15 results
Search Results
2. Patient participation in dialysis care—A qualitative study of patients' and health professionals' perspectives.
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Årestedt, Liselott, Martinsson, Caroline, Hjelm, Carina, Uhlin, Fredrik, and Eldh, Ann Catrine
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ATTITUDE (Psychology) , *CONTENT analysis , *PSYCHOLOGY of executives , *FOCUS groups , *HEMODIALYSIS , *HEMODIALYSIS patients , *HOSPITAL medical staff , *INTERVIEWING , *RESEARCH methodology , *MEDICAL personnel , *PATIENT-professional relations , *MEDICAL protocols , *PATIENT compliance , *RESEARCH , *RESEARCH funding , *SELF-management (Psychology) , *THERAPEUTICS , *PATIENT participation , *QUALITATIVE research , *PSYCHOSOCIAL factors , *PATIENT-centered care , *HEALTH literacy , *PATIENTS' attitudes , *DESCRIPTIVE statistics - Abstract
Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]
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- 2019
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3. Immunotherapy in selected patients with Down syndrome disintegrative disorder.
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Cardinale, Kathleen M, Bocharnikov, Alexandra, Hart, Sarah J, Baker, Jane Ann, Eckstein, Christopher, Jasien, Joan M, Gallentine, William, Worley, Gordon, Kishnani, Priya S, and Van Mater, Heather
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THYROID diseases , *THERAPEUTICS , *IMMUNOTHERAPY , *DISEASES , *DOWN syndrome , *AUTOIMMUNE disease treatment , *THERAPEUTIC use of immunoglobulins , *AUTOIMMUNE diseases , *COMPARATIVE studies , *IMMUNOLOGICAL adjuvants , *RESEARCH methodology , *MEDICAL cooperation , *RESEARCH , *EVALUATION research ,PEOPLE with Down syndrome - Abstract
Down syndrome disintegrative disorder (DSDD) is an increasingly identified condition characterized by cognitive decline, autistic characteristics, insomnia, catatonia, and psychosis in adolescents and young adults with Down syndrome. Previously we reported a higher rate of autoimmune thyroid disease in these patients compared with unaffected individuals with Down syndrome. We therefore hypothesized DSDD may in some cases be immune-mediated. Here we report four cases of DSDD treated with immunotherapy. Families were interviewed retrospectively for symptoms of cognitive decline, autism, catatonia, psychosis, and insomnia before and after treatment, using established scales where possible. Medical records were reviewed for evaluations and treatment. All four patients received intravenous immunoglobulin with or without additional immunotherapy. Significant improvements were seen in catatonia, insomnia, autistic features, cognition, and psychosis. In this small case series of patients with autoimmunity, core symptoms of DSDD improved significantly after immunotherapy. This supports the hypothesis that, in some patients, DSDD is immune-mediated. Immunotherapy should be considered in the treatment of DSDD, particularly in patients with a history of autoimmunity. WHAT THIS PAPER ADDS: Immunotherapy may improve symptoms of catatonia, insomnia, autism severity, cognitive decline, and psychosis in Down syndrome disintegrative disorder. [ABSTRACT FROM AUTHOR]
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- 2019
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4. Mycophenolate mofetil in paediatric autoimmune or immune-mediated diseases of the central nervous system: clinical experience and recommendations.
