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1.
Clin Auton Res ; 2024 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-38769233

RESUMO

BACKGROUND: The cardiomyopathic and neuropathic phenotype of hereditary transthyretin amyloidosis are well recognized. Cardiovascular autonomic dysfunction is less systematically and objectively assessed. METHODS: Autonomic and clinical features, quantitative cardiovascular autonomic function, and potential autonomic prognostic markers of disease progression were recorded in a cohort of individuals with hereditary transthyretin amyloidosis and in asymptomatic carriers of TTR variants at disease onset (T0) and at the time of the first quantitative autonomic assessment (T1). The severity of peripheral neuropathy and its progression was stratified with the polyneuropathy disability score. RESULTS: A total of 124 individuals were included (111 with a confirmed diagnosis of hereditary transthyretin amyloidosis, and 13 asymptomatic carriers of TTR variants). Symptoms of autonomic dysfunction were reported by 27% individuals at T0. Disease duration was 4.5 ± 4.0 years [mean ± standard deviation (SD)] at autonomic testing (T1). Symptoms of autonomic dysfunction were reported by 78% individuals at T1. Cardiovascular autonomic failure was detected by functional testing in 75% individuals and in 64% of TTR carriers. Progression rate from polyneuropathy disability stages I/II to III/IV seemed to be shorter for individuals with autonomic symptoms at onset [2.33 ± 0.56 versus 4.00 ± 0.69 years (mean ± SD)]. CONCLUSIONS: Cardiovascular autonomic dysfunction occurs early and frequently in individuals with hereditary transthyretin amyloidosis within 4.5 years from disease onset. Cardiovascular autonomic failure can be subclinical in individuals and asymptomatic carriers, and only detected with autonomic function testing, which should be considered a potential biomarker for early diagnosis and disease progression.

2.
Resid Treat Child Youth ; 41(1): 2-23, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38186636

RESUMO

This study presents a tiered conceptualization of family partnership developed by the Family-Run Executive Director Leadership Association (FREDLA) with examples of strategies from the literature. This sub-study was part of an overarching systematic review project that aimed to review the literature on family partnership in relation to youth outcomes. The tiers of family partnership include family involvement (i.e., family's inclusion in their child's care); family engagement (i.e., collaboration between TRC and families); family-driven (i.e., families as full partners). This review included thirty studies (n=23 family involvement, n=7 family engagement, n=0 family-driven). The most common family involvement methods were family therapy and family visits to the program, primarily delivered face-to-face. The most common family engagement method was activities, therapies, and skill building occurring at the home with family present. Methods of measuring family partnership primarily included the use of administrative data. Implications for research and practice include the provision of research that evaluates the effects of family partnership on outcomes important in the TRC setting and the development of research-practice and family-research collaborations to increase the uptake of effective family partnering methods.

3.
Eur J Neurol ; 31(3): e16169, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38085264

RESUMO

BACKGROUND AND PURPOSE: Pure autonomic failure (PAF) is a rare progressive neurodegenerative disease characterized by neurogenic orthostatic hypotension at presentation, without other neurological abnormalities. Some patients may develop other central neurological features indicative of multiple system atrophy or a Lewy body disorder. There are currently no biomarkers to assess possible central nervous system involvement in probable PAF at an early stage. A possibility is to evaluate the nigrostriatal dopaminergic degeneration by imaging of dopamine transporter with DaTscan brain imaging. The objective was to evaluate subclinical central nervous system involvement using DaTscan in PAF. METHODS: We retreospectively reviewed pure autonomic failure patients who were evaluated at the Autonomic Unit between January 2015 and August 2021 and underwent comprehensive autonomic assessment, neurological examination, brain magnetic resonance imaging and DaTscan imaging. DaTscan imaging was performed if patients presented with atypical features which did not meet the criteria for Parkinson's disease or multiple system atrophy or other atypical parkinsonism. RESULTS: In this cohort, the median age was 49.5 years at disease onset, 57.5 years at presentation, and the median disease duration was 7.5 years. Five of 10 patients had an abnormal DaTscan without neurological features meeting the criteria of an alternative diagnosis. Patients with abnormal DaTscan were predominantly males, had shorter disease duration and had more severe genitourinary symptoms. DISCUSSION: Degeneration of nigrostriatal dopaminergic neurons measured using DaTscan imaging can present in patients with PAF without concurrent signs indicating progression to widespread α-synucleinopathy. It is advocated that DaTscan imaging should be considered as part of the workup of patients with emerging autonomic failure who are considered to have PAF.


