13 research outputs found

    Quality of Life and Menopause in Women with Physical Disabilities

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    Objective: The goal of this cross-sectional study was to explore quality of life (QOL) in a sample of postmenopausal women with physical disabilities due to polio contracted in childhood. A structural equation model was used to confirm that menopause symptoms will have a minimal effect on QOL when disability-related variables are taken into account. Methods: A sample of 752 women who were postmenopausal completed a written survey. The structural equation model contained two measured predictors (age, severity of postpolio sequelae) and one latent predictor (menopause symptoms defined by four measured indicators). Functional status (defined by two measured indicators) was included as a mediator, with QOL (defined by three measured indicators) as the outcome. Results: The original model yielded acceptable fit indices (CFI = 0.96, RMSEA = 0.055) but resulted in a number of unexpected relationships that proved to be artifacts after model respecification. The respecified model yielded a nonsignificant chi-square value, which indicated no significant discrepancy between the proposed model and the observed data (chisquare = 18.5, dƒ = 13, p = 0.138). All fit indices indicated a good fit: CFI = 0.997, NNFI = 0.987, chi-square/dƒ = 1.43, and RMSEA = 0.024. Conclusions: When the effects of postpolio sequelae and functional status are included in the structural equation model, only the psychological symptoms of menopause play a prominent role in explaining QOL in this sample. The clinical implications of these findings suggest that attention to psychological symptoms and an exclusive focus on the physical aspects of menopause to the exclusion of other midlife life stressors and influences on a woman’s psychological well-being ignore the larger context of life in which they live. In particular, many women with disabilities may contend with additional or exacerbated stressors related to their disability.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/63153/1/jwh.2006.15.1014.pd

    Health status in non-dystrophic myotonias: close relation with pain and fatigue

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    To determine self-reported health status in non-dystrophic myotonias (NDM) and its relationship to painful myotonia and fatigue. In a cross-sectional study, 32 NDM patients with chloride and 30 with sodium channelopathies, all off treatment, completed a standardised interview, the fatigue assessment scale (FAS), and the 36-item Short-Form Health Survey (SF-36). Beside formal assessment of pain, assessment of painful or painless myotonia was determined. The domain scores of the SF-36 were compared with Dutch community scores. Apart from the relationship among SF-36 scores and (1) painful myotonia and (2) fatigue, regression analyses in both NDM groups were conducted to determine the strongest determinants of the SF-36 domains general health perception, physical component (PCS) and mental component summary (MCS). All physically oriented SF-36 domains in both NDM groups (P ≤ 0.01) and social functioning in the patients with sodium channelopathies (P = 0.048) were substantially lower relative to the Dutch community scores. The patients with painful myotonia (41.9%) scored substantially (P < 0.05) lower on most SF-36 domains than the patients without painful myotonia (58.1%). Fatigued patients (53.2%) scored substantially lower (P ≤ 0.01) on all SF-36 domains than their non-fatigued counterparts (46.8%). The regression analysis showed that fatigue was the strongest predictor for the general-health perception and painful myotonia for the physical-component summary. None of the patients showed below-norm scores on the domain mental-component summary. The impact of NDM on the physical domains of patients’ health status is substantial, and particularly painful myotonia and fatigue tend to impede their physical functioning

    Exercise therapy and cognitive behavioural therapy to improve fatigue, daily activity performance and quality of life in Postpoliomyelitis Syndrome: the protocol of the FACTS-2-PPS trial

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    Contains fulltext : 88661.pdf (publisher's version ) (Open Access)BACKGROUND: Postpoliomyelitis Syndrome (PPS) is a complex of late onset neuromuscular symptoms with new or increased muscle weakness and muscle fatigability as key symptoms. Main clinical complaints are severe fatigue, deterioration in functional abilities and health related quality of life. Rehabilitation management is the mainstay of treatment. Two different therapeutic interventions may be prescribed (1) exercise therapy or (2) cognitive behavioural therapy (CBT). However, the evidence on the effectiveness of both interventions is limited. The primary aim of the FACTS-2-PPS trial is to study the efficacy of exercise therapy and CBT for reducing fatigue and improving activities and quality of life in patients with PPS. Additionally, the working mechanisms, patients' and therapists' expectations of and experiences with both interventions and cost-effectiveness will be evaluated. METHODS/DESIGN: A multi-centre, single-blinded, randomized controlled trial will be conducted. A sample of 81 severely fatigued patients with PPS will be recruited from 3 different university hospitals and their affiliate rehabilitation centres. Patients will be randomized to one of three groups i.e. (1) exercise therapy + usual care, (2) CBT + usual care, (3) usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, fatigue, activities, quality of life and secondary outcomes will be assessed. Costs will be based on a cost questionnaire, and statistical analyses on GEE (generalized estimated equations). Analysis will also consider mechanisms of change during therapy. A responsive evaluation will be conducted to monitor the implementation process and to investigate the perspectives of patients and therapists on both interventions. DISCUSSION: A major strength of the FACTS-2-PPS study is the use of a mixed methods design in which a responsive and economic evaluation runs parallel to the trial. The results of this study will generate new evidence for the rehabilitation treatment of persons with PPS. TRIAL REGISTRATION: Dutch Trial Register NTR1371