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Dale, Russell C, Nosadini, Margherita, Sartori, Stefano, Lim, Ming, Gadian, Jonathan, and Thomas, Terrence
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CENTRAL nervous system diseases , *MYCOPHENOLIC acid , *MYELIN sheath diseases , *MOVEMENT disorders , *AUTOIMMUNE diseases , *CENTRAL nervous system , *RESEARCH , *NEUROLOGICAL disorders , *RESEARCH methodology , *RETROSPECTIVE studies , *EVALUATION research , *MEDICAL cooperation , *DISEASE relapse , *TREATMENT effectiveness , *COMPARATIVE studies , *IMMUNOSUPPRESSIVE agents , *THERAPEUTICS - Abstract
Aim: To gather data on mycophenolate mofetil (MMF) in paediatric autoimmune/immune-mediated central nervous system (CNS) conditions, focusing on safety and factors that may affect MMF efficacy.Method: Retrospective, multicentre study based on four paediatric neurology centres.Results: Forty-four children were included (30 females, 14 males): 19 had proven/suspected autoimmune encephalitis, 14 had inflammatory demyelinating CNS diseases, and 11 had other autoimmune/immune-mediated CNS conditions. Before MMF, all received first-line immune therapies, and 17 had second-line rituximab and/or cyclophosphamide. MMF was started at a median of 9.5 months from disease onset (range 1-127mo) (median age 9y 4mo, range 1y 5mo-16y 5mo), and was used for median 18 months (range 0.3-73mo). On MMF, 31 patients were relapse-free, whereas eight relapsed (excluding patients with chronic-progressive course). Relapses on MMF were associated with medication weaning/cessation, or with suboptimal MMF dosage/duration. Adverse events of MMF occurred in eight patients: six moderate (gastrointestinal, movement disorder, dermatological) and two severe (infectious).Interpretation: MMF use in paediatric neuroimmunology is heterogeneous, although relatively safe. We have identified factors that may affect MMF efficacy and provide recommendations on MMF usage.What This Paper Adds: Mycophenolate mofetil (MMF) use was heterogeneous with relatively common adverse events, although mostly not severe. MMF treatment reduced median annualized relapse rate, although 20% of patients relapsed on MMF. A high relapse rate pre-MMF and late MMF start were associated with higher probability of relapsing on MMF. Most relapses were associated with suboptimal MMF dosage, short MMF duration, or concurrent medication weaning/discontinuation. [ABSTRACT FROM AUTHOR]- Published
- 2019
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5. Sleep deprivation and melatonin for inducing sleep in paediatric electroencephalography: a prospective multicentre service evaluation.
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Alix, James J P, Kandler, Rosalind H, Pang, Catherine, Stavroulakis, Theocharis, and Catania, Santiago
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ELECTROENCEPHALOGRAPHY , *SLEEP deprivation , *MELATONIN , *SPASMS , *BEST practices , *BRAIN physiology , *BRAIN , *CHI-squared test , *COMPARATIVE studies , *LONGITUDINAL method , *RESEARCH methodology , *MEDICAL cooperation , *RESEARCH , *EVALUATION research , *THERAPEUTICS - Abstract
Aim: To compare the efficacy of the main methodologies in attaining sleep and electroencephalography (EEG) abnormalities in children with a view to producing recommendations on best practice.Method: Fifty-one UK centres participated. Methods for sleep induction (sleep deprivation, melatonin, and combined sleep deprivation/melatonin) were compared. Data pertaining to demographics, achievement of stage II sleep, and recording characteristics (duration of study, presence of epileptiform activity in awake/sleep states) were prospectively collected for consecutive patients in November and December 2013.Results: Five hundred and sixty-five patients were included. Age range was 1 years to 17 years (mean 7y 10mo), 27.7 per cent had an underlying neurobehavioural condition. Stage II sleep was achieved in 69 per cent of sleep deprived studies, 77 per cent of melatonin studies, and 90 per cent of combined intervention studies (p<0.001, χ2 ). In children who slept, there was no difference between the three interventions in eliciting epileptiform discharges. In children who did not sleep, epileptiform abnormalities were seen more often than after sleep deprivation alone (p=0.02, χ2 ). Seizures were rare.Interpretation: Combined sleep deprivation/melatonin is more effective than either method alone in achieving sleep. The occurrence of epileptiform activity during sleep is broadly similar across the three groups. We recommend the combined intervention to induce sleep for paediatric EEG.What This Paper Adds: Combined sleep deprivation/melatonin is more effective in achieving sleep than either sleep deprivation or melatonin alone. Sleep latency is shorter with combined sleep deprivation/melatonin. When children do sleep, there is no difference in the occurrence of epileptiform abnormalities between different induction methods. Seizures are rare in sleep electroencephalography recordings. [ABSTRACT FROM AUTHOR]- Published
- 2019
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6. Neurodevelopmental difficulties in children with idiopathic clubfoot.