Assuntos
Doenças do Sistema Nervoso Autônomo , Atrofia de Múltiplos Sistemas , Insuficiência Autonômica Pura , Masculino , Humanos , Pessoa de Meia-Idade , Feminino , Insuficiência Autonômica Pura/diagnóstico por imagem , Insuficiência Autonômica Pura/patologia , Atrofia de Múltiplos Sistemas/diagnóstico por imagem , Atrofia de Múltiplos Sistemas/patologia , Proteínas da Membrana Plasmática de Transporte de Dopamina , Imageamento Dopaminérgico , Encéfalo/diagnóstico por imagem , Encéfalo/patologia , Biomarcadores , Doenças do Sistema Nervoso Autônomo/diagnóstico por imagem , Doenças do Sistema Nervoso Autônomo/etiologia
4.
Pract Neurol ; 24(2): 116-120, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38160054

RESUMO

A 62-year-old man attended ophthalmology for a simple ptosis repair. He had a chronic cough, a Horner's syndrome with post-gustatory hyperhidrosis. He was referred to the respiratory and neurology teams. MR scan of his head and neck found evidence of multifocal disease at the skull base and carotid canal, and further tests identified additional deposits in the hilar lymph nodes, heart and sacrum. A transbronchial biopsy confirmed the diagnosis of sarcoidosis. His symptoms and imaging responded well to corticosteroids, but he still undergoes regular imaging. We discuss the features of Horner's syndrome, and the autonomic associations of a chronic cough.


Assuntos
Doenças do Sistema Nervoso Central , Síndrome de Horner , Sarcoidose , Masculino , Humanos , Pessoa de Meia-Idade , Síndrome de Horner/complicações , Síndrome de Horner/diagnóstico por imagem , Tosse Crônica , Sarcoidose/complicações , Sarcoidose/diagnóstico por imagem
5.
J Neurol Sci ; 453: 120771, 2023 10 15.
Artigo em Inglês | MEDLINE | ID: mdl-37793287

RESUMO

BACKGROUND: Patients with suspected encephalitis continue to represent a diagnostic and therapeutic challenge, even in highly resourced centres. In February 2018, we set up a monthly in-person multidisciplinary team meeting (MDT). We describe the experience and outcomes of the MDT over three years. METHODS: A retrospective analysis was performed to summarise patient demographics, MDT outcomes and final diagnoses. RESULTS: Over the three-year period, 324 discussions of 238 patients took place. Cases were diverse; approximately 40% related to COVID-19 or brain infection, 40% autoimmune or other inflammatory disorders and 20% encephalitis mimics or uncertain aetiologies. Feedback from an online survey sent to referring teams and attendees highlighted the value of the MDT; 94% reported the discussion was useful and 69% reported resulting change in patient management. CONCLUSIONS: Multidisciplinary input is crucial in this challenging area, ensuring that all diagnostic avenues are explored and opening doors to novel diagnostics and therapeutics. It also supports clinicians dealing with unwell patients, including in centres where less specialist input is available, and when decisions have to be made where there is little or no evidence base.


Assuntos
COVID-19 , Encefalite , Humanos , Estudos Retrospectivos , Pandemias , Equipe de Assistência ao Paciente , Encefalite/diagnóstico , Encefalite/epidemiologia , Encefalite/terapia
6.
BMJ ; 382: e073923, 2023 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-37595965

RESUMO

Although neurological complications of SARS-CoV-2 infection are relatively rare, their potential long term morbidity and mortality have a significant impact, given the large numbers of infected patients. Covid-19 is now in the differential diagnosis of a number of common neurological syndromes including encephalopathy, encephalitis, acute demyelinating encephalomyelitis, stroke, and Guillain-Barré syndrome. Physicians should be aware of the pathophysiology underlying these presentations to diagnose and treat patients rapidly and appropriately. Although good evidence has been found for neurovirulence, the neuroinvasive and neurotropic potential of SARS-CoV-2 is limited. The pathophysiology of most complications is immune mediated and vascular, or both. A significant proportion of patients have developed long covid, which can include neuropsychiatric presentations. The mechanisms of long covid remain unclear. The longer term consequences of infection with covid-19 on the brain, particularly in terms of neurodegeneration, will only become apparent with time and long term follow-up.


