Abstract:
OBJECTIVE:To compare healthcare professionals' assessment of the quality of life of spinal muscular atrophy type 1 children with that of the care providers for the children. DESIGN:The care providers of all 53 surviving spinal muscular atrophy type 1 children managed in one neuromuscular disease clinic were sent Likert-scale surveys of six quality of life issues and ten polar-adjective pairs. The quality of life estimations were compared with those of 67 clinicians and with those of 30 parents considering their unaffected children. RESULTS:One hundred care providers from 46 out of the 53 families (87%) responded. Although the clinicians' mean estimate of the children's quality of life was 2.85 +/- 0.2/10, the care providers' estimate was 7.81 +/- 0.2/10 (P < 0.0001). The care providers also found life with the children to be satisfying (6.0 +/- 0.2/7), interesting (6.6 +/- 0.1/7), friendly (6.1 +/- 0.1/7), enjoyable (6.3 +/- 0.1/7), worthwhile (6.7 +/- 0.1/7), full (6.6 +/- 0.1/7), hopeful (5.9 +/- 0.2/7), and rewarding (6.4 +/- 0.1/7), and they estimated the children to be happy (8.5 +/- 0.2/10) and their lives worth living (9.6 +/- 0.1/10). However, 69 of 104 felt that their lives were hard rather than easy, and 56 of 104 reported feeling tied down rather than free. Although the effort they felt for raising the child was high (8.3 +/- 0.3 by comparison with 5 for an unaffected child), the burden they felt in doing so was not (5.8 +/- 0.3/5). When asked whether they would or would not recommend ventilator use, 31 clinicians (45.5%) indicated they would, 24 (36.4%) would not, and 12 (18.2%) chose not to respond to this question. Care provider responses did not differ significantly from the responses of the parents of unaffected children except for the easy/hard semantic differential (care providers, 3.80 +/- 1.75 controls, 5.27 +/- 1.14, < 0.001). CONCLUSIONS:Although there is a widespread perception that spinal muscular atrophy type 1 children have a poor quality of life, this perception is not shared by their care providers.
journal_name
Am J Phys Med Rehabiljournal_title
American journal of physical medicine & rehabilitationauthors
Bach JR,Vega J,Majors J,Friedman Adoi
10.1097/00002060-200302000-00009subject
Has Abstractpub_date
2003-02-01 00:00:00pages
137-42issue
2eissn
0894-9115issn
1537-7385pii
00002060-200302000-00009journal_volume
82pub_type
杂志文章abstract::Complex regional pain syndrome has both nociceptive/inflammatory and neuropathic elements and is always (by definition) associated with abnormal activity of the sympathetic nervous system. There is good evidence that complex regional pain syndrome, as currently conceptualized, ultimately includes central sensitization...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,评审
doi:
更新日期:2005-03-01 00:00:00
abstract:OBJECTIVE:To investigate the effect of the placement of a plate under the sole of the forefoot on the excitability of the soleus motoneuron pool in stance. DESIGN:While eight neurologically intact subjects remained in stance, a square plate (30 x 30 mm), either 3 mm or 6 mm in thickness, was placed under the left medi...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1097/01.PHM.0000087454.19029.7E
更新日期:2003-11-01 00:00:00
abstract::We carried out a prospective study to determine the association between immobilization in the immediate postinjury period and the development of pressure ulcers in spinal cord-injured patients following their admission to Charity Hospital, New Orleans. Of 39 patients consecutively admitted to the hospital, 23 (59%) de...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/00002060-198806000-00007
更新日期:1988-06-01 00:00:00
abstract:OBJECTIVE:The aim of this study was to systematically review the efficacy and safety of exercise in patients with amyotrophic lateral sclerosis (ALS). DESIGN:Randomized controlled trials of exercises for ALS were searched in PubMed, EMBASE, Web of Science, Cochrane Library, China Biology Medicine database, China Natio...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,meta分析
doi:10.1097/PHM.0000000000001419
更新日期:2020-09-01 00:00:00
abstract:OBJECTIVE:To investigate whether there is a difference in functional improvement in the affected arm of chronic stroke patients when comparing two methods of electrical stimulation. DESIGN:Explanatory trial in which 30 chronic stroke patients with impaired arm function were randomly allocated to either alternating ele...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 临床试验,杂志文章,多中心研究,随机对照试验
doi:10.1097/01.phm.0000133435.61610.55
更新日期:2004-08-01 00:00:00
abstract::Cognitive deficits are a common consequence of traumatic brain injury. Although such deficits are amenable to rehabilitation, methods for individualizing cognitive interventions are still unrefined. Functional neuroimaging methods such as positron emission tomography and functional magnetic resonance imaging are emerg...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,评审
doi:10.1097/01.phm.0000150787.26860.12
更新日期:2005-01-01 00:00:00
abstract:OBJECTIVE:The 6-min walk test (6mWT) is widely used to assess physical performance in cardiac rehabilitation settings. Factors affecting the walked distance before starting physical training have been described, whereas information on factors affecting the increase of the walked distance after physical training is stil...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/PHM.0b013e31815e67d8
更新日期:2008-01-01 00:00:00
abstract:OBJECTIVE:The aim of the study was to compare changes in the concentration of serum biomarkers in response to continuous versus interval walking exercise in participants with knee osteoarthritis. DESIGN:This study used a two-phase sequential design. Twenty-seven participants with unilateral knee osteoarthritis complet...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 临床试验,杂志文章
doi:10.1097/PHM.0000000000001068
更新日期:2019-04-01 00:00:00
abstract::Rats pretrained to walk a narrow balance beam received unilateral sensorimotor cortex lesions, resulting in a contralateral transient paresis that lasted 14 days. In a dose-dependent manner, a single injection of the antidepressant trazodone given 24 hours after injury transiently slowed motor recovery compared with i...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/00002060-199310000-00007