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Lööf, Elin, Andriesse, Hanneke, Broström, Eva W, André, Marie, and Bölte, Sven
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CLUBFOOT , *FOOT abnormalities , *MOTOR ability , *SENSORY perception , *DEVELOPMENTAL disabilities , *NEUROLOGICAL disorders , *COMPARATIVE studies , *RESEARCH methodology , *MEDICAL cooperation , *QUESTIONNAIRES , *RESEARCH , *RESEARCH funding , *EVALUATION research , *CROSS-sectional method , *DISEASE complications , *THERAPEUTICS - Abstract
Aim: To evaluate neurodevelopmental difficulties in children with idiopathic clubfoot.Method: A cross-sectional study of 106 children (29 females, 77 males; aged 8-10y) with idiopathic clubfoot and 109 age-, sex-, and residential area-parallelized children from the general population. Neurodevelopmental difficulties were assessed using the parent-report Five to Fifteen (FTF) questionnaire. Group differences were analysed for FTF domains, subdomains, and items. The 90th centile cut-off of the general population on FTF and the parent-based disease-specific instrument (DSI) were used to evaluate clinical relevance of neurodevelopmental symptoms in idiopathic clubfoot.Results: Modest group differences were found for several FTF domains (motor skills, perception, and language) and subdomains (gross and fine motor skills, relation in space, comprehensive and expressive language skills). Thirty-one per cent of the children with idiopathic clubfoot scored in the clinically significant range on 2 or more FTF domains. DSI scores were lower in this subgroup.Interpretation: Findings indicate a moderate and selective increase of neurodevelopmental difficulties in children with idiopathic clubfoot as a whole, especially in the areas of motor skills, perception, and language. Idiopathic clubfoot with marked neurodevelopmental symptoms are associated with less satisfaction of the clubfoot treatment. Our results recommend awareness of neurodevelopmental difficulties in the assessment and treatment of idiopathic clubfoot.What This Paper Adds: A substantial minority of children with idiopathic clubfoot show neurodevelopmental difficulties. Children with idiopathic clubfoot might present additional difficulties in motor skills, perception, and language. Children with idiopathic clubfoot and marked neurodevelopmental symptoms show poorer parent-reported clubfoot treatment satisfaction. Neurodevelopmental difficulties should be considered in clinical practice of idiopathic clubfoot. [ABSTRACT FROM AUTHOR]- Published
- 2019
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7. Differentiating arterial ischaemic stroke from migraine in the paediatric emergency department.
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Mackay, Mark T., Lee, Michelle, Yock‐Corrales, Adriana, Churilov, Leonid, Donnan, Geoffrey A., Monagle, Paul, Babl, Franz E., and Yock-Corrales, Adriana
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STROKE patients , *MIGRAINE in children , *PEDIATRIC neurology diagnosis , *PEDIATRIC neurology research , *PEDIATRIC emergency services , *CEREBRAL ischemia , *MIGRAINE diagnosis , *STROKE diagnosis , *STROKE treatment , *MIGRAINE , *BRAIN , *COMPARATIVE studies , *DIFFERENTIAL diagnosis , *EMERGENCY medical services , *HOSPITAL emergency services , *LONGITUDINAL method , *RESEARCH methodology , *MEDICAL cooperation , *NEURORADIOLOGY , *RESEARCH , *EVALUATION research , *RETROSPECTIVE studies , *DIAGNOSIS , *THERAPEUTICS ,CEREBRAL ischemia treatment - Abstract
Aim: To estimate the strengths of association between clinical features and migraine or arterial ischaemic stroke (AIS) in children presenting to the emergency department.Method: Eighty-four children with migraine, prospectively recruited from 2009 to 2010, were compared with 55 children with AIS, prospectively/retrospectively recruited from 2003 to 2010. Odds ratios were calculated via logistic regression to measure associations between clinical features and process-of-care factors, and migraine and AIS.Results: Median age was 13 years 5 months (interquartile range 12y 11mo-13y 10mo) for migraine and 5 years (interquartile range 3y 7mo-8y) for patients with AIS. All cases of AIS and 30% of migraine cases underwent neuroimaging. Over 40% of children with migraine had vomiting, numbness, or visual disturbance; other symptoms were uncommon. Fifty-five per cent had no signs on physician assessment. Weakness or speech disturbance were common in patients with AIS. Significant clinical features associated with increased odds of AIS included sudden symptom onset, weakness, seizures, speech disturbance, and ataxia, and signs of face, arm, or leg weakness, inability to walk, dysarthria, dysphasia, and altered consciousness (p<0.05). Significant features associated with decreased odds of AIS included older age, vomiting, visual, sensory, other symptoms, and absent focal signs on assessment (p<0.05).Interpretation: Presenting features can discriminate childhood AIS from migraine. These differences inform decisions about urgency and type of neuroimaging in children presenting to the emergency department with brain attack symptoms.What the Paper Adds: Weakness, seizures, ataxia, speech, or walking difficulties are more frequent in arterial ischaemic stroke (AIS). Vomiting, visual, or sensory disturbance and absent focal signs are more frequent in migraine. Identifying features of AIS and migraine guides neuroimaging in children with brain attack symptoms. [ABSTRACT FROM AUTHOR]- Published
- 2018
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8. Neurodevelopmental outcome of nutritional intervention in newborn infants at risk of neurodevelopmental impairment: the Dolphin neonatal double-blind randomized controlled trial.