Assuntos
COVID-19 , Acidente Vascular Cerebral , Humanos , Doenças Neuroinflamatórias , Síndrome de COVID-19 Pós-Aguda , SARS-CoV-2 , Teste para COVID-19
7.
PLoS One ; 18(6): e0287505, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37352181

RESUMO

OBJECTIVE: Physical education, physical activity and sports provision are important factors in whole school health promotion, however, a standardised evaluation framework to evaluate the contribution of these components is lacking. A framework that accounts for the distinct structures and associated factors, that impact upon provision would facilitate a more coherent evaluation. METHODS: A concept mapping methodology, involving the generation of factors relevant to school physical education, physical activity and sports provision and their subsequent thematic and numeric rating and sorting was utilised. Concept mapping effectively gathers, integrates, and visually and numerically represents the composite thinking of a group of relevant and expert stakeholders around a complex social phenomenon. Following a review of the extant literature and synthesis among 20 expert stakeholders, a list of 95 factor statements relevant to school physical education, physical activity and sports provision were developed. RESULTS: Each factor statement was rated and sorted by 197 multi-disciplinary participants. An eight-cluster framework that demonstrated good validity (stress value: 0.266), was derived from the data based on: 1. Partnerships and Pupil Centered Physical Education; 2. Physical Activity and Sports; 3. School Demographics; 4. Equipment, Facilities and Budget; 5. Extra Costs; 6. Curriculum and Policy; 7. School Management and 8. Timetable. Statements within the cluster on school management received the highest mean importance and modifiability ratings while statements within the cluster on school demographics received the lowest mean importance and modifiability ratings. CONCLUSIONS: Eight overarching structures which account for school physical education, physical activity and sports provision have been identified. Within each of these, structures and overall factors of greatest importance and modifiability have been illuminated. Findings stemming from this rigorous methodology, provide the foundation for the development of a national provision evaluation index to inform both school-level and national policy and actions. It is recommended the current methodology is replicated in other nations to gain corresponding insights.


Assuntos
Educação Física e Treinamento , Esportes , Humanos , Exercício Físico , Promoção da Saúde/métodos , Instituições Acadêmicas
8.
BMJ Open Respir Res ; 8(1)2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34764200

RESUMO

INTRODUCTION: Post-COVID-19 complications require simultaneous characterisation and management to plan policy and health system responses. We describe the 12-month experience of the first UK dedicated post-COVID-19 clinical service to include hospitalised and non-hospitalised patients. METHODS: In a single-centre, observational analysis, we report the demographics, symptoms, comorbidities, investigations, treatments, functional recovery, specialist referral and rehabilitation of 1325 individuals assessed at the University College London Hospitals post-COVID-19 service between April 2020 and April 2021, comparing by referral route: posthospitalised (PH), non-hospitalised (NH) and post emergency department (PED). Symptoms associated with poor recovery or inability to return to work full time were assessed using multivariable logistic regression. RESULTS: 1325 individuals were assessed (PH: 547, 41.3%; PED: 212, 16%; NH: 566, 42.7%). Compared with the PH and PED groups, the NH group were younger (median 44.6 (35.6-52.8) years vs 58.3 (47.0-67.7) years and 48.5 (39.4-55.7) years), more likely to be female (68.2%, 43.0% and 59.9%), less likely to be of ethnic minority (30.9%, 52.7% and 41.0%) or seen later after symptom onset (median (IQR): 194 (118-298) days, 69 (51-111) days and 76 (55-128) days; all p<0.0001). All groups had similar rates of onward specialist referral (NH 18.7%, PH 16.1% and PED 18.9%, p=0.452) and were more likely to require support for breathlessness (23.7%, 5.5% and 15.1%, p<0.001) and fatigue (17.8%, 4.8% and 8.0%, p<0.001). Hospitalised patients had higher rates of pulmonary emboli, persistent lung interstitial abnormalities and other organ impairment. 716 (54.0%) individuals reported <75% optimal health (median 70%, IQR 55%-85%). Less than half of employed individuals could return to work full time at first assessment. CONCLUSION: Post-COVID-19 symptoms were significant in PH and NH patients, with significant ongoing healthcare needs and utilisation. Trials of interventions and patient-centred pathways for diagnostic and treatment approaches are urgently required.