    JPN Guidelines for the management of acute pancreatitis: epidemiology, etiology, natural history, and outcome predictors in acute pancreatitis

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    Acute pancreatitis is a common disease with an annual incidence of between 5 and 80 people per 100 000 of the population. The two major etiological factors responsible for acute pancreatitis are alcohol and cholelithiasis (gallstones). The proportion of patients with pancreatitis caused by alcohol or gallstones varies markedly in different countries and regions. The incidence of acute alcoholic pancreatitis is considered to be associated with high alcohol consumption. Although the incidence of alcoholic pancreatitis is much higher in men than in women, there is no difference in sexes in the risk involved after adjusting for alcohol intake. Other risk factors include endoscopic retrograde cholangiopancreatography, surgery, therapeutic drugs, HIV infection, hyperlipidemia, and biliary tract anomalies. Idiopathic acute pancreatitis is defined as acute pancreatitis in which the etiological factor cannot be specified. However, several studies have suggested that this entity includes cases caused by other specific disorders such as microlithiasis. Acute pancreatitis is a potentially fatal disease with an overall mortality of 2.1%–7.8%. The outcome of acute pancreatitis is determined by two factors that reflect the severity of the illness: organ failure and pancreatic necrosis. About half of the deaths in patients with acute pancreatitis occur within the first 1–2 weeks and are mainly attributable to multiple organ dysfunction syndrome (MODS). Depending on patient selection, necrotizing pancreatitis develops in approximately 10%–20% of patients and the mortality is high, ranging from 14% to 25% of these patients. Infected pancreatic necrosis develops in 30%–40% of patients with necrotizing pancreatitis and the incidence of MODS in such patients is high. The recurrence rate of acute pancreatitis is relatively high: almost half the patients with acute alcoholic pancreatitis experience a recurrence. When the gallstones are not treated, the risk of recurrence in gallstone pancreatitis ranges from 32% to 61%. After recovering from acute pancreatitis, about one-third to one-half of acute pancreatitis patients develop functional disorders, such as diabetes mellitus and fatty stool; the incidence of chronic pancreatitis after acute pancreatitis ranges from 3% to 13%. Nevertheless, many reports have shown that most patients who recover from acute pancreatitis regain good general health and return to their usual daily routine. Some authors have emphasized that endocrine function disorders are a common complication after severe acute pancreatitis has been treated by pancreatic resection

    Influence of relatives on fatigue experienced by patients with facioscapulohumeral dystrophy, myotonic dystrophy and HMSN-I.

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    Contains fulltext : 50860.pdf (publisher's version ) (Open Access)OBJECTIVES: Fatigue is a common symptom experienced by patients with various neuromuscular disorders. The purpose of this study was to assess the influence of relatives on fatigue experienced by patients with various neuromuscular disorders. METHODS: In total, 106 close relatives of patients with facioscapulohumeral dystrophy (FSHD), adult-onset myotonic dystrophy (MD), and hereditary motor and sensory neuropathy type I (HMSN), completed the Checklist Individual Strength for themselves, and how they thought their relatives filled in this questionnaire. We compared the agreement between the two. The reaction of the relative to the fatigue and to the neuromuscular disorder of the patient was assessed by the Family Response Questionnaire. Marital dissatisfaction was also measured. The influence of the relative's response to the patients' fatigue and the relatives' fatigue on the fatigue of the patient was tested in linear regression models. RESULTS: In all 3 patient groups, the responses of the relatives to fatigue and disease were characterized by sympathetic-empathic responses. Low agreement existed between relatives and MD patients (r = 0.26) over the patients' level of fatigue, but higher agreement was found between relatives and FSHD (r = 0.67) and HMSN (r = 0.73) patients. The spouses of MD patients reported less marital satisfaction. The sympathetic-empathic responses of the relatives of FSHD and HMSN patients, and in FSHD also the fatigue experienced by the relative, contributed significantly to higher levels of fatigue experienced by the patients. CONCLUSION: The sympathetic-empathic responses of close relatives to the fatigue of the patient were related to the higher levels of fatigue experienced by FSHD and HMSN patients, but not MD patients
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