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Andrew, Morag J., Montague‐Johnson, Christine, Laler, Karen, Baker, Bonny, Sullivan, Peter B., Parr, Jeremy R., Holmes, Jane, and Montague-Johnson, Christine
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NEWBORN infants , *NEUROLOGICAL disorders , *DOCOSAHEXAENOIC acid , *RANDOMIZED controlled trials , *BLIND experiment , *NUCLEOTIDES , *CHOLINE , *PREMATURE infant disease prevention , *CHILD development , *COMPARATIVE studies , *DIET therapy , *PREMATURE infants , *PREMATURE infant diseases , *RESEARCH methodology , *MEDICAL cooperation , *RESEARCH , *STATISTICAL sampling , *EVALUATION research , *THERAPEUTICS - Abstract
Aim: To investigate whether neonates at risk for neurodevelopmental impairment have improved neurodevelopment after docosahexaenoic acid, choline, and uridine-5-monophosphate supplementation versus controls.Method: Recruitment was from UK neonatal units. Eligible for inclusion were infants born at less than 31 weeks' gestation with a weight less than the ninth centile; infants born at less than 31 weeks' gestation with a grade II or higher intraventricular haemorrhage/preterm white matter injury; infants born between 31 weeks' and 40 weeks' gestation plus 28 days with a grade II or higher intraventricular haemorrhage/preterm white matter injury, moderate or severe hypoxic-ischaemic encephalopathy, or defined neuroimaging abnormalities. Treatment/control supplementation was for 2 years (double-blind, randomized, controlled design). Infants were stratified according to sex, gestation, and brain injury severity. Primary outcome was cognitive composite score (CCS) of the Bayley Scales of Infant Development, Third Edition (Bayley-III at 24mo). Secondary outcomes were language composite score (LCS) of the Bayley-III, motor composite score (MCS) of the Bayley-III, and Vineland Adaptive Behaviour Scales, Second Edition (VABS-II) score.Results: Sixty-two neonates were recruited, 59 were randomized (34 males, 25 females). Fifty-three started supplementation. Most families found supplementation acceptable. The treatment group CCS-Bayley-III scores were non-significantly higher than controls (mean score difference at 24mo: 9.0; 95% confidence interval -0.2 to 18.2). Language and VABS-II scores, but not motor score, were non-significantly higher in the treatment group.Interpretation: Most families found supplementation feasible. Improved neurodevelopmental outcomes in the treatment group were not statistically significant. A larger multicentre trial exploration is warranted.What This Paper Adds: Dietary supplementation of neonates at risk of neurodevelopmental impairment is feasible. No statistically significant neurodevelopmental advantages were identified for the treatment group compared to controls. Treatment group cognitive and language advantage are of a clinically meaningful magnitude. [ABSTRACT FROM AUTHOR]- Published
- 2018
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9. Nutritional intervention and neurodevelopmental outcome in infants with suspected cerebral palsy: the Dolphin infant double-blind randomized controlled trial.