Assuntos
COVID-19 , Atenção à Saúde , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Estudos Prospectivos , SARS-CoV-2
9.
BMJ Case Rep ; 14(10)2021 Oct 27.
Artigo em Inglês | MEDLINE | ID: mdl-34706912

RESUMO

Hereditary motor and sensory neuropathy with agenesis of the corpus callosum (HMSN/ACC) is a rare autosomal recessive condition characterised by early-onset severe progressive neuropathy, variable degrees of ACC and cognitive impairment. Mutations in SLC12A6 (solute carrier family 12, member 6) encoding the K+-Cl- transporter KCC3 have been identified as the genetic cause of HMSN/ACC. We describe fraternal twins with compound heterozygous mutations in SLC12A6 and much milder phenotype than usually described. Neither of our patients requires assistance to walk. The female twin is still running and has a normal intellect. Charcot-Marie-Tooth Examination Score 2 was 8/28 in the brother and 5/28 in the sister. Neurophysiology demonstrated a length-dependent sensorimotor neuropathy. MRI brain showed normal corpus callosum. Genetic analysis revealed compound heterozygous mutations in SLC12A6, including a whole gene deletion. These cases expand the clinical and genetic phenotype of this rare condition and highlight the importance of careful clinical phenotyping.


Assuntos
Doença de Charcot-Marie-Tooth , Simportadores , Adulto , Agenesia do Corpo Caloso , Feminino , Humanos , Masculino , Mutação , Fenótipo , Simportadores/genética , Gêmeos
10.
Ann Neurol ; 89(4): 753-768, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33438240

RESUMO

OBJECTIVE: The objective of this study was to evaluate patients with ganglionic acetylcholine receptor antibody (gAChR-Ab) positive autoimmune autonomic ganglionopathy using a multimodal testing protocol to characterize their full clinical phenotype and explore biomarkers to quantify immunotherapy response. METHODS: We conducted a cohort study of 13 individuals (7 women, 21-69 years of age) with autonomic failure and gAChR-Ab >100 pM identified between 2005 and 2019. From 2018, all patients were longitudinally assessed with cardiovascular, pupillary, urinary, sudomotor, lacrimal and salivary testing, and Composite Autonomic Symptom Score (COMPASS-31) autonomic symptom questionnaires. The orthostatic intolerance ratio was calculated by dividing change in systolic blood pressure over time tolerated on head-up tilt. Eleven patients received immunotherapy. RESULTS: At first assessment, all 13 patients had cardiovascular and pupillary impairments, 7 of 8 had postganglionic sudomotor dysfunction, 9 of 11 had urinary retention and xeropthalmia, and 6 of 8 had xerostomia. After immunotherapy, there were significant improvements in orthostatic intolerance ratio (33.3 [17.8-61.3] to 5.2 [1.4-8.2], p = 0.007), heart rate response to deep breathing (1.5 [0.0-3.3] to 4.5 [3.0-6.3], p = 0.02), pupillary constriction to light (12.0 [5.5-18.0] to 19.0 [10.6-23.8]%, p = 0.02), saliva production (0.01 [0.01-0.05] to 0.08 [0.02-0.20] g/min, p = 0.03), and COMPASS-31 scores (52 to 17, p = 0.03). Orthostatic intolerance ratio correlated with autonomic symptoms at baseline (r = 0.841, p = 0.01) and following immunotherapy (r = 0.889, p = 0.02). Immunofluorescence analyses of skin samples from a patient 32 years after disease onset showed loss of nerve fibers supplying the dermal autonomic adnexa and epidermis, with clear improvements following immunotherapy. INTERPRETATION: Patients with autoimmune autonomic ganglionopathy demonstrated objective evidence of widespread sympathetic and parasympathetic autonomic failure, with significant improvements after immunotherapy. Quantitative autonomic biomarkers should be used to define initial deficits, guide therapeutic decisions, and document treatment response. ANN NEUROL 2021;89:753-768.


