliative care, which in France is prescribed by the Leonetti Law. These rare situations raise various q...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1089/jpm.2014.0023
更新日期:2014-08-01 00:00:00
abstract:: Background: Methadone may play a role in the control of refractory cancer pain in opioid switching, although some cases fail to switch to methadone. Objective: To evaluate the differences in the clinical aspects in switching to...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0490
更新日期:2019-07-01 00:00:00
abstract:: Background: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western st...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2018.0304
更新日期:2019-07-01 00:00:00
abstract::As new accreditation standards for health professions education increasingly require end-of-life (EOL) curriculum and performance-based assessment, health professions educators struggle to shift through the educational literature to find core principles, practical strategies, emerging trends, and on-line resources to ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662101750290263
更新日期:2001-07-01 00:00:00
abstract::Achieving the best quality of life for patients and their families when a disease becomes progressive and no longer remains responsive to curative therapy is the primary goal of palliative care. A comprehensive care plan focusing on control of physical symptoms as well as psychological, social, and spiritual issues th...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2006.9.391
更新日期:2006-04-01 00:00:00
abstract::For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0301
更新日期:2019-04-01 00:00:00
abstract:BACKGROUND:Empirical research suggests that the quality of patient care at the end of life (EOL) is influenced by the effectiveness of the collaboration between the general practitioners (GPs) and hospital physicians (HPs). AIM:To identify possible difficulties and barriers to effective collaboration at the EOL betwee...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2015.0377
更新日期:2016-09-01 00:00:00
abstract:BACKGROUND:Cancer and its treatment can significantly affect appearance and body integrity. A number of studies have explored the impact of cancer and its treatment on body image, primarily in head and neck and breast cancer. The aim of this pilot study was to examine the construct of body image dissatisfaction and its...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0588
更新日期:2015-02-01 00:00:00
abstract:PURPOSE:Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services. METHODS:A population-based analysis of caregivers was performed from pilote...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2010.0004
更新日期:2010-10-01 00:00:00
abstract:: Background: Involvement of the palliative care service has potential for patient and family benefit in critically ill patients, regardless of etiology. Anecdotally, there is a lack of involvement of the palliative care (PC) service in the neuro-intensive care unit (neuro-I...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0428
更新日期:2019-05-01 00:00:00
abstract:: Background: Futile or potentially inappropriate care (futile/PIC) for dying inpatients leads to negative outcomes for patients and clinicians. In the setting of rising end-of-life health care costs and increasing physician burnout, it is important to understand the causes ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0385
更新日期:2019-09-01 00:00:00
abstract:INTRODUCTION:Place of death is considered a quality indicator of end-of-life care and enabling people to die where they choose is an important aspiration of palliative care. This study aims to examine the association between involvement of palliative care services and place of death. METHODS:Data about patient charact...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2010.0279
更新日期:2010-12-01 00:00:00
abstract:BACKGROUND:Palliative chemotherapy is often administered to terminally ill cancer patients to relieve symptoms. Yet, unnecessary use of chemotherapy can worsen patients' quality of life due to treatment-related toxicities. Thus, accurate prediction of survival in terminally ill patients can help clinicians decide on th...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2011.0417
更新日期:2012-08-01 00:00:00
abstract:: Background: Patients with pulmonary hypertension (PH) experience distressing symptoms that can undermine quality of life (QoL) and treatment adherence. Complementary health approaches are known to help manage symptoms of chronic conditions and may have therapeutic benefits...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0359
更新日期:2020-05-01 00:00:00
abstract:BACKGROUND:In 2011 the Palliative Care Funding Review highlighted concerns about the funding, provision, and quality of care at the end of life. Two years on, an independent review of the Liverpool Care Pathway--prompted by a storm of negative media coverage--has raised concerns around a lack of funding, availability o...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0464
更新日期:2013-12-01 00:00:00
abstract::Approximately 21 million noninstitutionalized Americans with physical disabilities will ultimately face end-of-life [EOL] issues. Studies have documented disparate care and poorer outcomes for persons with preexisting disabilities who have life-limiting illnesses, which raises the question of how EOL experiences may d...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2011.0506
更新日期:2012-06-01 00:00:00
abstract:BACKGROUND:Relief of distressful symptoms in terminally ill patients with cancer is of prime importance. Use of sedation to accomplish this has been the focus of recent medical studies in countries other than Japan. We investigated the influence on consciousness of sedative drugs in a Japanese hospice. DESIGN AND SUBJ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2005.8.20
更新日期:2005-02-01 00:00:00
abstract::Sociodrama is a powerful teaching strategy that combines a case study approach with traditional role-play methodology to illustrate critical issues in end-of-life care. Building on principles of adult learning and communication skills, the sociodrama method enables the skilled facilitator to draw on the learner's past...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662101753124039
更新日期:2001-10-01 00:00:00
abstract::Central pain syndromes are a complex, diverse group of clinical conditions that are poorly understood. We present a patient with progressive, debilitating central pain and co-existing mood disorders that was refractory to multimodal pharmacologic and nonpharmacologic therapies, but that ultimately responded to electro...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2017.0344
更新日期:2018-02-01 00:00:00
abstract:BACKGROUND:Surgical patients most commonly receive palliative care services within 24-48 hours of death, and reasons for this delay are poorly understood. Research with nonsurgeons suggests that physician characteristics and beliefs about death and dying may contribute to late referral. OBJECTIVE:To describe surgeon p...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0197
更新日期:2019-02-01 00:00:00
abstract:BACKGROUND:There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. OBJECTIVE:Our aim was to review advance care planning for children with l...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0374
更新日期:2014-09-01 00:00:00
abstract:BACKGROUND:Little is currently known about physicians': (1) level of involvement in and comfort delivering palliative care in the inpatient setting, (2) perceived barriers to referring patients to an inpatient Palliative Care Consult Service (PCCS), and (3) attitudes regarding palliative care. METHODS:Eligible partici...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2009.9656
更新日期:2009-03-01 00:00:00
abstract::Hypercalcemia of malignancy affects 2%-2.8% of cancer patients and is associated with an increased risk of mortality and other symptom-related complications. Standard treatment consists of fluid resuscitation, intravenous bisphosphonates, and calcitonin. Little is known, however, about the benefits of treatment of mal...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2019.0343
更新日期:2020-06-01 00:00:00
abstract:BACKGROUND:Improving access to palliative care is an important priority for hospitals as they strive to provide the best care and quality of life for their patients. Even in hospitals with longstanding palliative care programs, only a small proportion of patients with life-threatening illnesses receive palliative care ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1089/jpm.2011.0301
更新日期:2012-02-01 00:00:00
abstract:BACKGROUND:The evidence base to support palliative care clinical practice is inadequate and opportunities to improve the palliative care evidence base remain despite the field's rapid growth. OBJECTIVE:To examine current NIH funding of palliative medicine research, changes since our 2013 report, and trends since our 2...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2017.0287
更新日期:2018-02-01 00:00:00