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Andrew, Morag J., Montague‐Johnson, Christine, Laler, Karen, Baker, Bonny, Sullivan, Peter B., Parr, Jeremy R., Qi, Cathy, and Montague-Johnson, Christine
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NEURODEVELOPMENTAL treatment for infants , *CEREBRAL palsy , *DOCOSAHEXAENOIC acid , *NUTRITION , *RANDOMIZED controlled trials , *CEREBRAL palsy treatment , *NUCLEOTIDES , *CHOLINE , *CHILD development , *COMPARATIVE studies , *DIET therapy , *RESEARCH methodology , *MEDICAL cooperation , *RESEARCH , *STATISTICAL sampling , *EVALUATION research , *BLIND experiment , *DISEASE complications , *PSYCHOLOGY , *THERAPEUTICS - Abstract
Aim: To investigate whether docosahexaenoic acid (DHA), choline, and uridine-5-monophosphate (UMP) supplementation improves neurodevelopmental outcome in infants with suspected cerebral palsy (CP) versus a comparison group of children.Method: Infants aged 1 to 18 months with suspected CP were recruited from UK child development centres. Participants received daily treatment or control supplementation for 2 years (double-blind randomized control design). Stratification was by age, sex, predominant pattern of motor involvement (four limbs or other), and visual impairment (or not). The primary outcome was the cognitive composite score of the Bayley Scales of Infant and Toddler Development, Third Edition (CCS-Bayley-III). Secondary outcomes included language composite and motor composite scores of the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III).Results: Forty infants were recruited; 35 began supplementation, 29 completed 1 to 2 years' supplementation. The treatment group CCS-Bayley-III was non-significantly higher than the comparison group (mean 77.7 [SD 19.2] and 72.2 [SD 19.8] respectively, mean modelled difference 4.4 [-2.8, 11.6]). The treatment group language scores, but not motor scores, were non-significantly higher than for the comparison group.Interpretation: Most families found supplementation feasible. No statistically significant differences in neurodevelopmental outcome between the treatment and comparison groups were identified. Further investigation of neurodevelopmental outcome after supplementation with DHA, choline, and UMP of infants with suspected CP is warranted.What This Paper Adds: This was the first trial of phosphatidylcholine precursor supplementation in infants with suspected cerebral palsy (CP). Families of infants with suspected CP found 2-year nutritional supplementation feasible. There was no statistically significant neurodevelopmental advantage for the treatment group versus the comparison group. However, treatment group cognitive and language advantage were of clinically meaningful magnitude. [ABSTRACT FROM AUTHOR]- Published
- 2018
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10. Stiripentol efficacy and safety in Dravet syndrome: a 12-year observational study.
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Myers, Kenneth A., Lightfoot, Paul, Patil, Shekhar G., Cross, J. Helen, and Scheffer, Ingrid E.
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PARTIAL epilepsy , *MEDICATION safety , *DRUG efficacy , *ADVERSE health care events , *THERAPEUTICS , *ANTICONVULSANTS , *HETEROCYCLIC compounds , *COMPARATIVE studies , *EPILEPSY , *LONGITUDINAL method , *RESEARCH methodology , *MEDICAL cooperation , *GENETIC mutation , *RESEARCH , *EVALUATION research , *TREATMENT effectiveness , *RETROSPECTIVE studies , *MEMBRANE transport proteins ,SIDE effects of anticonvulsants - Abstract
Aim: To assess long-term safety and efficacy of stiripentol as an antiepileptic medication for people with Dravet syndrome.Method: A prospective, observational open-label study (2003-2015) of the efficacy and long-term safety of stiripentol in patients with Dravet syndrome and ongoing seizures. Frequency of generalized tonic-clonic seizures, focal seizures, status epilepticus, and adverse events were recorded.Results: Forty-one patients started stiripentol, with median age at enrolment 5 years 7 months (range 11mo-22y) and median duration of treatment 37 months (range 2-141mo). Twenty out of 41 patients had greater than or equal to 50% long-term reduction in frequency of generalized tonic-clonic seizures. Frequency of focal seizures was decreased by greater than or equal to 50% in 11 out of 23 patients over the long-term. Frequency of status epilepticus was decreased by 50% or more in 11 out of 26 patients. The most common adverse events were anorexia, weight loss, sedation, and behavioural changes. One patient had worsening of absence and myoclonic seizures. Another developed recurrent pancreatitis on concurrent valproate.Interpretation: Stiripentol improves long-term seizure frequency in approximately 50% of patients with Dravet syndrome, when used as part of unrestricted polytherapy. Long-term use appears safe. In more than 40% of patients, episodes of status epilepticus markedly decrease after stiripentol initiation. What this paper adds Frequency of status epilepticus is reduced in 40% of patients with Dravet syndrome after stiripentol initiation. Stiripentol is effective for generalized tonic-clonic and focal seizures. Stiripentol can be safely used with a range of antiepileptic drugs. [ABSTRACT FROM AUTHOR]- Published
- 2018
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11. Pharmacological and neurosurgical interventions for managing dystonia in cerebral palsy: a systematic review.