Assuntos
Doenças Autoimunes do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso Autônomo/diagnóstico , Biomarcadores/análise , Gânglios Autônomos , Adulto , Idoso , Doenças Autoimunes do Sistema Nervoso/terapia , Doenças do Sistema Nervoso Autônomo/terapia , Pressão Sanguínea , Estudos de Coortes , Feminino , Humanos , Imunoterapia , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Fibras Nervosas/patologia , Intolerância Ortostática , Prognóstico , Receptores Colinérgicos/imunologia , Pele/patologia , Resultado do Tratamento , Adulto Jovem
12.
Brain ; 143(10): 3104-3120, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32637987

RESUMO

Preliminary clinical data indicate that severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection is associated with neurological and neuropsychiatric illness. Responding to this, a weekly virtual coronavirus disease 19 (COVID-19) neurology multi-disciplinary meeting was established at the National Hospital, Queen Square, in early March 2020 in order to discuss and begin to understand neurological presentations in patients with suspected COVID-19-related neurological disorders. Detailed clinical and paraclinical data were collected from cases where the diagnosis of COVID-19 was confirmed through RNA PCR, or where the diagnosis was probable/possible according to World Health Organization criteria. Of 43 patients, 29 were SARS-CoV-2 PCR positive and definite, eight probable and six possible. Five major categories emerged: (i) encephalopathies (n = 10) with delirium/psychosis and no distinct MRI or CSF abnormalities, and with 9/10 making a full or partial recovery with supportive care only; (ii) inflammatory CNS syndromes (n = 12) including encephalitis (n = 2, para- or post-infectious), acute disseminated encephalomyelitis (n = 9), with haemorrhage in five, necrosis in one, and myelitis in two, and isolated myelitis (n = 1). Of these, 10 were treated with corticosteroids, and three of these patients also received intravenous immunoglobulin; one made a full recovery, 10 of 12 made a partial recovery, and one patient died; (iii) ischaemic strokes (n = 8) associated with a pro-thrombotic state (four with pulmonary thromboembolism), one of whom died; (iv) peripheral neurological disorders (n = 8), seven with Guillain-Barré syndrome, one with brachial plexopathy, six of eight making a partial and ongoing recovery; and (v) five patients with miscellaneous central disorders who did not fit these categories. SARS-CoV-2 infection is associated with a wide spectrum of neurological syndromes affecting the whole neuraxis, including the cerebral vasculature and, in some cases, responding to immunotherapies. The high incidence of acute disseminated encephalomyelitis, particularly with haemorrhagic change, is striking. This complication was not related to the severity of the respiratory COVID-19 disease. Early recognition, investigation and management of COVID-19-related neurological disease is challenging. Further clinical, neuroradiological, biomarker and neuropathological studies are essential to determine the underlying pathobiological mechanisms that will guide treatment. Longitudinal follow-up studies will be necessary to ascertain the long-term neurological and neuropsychological consequences of this pandemic.


Assuntos
Infecções por Coronavirus , Doenças do Sistema Nervoso , Pandemias , Pneumonia Viral , Adolescente , Corticosteroides/uso terapêutico , Adulto , Idoso , Idoso de 80 Anos ou mais , Betacoronavirus/patogenicidade , COVID-19 , Infecções por Coronavirus/tratamento farmacológico , Infecções por Coronavirus/epidemiologia , Uso de Medicamentos/estatística & dados numéricos , Feminino , Humanos , Imunoglobulinas Intravenosas/uso terapêutico , Londres/epidemiologia , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Doenças do Sistema Nervoso/líquido cefalorraquidiano , Doenças do Sistema Nervoso/diagnóstico por imagem , Doenças do Sistema Nervoso/tratamento farmacológico , Doenças do Sistema Nervoso/epidemiologia , Pneumonia Viral/tratamento farmacológico , Pneumonia Viral/epidemiologia , Estudos Retrospectivos , SARS-CoV-2 , Adulto Jovem
13.
Schizophr Res ; 222: 455-461, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32499165