更新日期:1993-10-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/PHM.0000000000000782
更新日期:2017-12-01 00:00:00
abstract::Intrathecal baclofen withdrawal syndrome is a known complication of intrathecal baclofen pumps. Its origin is postulated as an independent form of a serotonergic syndrome occurring from loss of gamma-aminobutyric acid B receptor-mediated inhibition of serotonin. Prodromal symptoms include pruritus, a return of deep te...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/PHM.0b013e31815b5c58
更新日期:2007-12-01 00:00:00
abstract::There are basic principles and techniques of measurement that are relevant across biomedical disciplines. The purpose of this article is to explain some of the most important of these for medical rehabilitation, to illustrate how to use them to choose assessment instruments and to describe the nature of measurement in...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/00002060-199102000-00008
更新日期:1991-02-01 00:00:00
abstract::A 41-yr-old woman with hoarseness, multiple joint pain, and generalized myalgia was diagnosed with systemic lupus erythematosus (SLE) 7 mos before visiting our clinic. SLE-related vocal cord palsy of the left side was identified after otolaryngologic evaluation. We performed laryngeal electromyography (LEMG) on both c...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/PHM.0b013e31815b669e
更新日期:2008-01-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,meta分析
doi:10.1097/PHM.0000000000001247
更新日期:2019-10-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/PHM.0000000000001299
更新日期:2019-12-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1097/00002060-200211000-00001
更新日期:2002-11-01 00:00:00
abstract::Functional independence measure (FIM) scores are frequently used as if the various sections are of equal importance and as if the interval between each score is equal. We tested this hypothesis by using marketing research techniques to assess the value to rehabilitation nurses and therapists of four of the six section...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:
更新日期:1994-02-01 00:00:00
abstract::In this retrospective, consecutive case series, we report the nonsurgical and rehabilitation outcomes of consecutive patients who presented with pronounced painless weakness arising from disk extrusion. Seven consecutive patients who chose physiatric care were followed clinically, and strength return was monitored. Ea...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/01.phm.0000167616.30854.16
更新日期:2005-07-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,随机对照试验
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
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abstract::Abnormality of absolute values of median sensory conduction velocities and differences in conduction velocity between median and ulnar nerves are used as criteria for abnormality in the diagnosis of carpal tunnel syndrome. Detailed studies of sensory conduction in various median and ulnar branches and segments indicat...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/00002060-198910000-00002
更新日期:1989-10-01 00:00:00
abstract::Despite frequent muscle strength or muscle oxidative capacity (based on exercise-onset oxygen uptake [VO2] kinetics) assessments in patients with multiple sclerosis, the impact of time of day on these parameters is often not taken into account. Based on observations in healthy subjects, it remains to be studied whethe...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/PHM.0000000000000703
更新日期:2017-11-01 00:00:00
abstract:OBJECTIVE:This study aimed to assess the effects of single and multiple massage treatments on pressure-pain threshold (PPT) at myofascial trigger points (MTrPs) in people with myofascial pain syndrome expressed as tension-type headache. DESIGN:Individuals (n = 62) with episodic or chronic tension-type headache were ra...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,随机对照试验
doi:10.1097/PHM.0000000000000728
更新日期:2017-09-01 00:00:00
abstract:OBJECTIVE:Respiratory management of patients with end-stage respiratory muscle failure of neuromuscular disease has evolved from no treatment and inevitable respiratory failure to the use of up to continuous noninvasive intermittent positive pressure ventilatory support (CNVS) to avert respiratory failure and to permit...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,评审
doi:10.1097/PHM.0b013e31826edcf1
更新日期:2013-03-01 00:00:00
abstract::Functional tests are commonly used to evaluate the functional ability of older individuals; however, intraday reliability and sensitivity are required to enable informed decisions on whether repeated trials are necessary and to ensure that the values obtained from a single session are a patient's true score. This stud...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,随机对照试验
doi:10.1097/PHM.0000000000000078
更新日期:2014-08-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章,评审
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更新日期:2013-04-01 00:00:00
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journal_title:American journal of physical medicine & rehabilitation
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更新日期:2010-10-01 00:00:00
abstract::This study explores the "higher order" cognitive abilities of conceptual reasoning, problem solving, mental flexibility, and efficiency in 36 adolescents with spina bifida. The subjects, age 10 to 23 years, were assessed on a set of neuropsychological measures, and an individual profile analysis was conducted. All sub...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/00002060-199805000-00011
更新日期:1998-05-01 00:00:00
abstract::We have analyzed the history of institutional fractures in 153 men, age 48 to 96, 86% white, who had resided in this VA nursing home for an average of 6.3 years as of August 1984. At that time, we reviewed their medical charts to record the numbers and sites of fractures which had been diagnosed during the preceding 1...
journal_title:American journal of physical medicine & rehabilitation
pub_type: 杂志文章
doi:10.1097/00002060-198902000-00002
更新日期:1989-02-01 00:00:00