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Fehlings, Darcy, Brown, Leah, Harvey, Adrienne, Himmelmann, Kate, Lin, Jean‐Pierre, Macintosh, Alexander, Mink, Jonathan W., Monbaliu, Elegast, Rice, James, Silver, Jessica, Switzer, Lauren, Walters, Ilana, and Lin, Jean-Pierre
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NEUROSURGERY , *TREATMENT of dystonia , *CEREBRAL palsy treatment , *SYSTEMATIC reviews , *TREATMENT effectiveness , *MUSCLE relaxants , *BACLOFEN , *CEREBRAL palsy , *COMPARATIVE studies , *DYSTONIA , *RESEARCH methodology , *MEDICAL cooperation , *RESEARCH , *EVALUATION research , *DEEP brain stimulation , *DISEASE complications , *THERAPEUTICS - Abstract
Aim: To systematically review evidence for pharmacological/neurosurgical interventions for managing dystonia in individuals with cerebral palsy (CP) to inform a care pathway.Method: Searches included studies with a minimum of five participants with dystonia in CP receiving oral baclofen, benzodiazepines (clonazepam, diazepam, lorazepam), clonidine, gabapentin, levodopa, trihexyphenidyl, botulinum toxin, intrathecal baclofen (ITB), or deep brain stimulation (DBS). Evidence was classified according to American Academy of Neurology guidelines.Results: Twenty-eight articles underwent data extraction: one levodopa, five trihexyphenidyl, three botulinum toxin, six ITB, and 13 DBS studies. No articles for oral baclofen, benzodiazepines, clonidine, or gabapentin met the inclusion criteria. Evidence for reducing dystonia was level C (possibly effective) for ITB and DBS; level C (possibly ineffective) for trihexyphenidyl; and level U (inadequate data) for botulinum toxin.Interpretation: For dystonia reduction, ITB and DBS are possibly effective, whereas trihexyphenidyl was possibly ineffective. There is insufficient evidence to support oral medications or botulinum toxin to reduce dystonia. There is insufficient evidence for pharmacological and neurosurgical interventions to improve motor function, decrease pain, and ease caregiving. The majority of the pharmacological and neurosurgical management of dystonia in CP is based on clinical expert opinion.What This Paper Adds: Intrathecal baclofen and deep brain stimulation are possibly effective in reducing dystonia. Current evidence does not support effectiveness of oral medications or botulinum toxin to reduce dystonia. Evidence is inadequate for pharmacological/neurosurgical interventions impact on improving motor function, pain/comfort, and easing caregiving. The majority of the care pathway rests on expert opinion. [ABSTRACT FROM AUTHOR]- Published
- 2018
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12. Changing roles and responses of health care workers in HIV treatment and care.
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Rajaraman, Divya and Palmer, Natasha
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HIV infections , *THERAPEUTICS , *MEDICAL personnel , *MEDICAL care , *MIDDLE class , *RESEARCH - Abstract
A key limiting factor in the scale up and sustainability of HIV care and treatment programmes is the global shortage of trained health care workers. This paper discusses why it is important to move beyond conceptualising health care workers simply as ‘inputs’ in the delivery of HIV treatment and care, and to also consider their roles as partners and agents in the process of health care. It suggests a framework for thinking about their roles and responses in HIV care, considers the current evidence base, and concludes by identifying key areas for future research on health care workers’ responses in HIV treatment and care in low and middle income settings. [ABSTRACT FROM AUTHOR]
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- 2008
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13. Pressing the Flesh: A Tension in the Study of the Embodied, Embedded Mind?