RESUMO

INTRODUCTION: N-methyl-d-aspartate receptor antibody (NMDAR-Ab) encephalitis consensus criteria has recently been defined. We aimed to examine the prevalence of NMDAR-Ab encephalitis in patients with first episode psychosis (FEP) and treatment resistant schizophrenia (TRS) on clozapine, using clinical investigations, antibody testing and to retrospectively apply diagnostic consensus criteria. METHODS: Adult (18-65 years old) cases of FEP meeting inclusion criteria were recruited over three years and assessed using the Structured Clinical Interview for DSM-IV disorders (SCID). NMDAR-Ab was identified using a live cell-based assay (L-CBA). Seropositive cases were clinically investigated for features of encephalitis including neuro-imaging, EEG and CSF where possible. Serum was retested using immunohistochemistry (IHC) as part of diagnostic criteria guidelines. A cohort of patients with TRS was also recruited. RESULTS: 112 FEP patients were recruited over 3 years. NMDAR-Ab seroprevalence was 4/112 (3.5%) cases. One case (<1%) was diagnosed with definite NMDAR-Ab encephalitis and treated with immunotherapy. One of the three other seropositive cases met criteria for probable encephalitis. However all three were ultimately diagnosed with mood disorders with psychotic features. None have developed neurological features at three year follow up. 1/100 (1%) of patients with TRS was 100 patients with TRS were recruited. One case (1%) seropositive for NMDAR-Ab but did not meet criteria for encephalitis. CONCLUSIONS: NMDAR-Ab encephalitis as defined by consensus guidelines occured rarely in psychiatric services in this study. Further studies are needed to establish pathogenicity of serum NMDAR-Ab antibodies. Psychiatric services should be aware of the clinical features of encephalitis.


Assuntos
Encefalite Antirreceptor de N-Metil-D-Aspartato , Clozapina , Transtornos Psicóticos , Esquizofrenia , Adolescente , Adulto , Idoso , Encefalite Antirreceptor de N-Metil-D-Aspartato/epidemiologia , Autoanticorpos , Clozapina/uso terapêutico , Humanos , Pessoa de Meia-Idade , Prevalência , Transtornos Psicóticos/tratamento farmacológico , Transtornos Psicóticos/epidemiologia , Receptores de N-Metil-D-Aspartato , Estudos Retrospectivos , Esquizofrenia/epidemiologia , Estudos Soroepidemiológicos , Adulto Jovem
14.
Epilepsy Behav Case Rep ; 10: 38-43, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30013932

RESUMO

PURPOSE: This study aimed to determine the rate, cause and management of seizures in the context of potential ART-ASD interactions in a cohort of HIV + individuals. METHODS: Records of 604 HIV + patients were reviewed and those reporting epilepsy/seizure diagnosis were further evaluated. RESULTS: This cohort exhibited a seizure rate of 2.4%. HIV + patients treated for epilepsy displayed low serum ASD levels and failed to achieve seizure control. They were more likely to disengage from Neurology follow-up. CONCLUSION: For HIV + patients presenting with seizures/epilepsy the ASD prescription and the provision of supplementary support services needs to be carefully considered.

15.
Psicothema ; 29(3): 289-298, 2017 Aug.
Artigo em Espanhol | MEDLINE | ID: mdl-28693697

RESUMO

Therapeutic Residential Care for Children and Youth: A Consensus Statement of the International Work Group on Therapeutic Residential Care. In many developed countries around the world residential care interventions for children and adolescents have come under increasing scrutiny. Against this background an international summit was organised in England (spring 2016) with experts from 13 countries to reflect on therapeutic residential care (TRC). The following working definition of TRC was leading: “Therapeutic residential care involves the planful use of a purposefully constructed, multi-dimensional living environment designed to enhance or provide treatment, education, socialization, support, and protection to children and youth with identified mental health or behavioral needs in partnership with their families and in collaboration with a full spectrum of community based formal and informal helping resources”. The meeting was characterised by exchange of information and evidence, and by preparing an international research agenda. In addition, the outlines of a consensus statement on TRC were discussed. This statement, originally published in English and now reproduced in a Spanish translation, comprises inter alia five basic principles of care that according to the Work Group on Therapeutic Residental Care should be guiding for residential youth care provided at any time.


Assuntos
Proteção da Criança , Tratamento Domiciliar/normas , Adolescente , Criança , Humanos
16.
Open Forum Infect Dis ; 4(1): ofw242, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28480240

RESUMO

BACKGROUND: Human immunodeficiency virus (HIV)-associated neurocognitive disorders occurs in 20%-50% of HIV-positive patients. We undertook this study to assess the prevalence of a positive screen for cognitive impairment in the clinic population at our institution and to demonstrate the feasibility of implementing a screening program in routine clinical encounters. METHODS: This was a cross-sectional study, and patients were recruited prospectively between December 2010 and February 2013. Inclusion criteria were as follows: patients were HIV positive, over the age of 18, capable of giving informed consent, and had sufficient ability to communicate in English. Patients were screened for cognitive impairment using the Brief Neurocognitive Screen. RESULTS: A total of 604 patients were recruited, and 51.5% had a positive screen for cognitive impairment. The majority of the study cohort were male (78.8%), mean age was 40.9 (standard deviation, 10.2) years, 70.9% were Irish, the most common mode of transmission was men who have sex with men (49.3%), 83% were on antiretroviral therapy, and 88.7% were virally suppressed. Logistic regression showed that the main factors predictive of a positive screen for cognitive impairment were the endorsement of cognitive symptoms (P = .024), being born in Africa (P < .000001), the use of benzodiazepines (P = .00341), being unemployed (P = .008), and consumption of more than 40 units of alcohol weekly (P = .035). There was a positive screen for depression in 9.1% and a positive screen for anxiety in 24.5%. CONCLUSIONS: The study highlights the necessity for a structured, prospective, large-scale screening program for cognitive impairment across countries with limited resources and demonstrates the feasibility of easily implementing this with minimal training.

17.
Midwifery ; 49: 54-64, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28069317

RESUMO

BACKGROUND: obstetric and midwifery literature continually emphasise incidence and consequence of obesity in pregnancy. However, they offer less consensus on how best to support women who are obese. Therefore, this study explores in depth the lived experience of women who have a Body Mass Index (BMI) ≥30kg/m². This exploration provides a bio-psycho-social understanding of the lived experience of women to identify how best to support them throughout their childbirth experience. METHODS: an Interpretative Phenomenological Analysis (IPA) design was adopted for this qualitative study. Purposive sampling of participants was conducted on the postnatal wards of a maternity hospital in the Republic of Ireland. In total, 15 participants volunteered to take part in semi-structured interviews conducted at six to ten weeks postnatally. Data were analysed utilising the IPA framework. FINDINGS: the results indicate that participants were conscious of the problematics of communicating obesity in pregnancy. The narrative data revealed an unconscious collusion between healthcare professionals and women as they navigate obesity related conversations. The behaviours related to unconscious collusion are incorporated in the sub-ordinate themes; 'just recorded and that's all', 'but what's eating healthy? 'pussy footing around' and 'I hate that word obesity. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: the findings highlight a lack of information received by participants from healthcare professionals regarding increased BMI or weight management. The data suggests that healthcare professionals appeared to collude with women to avoid challenging discussions regarding obesity. This may be related to avoidance on participants' part and/or may be linked with healthcare professionals' reluctance to communicate issues relating to increased BMI. Although participants were generally unhappy with the communication skills of health professionals, they readily acknowledged the sensitive nature of obesity related communications. The findings provide healthcare professionals with an important insight into issues of effective communication and obesity related healthcare promotion from the woman's perspective in order to enhance provision of appropriate health information and maternity care to women who have an increased BMI.