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CLARK, ANDY
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RESEARCH , *MENTAL healing , *THEORY of knowledge , *PSYCHOLOGY , *MIND & body , *HOLISTIC medicine , *PSYCHOLOGICAL stress , *BODY-mind centering , *THERAPEUTICS - Abstract
Mind, it is increasingly fashionable to assert, is an intrinsically embodied and environmentally embedded phenomenon. But there is a potential tension between two strands of thought prominent in this recent literature. One of those strands depicts the body as special, and the fine details of a creature’s embodiment as a major constraint on the nature of its mind: a kind of new-wave body-centrism. The other depicts the body as just one element in a kind of equal-partners dance between brain, body and world, with the nature of the mind fixed by the overall balance thus achieved: a kind of extended functionalism (now with an even broader canvas for multiple realizability than ever before). The present paper displays the tension, scouts the space of possible responses, and ends by attempting to specify what the body actually needs to be, given its complex role in these recent debates. [ABSTRACT FROM AUTHOR]
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- 2008
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14. RESTRICTED TREATMENTS, INDUCEMENTS, AND RESEARCH PARTICIPATION.
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Edwards, Sarah J. L.
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THERAPEUTICS , *PATERNALISM , *CLINICAL trials , *MEDICAL research , *EVIDENCE-based medicine , *INFORMED consent (Medical law) , *HEALTH policy - Abstract
In this paper, I support the claim that placing certain restrictions on public access to possible new treatments is morally problematic under some exceptional circumstances. Very ill patients may find that all available standard treatments are unacceptable, either because they are ineffective or have serious adverse effects, and these patients may understandably be desperate to try something new even if this means stepping into the unknown. Faced with certain death, it is rational to want to try something new and to chance a dire outcome. Restricting possible new treatments to research trials may put these treatments scientifically, geographically or economically out of reach of these patients. For those who can get access, research restrictions could weaken, though not necessarily eliminate, the value of consent participants of such trials are able to give. Some participants may therefore be exploited for scientific purposes in the name of public interest. There are nonetheless compelling reasons for keeping some restrictive regulation in this area. [ABSTRACT FROM AUTHOR]
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- 2006
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15. Adherence to tuberculosis treatment: lessons from the urban setting of Delhi, India.
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Jaiswal, A., Singh, V., Ogden, J. A., Porter, J. D. H., Sharma, P. P., Sarin, R., Arora, V. K., and Jain, R. C.
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TUBERCULOSIS , *HEALTH facilities , *THERAPEUTICS , *COMPLICATIONS of alcoholism , *PSYCHOLOGY of alcoholism , *DRUG therapy for tuberculosis , *TUBERCULOSIS complications , *ANTITUBERCULAR agents , *COMMUNICATION , *COMPARATIVE studies , *HEALTH services accessibility , *INTERVIEWING , *RESEARCH methodology , *MEDICAL needs assessment , *MEDICAL cooperation , *PATIENT-professional relations , *PATIENT compliance , *RESEARCH , *SYSTEM analysis , *URBAN health , *PSYCHOSOCIAL factors , *EVALUATION research , *PATIENT dropouts , *DIRECTLY observed therapy - Abstract
The Revised National Tuberculosis Control Programme (RNTCP), which incorporated the WHO DOTS strategy was introduced in India in the mid-1990s. An operational research project was conducted between 1996 and 1998 to assess the needs and perspectives of patients and providers in two chest clinics in Delhi, Moti Nagar and Nehru Nagar, during the introduction of the new strategy. This paper reports on the findings of the project, concentrating on information collected from 40 in-depth interviews with patient defaulters and from non-participant observations in clinics and directly observed treatment centres. In Moti Nagar chest clinic, 117 of 1786 (6.5%) patients and 195 of 1890 (10%) patients in Nehru Nagar left care before their treatment was complete. It was argued that the reasons for default stem from a poor correlation between patient and programme needs and priorities, and from particular characteristics of the disease and its treatment. Patient needs that were not met by the health system included convenient clinic timings, arrangements for the provision for treatment in the event of a family emergency and provision for complicated cases like alcoholics. The problems facing the provider were poor interpersonal communication with the health staff, lack of attention and support at the clinic, difficulty for patients to re-enter the system if they missed treatment and, in certain areas, long distances to the clinic. Problems related to diseases were inability of the staff to deal with drug side-effects, and patients' conception of equating well-being with cure. Simple, practical measures could improve the provision of tuberculosis (TB) treatment: more flexible hours, allowances for poor patients to reach the clinics and training health care staff for respectful communication and monitoring drug side-effects. The findings indicate a need to rethink the label of 'defaulter' often given to the patients. The important areas for future operational research is also highlighted. [ABSTRACT FROM AUTHOR]
- Published
- 2003
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