Assuntos
Serviços de Saúde Materna/normas , Obesidade/psicologia , Relações Profissional-Paciente , Ajustamento Social , Adulto , Atitude do Pessoal de Saúde , Índice de Massa Corporal , Comunicação , Feminino , Humanos , Irlanda , Pessoa de Meia-Idade , Obesidade/terapia , Gravidez , Cuidado Pré-Natal/métodos , Cuidado Pré-Natal/normas , Pesquisa Qualitativa
18.
AIDS Care ; 29(6): 667-674, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27892704

RESUMO

High levels of cardiovascular fitness and physical activity are associated with higher levels of cognitive function in people with HIV, thus, they may reduce the risk of developing HIV-associated neurocognitive disorder (HAND). This study aimed to investigate the effects of a 16-week aerobic exercise intervention on cognitive function in people with HIV. Eleven participants living with HIV were recruited into the study. Participants were randomised into either an exercise group (n = 5), that completed a 16-week aerobic exercise programme training, 3 times per week (2 supervised sessions and one unsupervised session) or a control group (n = 6) that received no intervention. Outcomes measured included cognitive function (Montreal cognitive assessment (MOCA) and the Trail making tests A and B), aerobic fitness (modified Bruce protocol), sleep quality (Pittsburgh sleep quality index; PSQI) and physical activity levels (seven-day accelerometry). At baseline, higher levels of moderate physical activity were positively correlated with higher MOCA scores and levels of aerobic fitness were negatively associated with Trail A scores (P = 0.04 and P = 0.001 respectively). However, exercise training did not induce any significant improvements in cognitive function or aerobic fitness. The overall mean adherence rate to the exercise programme was 60%. In conclusion, in the present study a 16-week aerobic exercise intervention did not affect the cognitive function of participants with HIV. It is likely that longer intervention periods and/or higher adherence rates to exercise might be needed for an aerobic exercise programme to be effective in improving cognitive function in a cohort with no baseline cognitive impairments.


Assuntos
Transtornos Cognitivos/reabilitação , Cognição/fisiologia , Terapia por Exercício , Exercício Físico/fisiologia , Infecções por HIV/reabilitação , Complexo AIDS Demência/fisiopatologia , Complexo AIDS Demência/prevenção & controle , Acelerometria , Adulto , Transtornos Cognitivos/fisiopatologia , Estudos de Coortes , Feminino , Infecções por HIV/fisiopatologia , Humanos , Masculino , Aptidão Física/fisiologia
19.
Harm Reduct J ; 13(1): 28, 2016 10 07.
Artigo em Inglês | MEDLINE | ID: mdl-27717368

RESUMO

While the last decade has seen a growth of support for harm reduction around the world, the availability and accessibility of quality harm reduction services in prison settings is uneven and continues to be inadequate compared to the progress achieved in the broader community. This article provides a brief overview of harm reduction in prisons in Catalonia (Spain), Greece, Ireland, Italy, Latvia, Poland, and Portugal. While each country provides a wide range of harm reduction services in the broader community, the majority fail to provide these same services or the same quality of these services, in prison settings, in clear violation of international human rights law and minimum standards on the treatment of prisoners. Where harm reduction services have been available and easily accessible in prison settings for some time, better health outcomes have been observed, including significantly reduced rates of HIV and HCV incidence. While the provision of harm reduction in each of these countries' prisons varies considerably, certain key themes and lessons can be distilled, including around features of an enabling environment for harm reduction, resource allocation, collection of disaggregated data, and accessibility of services.


Assuntos
Infecções por HIV/terapia , Política de Saúde/legislação & jurisprudência , Acessibilidade aos Serviços de Saúde/legislação & jurisprudência , Hepatite C/terapia , Prisioneiros/legislação & jurisprudência , Abuso de Substâncias por Via Intravenosa/terapia , Europa (Continente) , Infecções por HIV/prevenção & controle , Redução do Dano , Hepatite C/prevenção & controle , Humanos , Prisões/legislação & jurisprudência , Abuso de Substâncias por Via Intravenosa/prevenção & controle
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